ElderCareTalk

Follow Me to Mindset Memory Centre!

2011-04-25T11:24:00.000-07:00

For anyone who hasn't completely given up on following my blog here at ElderCareTalk, I've started a new blog called Mindset Memory Centre, which is at www.mindsetmemory.com.

The reason for doing so is twofold:

After being soundly told off by someone with early (or younger) onset of Alzheimer's that not everyone with dementia is "elderly," I committed to changing my name. I finally did.
I wanted to roll my book and blog into one website. So now you can buy Life Scenes 1 right from that website.

Please make sure to visit me there!

Is "Retirement" Contributing to Dementia?

2010-03-03T08:49:00.001-08:00

If you are reading today's blog expecting a well-researched piece of literature, well, it's not. It's a gut feeling that I've had for some time, and I read two articles today that back up my gut feeling. And my gut feeling is that our laid-back, leisure-laden, no-work Western version of retirement is contributing to dementia.

Now, in order to prove this, I'd have to compare data of the rate of dementia in people of typical retirement age (let's say 65 and up) in our country to other countries, and I'd have to look at the patterns of work along with the cultural work ethic of nations when it comes to people of retirement age. I'd also have to look at the average age of death (perhaps not many people of typical retirement age live long enough to have dementia in some countries) and I'd have to study the attitudes towards aging in a selection of cultures around the world. But I have two manuals and a Hebrew song book due and I don't have time to do that most interesting study right now (but would be interested in hearing from those who have).

So I'll just go back to my original unproven hypothesis that our Western version of retirement is contributing to increased rates of dementia. Here's why.

It's starting to become acceptable knowledge that finding and having purpose leads to a longer life with less chance of losing cognitive ability as one ages. There is an article, the link to which has been traveling around the Internet over the past 24 hours, which can be found by clicking here. The article is called "Sense of purpose reduces Alzheimer's risk." Researchers have found that "People who said they felt they had a sense of direction in their lives were significantly less likely to go on and develop the condition."

Up until retirement age, we have a purpose, whether we like that purpose or not, whether we chose that purpose or not. We have to get up each morning and get the kids off to school. We have to make food, get in our cars, get to work. We have to clean house, do laundry, go shopping. We have to visit our aging parents. We have to book a vacation. We have to celebrate, mourn, socialize, spiritualize. We have a whole raft of things to keep us going, to propel us forward. It's our purpose.

And all along, we look forward to retirement. Kinda how people of many faiths look forward to a heavenly paradise, we look forward to the day when we do... nothing. And it's that nothing that is killing us.

I live in Phoenix, one of the retirement capitals of North America, if not the world. Names like "Leisure World" and "Sun City" adorn retirement communities. During the winter the roads are crowded with vehicles sporting license plates from Alberta, BC and Minnesota. To be sure, I'd have to admit that most of the retirees living in Leisure World have purpose, particularly those who are snow birds and look forward to relatives visiting almost continuously and also towards the inevitable time when they must pack up and go north, or south, depending on the season. Some people are quite active in the politics of their communities, becoming members of the board. Many retirees take advantage of organized activities, golf, pot luck dinners and the like.

But can man live on bingo alone? I think not.

In our Western society (and I'm really just thinking North America here) most of us move forward towards that mythical day when we can stop. Retire. We come to a screeching halt and, do nothing. Because we have "retired," we don't have to find any other purpose than to be retired. Because there is no place of employment we have to show up at, no kids screaming for food, no aging parents to care for, we have no purpose. And because we've been too busy throughout the first chunk of our lives fulfilling everyone else's needs, we have neglected to find purpose ourselves. So we head into the last phase of our lives rudderless and purposeless. And we are now finding that this attitude can contribute to dementia.

Where I find our retirement mentality carried over most -- and where it should be least welcome -- is in to our long term care facilities. Precisely at the time when we ought to be injecting the high-octane, super energy gas into our independent living, assisted living, skilled nursing and memory care residents, instead we usher them into la la land. Think of the last long term care facility you have visited. What sort of environment are they striving for? Peaceful, luxurious, don't lift a finger, bingo three times a day, three meals a day, housekeeping, quiet, no stress, no work, we bring everything to you... these are words that come to mind when I think of long term care facilities. How is anyone supposed to find purpose in these places? And why would the administrators of long term or memory care facilities even THINK to help their residents find purpose when their residents are supposed to be living out their lives in blissful retirement?!

I've written about Ivy Bean before. Ivy is 104. Between her Twitter and Facebook accounts, she now has 55,000 friends and followers. Yesterday she was driven via a Bentley from her home at Hillside Manor (long term care) in Bradford, England, to #10 Downing Street, at the invitation of the Prime Minister of England. Please read this short article about her tweets of her experience (the one about the bathroom is most droll). What's next, the Queen of England? I would not be in the least surprised.

The point is that the residents of Hillside Manor are encouraged to dream and are enabled to carry out their dreams. Ivy Bean could just as well be languishing in "Sunset Hills" (a made-up name) home, watching TV and having her nails done (not that there is anything wrong with that). But I think that if she was, she'd be dead, or have mild cognitive impairment at the least.

We need to encourage everyone, no matter the age, no matter the condition, to dream and then help people to fulfill their dreams. This is what we all ought to be striving for, even if the person who has the dream, has dementia. Because not only does having purpose, a job, a task, a motivation, help to stave off dementia, it helps those who already have the disease to slow the progression. I truly believe this. Note that I'm differentiating between purposeful activity and a slate of activities designed to fill time. Purposeful activity, activity that moves a person towards their purpose, is different from killing time. Purposeful activity might include opportunities to give back, creative endeavours that the person finds fulfilling, activity that moves a person towards their stated goal, or activity that the person simply finds extremely interesting and fulfilling. Note that purposeful activity COULD include bingo if the person's goal is to rule the bingo world. And yes, retirement can include goals; a person living in a memory care unit can still have goals. But just activities for the sake of activity?

If you are the care partner of someone with dementia, rather than thinking about the person you are losing, think about the person your loved one could become. How can you help him or her to find their purpose? How can you help them to carry out their purpose?

And think about not retiring!

Humanized Dementia Care: A Call to Action by Richard Taylor

2010-02-24T14:06:00.000-08:00

Humanizing Dementia Care... I'll let the following email from Richard Taylor to his thousands of groupies speak for itself. After reading it you will understand more about what it's like to have dementia in today's society, think about why it is that research dollars are for the most part targeted towards finding a cure to the detriment of those who are already living with the disease, and recognize why we need a movement to promote what Richard calls Humanized Dementia Care.

Here's some background for those who aren't familiar with Richard's story. He has had "the symptoms of" Alzheimer's disease for going on 10 years. After he was diagnosed (and lost his driver's license and his job), he felt himself being sucked into the vacuum of isolation and TV. As a retired psychologist, he found his outlet in writing about his experiences of slipping into dementia. He published his essays into a book titled "Alzheimer's from the Inside Out." He now speaks around the world about his experiences with Alzheimer's and how he has found purpose in his life by educating the general public about dementia, advocating for a new way of looking at dementia, and working with people who have the disease. Let me tell you, there is nothing like being lectured to about finding purpose in your life by a person with a disease like Alzheimer's to inspire you to greater heights (or make you feel really useless!!). You can read more about Richard on his web site (you can see his speaking schedule, which boggles the mind), and purchase his book.

If you have not had the privilege of hearing Richard speak, I hope you do at some point. It's one of my goals to bring him to Phoenix to speak some day (sponsors anyone???).

Here is Richard's email about Humanizing Dementia Care.

Hello

I'm trying to pull myself up by my own bootstraps (following the admonitions of the Loyal Opposition Republicans), but I'm having lots of problems. I haven't pulled off sending out a newsletter in almost three months! I'm still answering e-mails from late January! I can't seem to get away from trying to catch up to day, much less live in it. I've set some goals for myself for the future in hopes of pulling myself out of the sticky details of today and yesterday, and refocus my energies into taking what I have learned from my own life experience, and the shared life experiences of many many other folks walking in my dementia symptom filled shoes and translating it into a corporation. (After all isn't that what the Supreme Court and the Loyal Opposition believes? Corporations are just like human beings)? I would like to find a group of folks who are interested in forming an organization of, by, and for people living with the symptoms of dementia. It works, it works hard, it works well in many other countries I have visited. It should and indeed must work here.

There is lots of talk about helping us, but most of it somehow ends up being translated into fund raising efforts to find a cure for Alzheimer's Disease! There are far more smart people, far more dollars and cents, far more organizations dedicated to finding a cure than there are organizations, dollars and cents and smart people dedicated to finding ways to support and enrich the lives of people with dementia. There are far more organizations, dollars, smart people dedicated to helping carers cope with us than there are organizations, dollars, and smart people dedicated to supporting our need to discover purpose in our lives, to concretely discover ways to aid our efforts and need to live in the moment - to live in today.

From my perspective this whole dementia thing is ass-backwards. We are funding and focusing on tomorrow, on others who support us, and with what is left over in terms of money, time, staff, and effort we focus on people with dementia and their needs and wants. Shouldn't that be first, and when we all have our arms around these folks, then we look around for other crusades to lead, fund, and promote?

Given there are a finite number of dollars to spend on this tsunami of dementia, who should the first responders respond to first? Those who are not impacted by the tsunami, those who are caring for those who are being swept away by the tsunami, or those who are up to their noses in the dark waters of dementia that are sweeping across this nation and ultimately threaten all citizens if they live to be old-old? (Laura's comment: Richard knows well that there are people with early onset as he was technically a victim of early onset himself.)

I just don't feel a palpable sense/need on the part of our leaders in and out of government to change the way this dementia crisis is being addressed. It shouldn't be fixed because it would save us all money. It shouldn't be fixed because more people might get "it" (whatever "it" actually is)?

It should be addressed because it is a moral imperative of all to support those human beings who cannot fully support themselves by themselves. We sort of act that way with children, we almost act that way with injured veterans, we clearly act that way with our pets! And what about the 10+ million folks living with the symptoms of dementia? Whole human beings who have slipping cognitive skills? Isn't there a moral imperative to refocus, refinance, recommit, study, expand and change the way we deal/support them? There are a few more committees, a few more folks with dementia in advisory capacities, a few more hearings, a few more seats near the tables of power and change for us, but clearly there is no palpable sense/need to change.

The fear of getting dementia, of having to pay for others who have it, of becoming less and less human as the symptoms overcome you - these fears do raise money, do change some politicians minds, do fund an entire industry of researchers, do sell a lot of questionably effective pills, and do employ a few folks here and there -- but they unintentionally reinforce myths and stigmas about the whole human beings who are living with dementia, and they also inadvertently encourage people with dementia to hide in their own self made closets.

Following my own admonition, "stand up and speak up," I believe people with dementia need an organization run by themselves, for themselves. We need support from others to make this happen and keep it happening. I have a short list (another ha ha because nothing is short in my life) of folks who have already expressed interest in making this happen. I ask each of you to consider adding your name to the list.

Based upon conversations with others, I have some ideas of how to make this happen, how to fund it, and make it work, and make it keep on working way past my time and your time. I spoke with folks from Scotland, England, Belgium, France, and Germany about how they are/did/will organize themselves, what they did that worked and didn't work, and how it is now growing/working. I now feel comfortable in trying to make this happen here. It will become one of my three major goals for the next couple of years (For this organization, promote humanizing dementia care, and speaking up about what it's like to live with dementia).

I'm not yet through thinking and talking about what and how things should change, but I want to devote increasing time and energy into actually creating an organization dedicated to humanizing dementia care, dedicated to changing what ought to be into what is!.

Please, please think about you believe is needed to change attitudes, behaviors, funding, staffing, budgets, processes -- to change driven by a palpable sense of urgency -- to change because it is the right thing to do. Please, please consider joining me in forming and supporting an organization dedicated to, with, and by people with dementia. Become a difference maker. Don't just talk about what ought to happen, how it should happen and why it should happen. Make it happen Now!

Richard

In his email, Richard does not specifically call his approach "humanizing dementia care." But in a recent presentation that he gave in Zurich, Switzerland, he defined Humanized Dementia Care, which would form the basis of his organization. Here is the text from his speech:

First let me tell you what is not. It is not care that measure success by how long people live with dementia. It is a care that measures success by the richness of people's lives while they progressed through the stages of their dementia symptoms.

It is not care that claims to be person centered, but still keeps the same staff to resident ratio they had prior to announcing they were starting today person centered.
It is not care that consistently meets the needs of the organization and time permitting meets of the needs of its residents.
It is care that treats everyone, regardless of their stage of dementia as whole and complete human beings.
It is care that encourages and enables individuals to be responsible for themselves. To be partners in deciding what is best for them, what they want from others.
Humanizing dementia care puts the needs of people before the needs created by their delivery of medically based services.
It is care that enables rather than disables.
It is care that when necessary reables a sense of dignity.
It is care that enables folks to fully live in today, all day, every day, not yesterday.
It is care that creates a social network in which and through which people with dementia can identify and live each day with their own sense of purpose.
It is care that says Hello instead of good bye. I am not fading away. I'm neither half full nor half empty. I'm all here. I'm Richard! damn it.
It is care that seeks to first understand who I am today, not who I was yesterday or last week or last year.
It is care that constantly helps me live in today. Please support us all in our attempts to live... in the moment, this moment.
It is care that listens, that takes the time necessary for me to get my thoughts organized and formed into words we can both understand. Listen first to understand, then speak.

I'd like to hear your reactions to his idea and the concept of Humanized Dementia Care.
If you would like to familiarize yourself with what is happening in the field of dementia care in Europe, you can read a summary in my previous blog Tsunami, Rising Tide, Flood Watch or Chance of Rain: What is our alert level for responding to dementia?

Laughter Yoga Update

2010-02-18T09:12:00.000-08:00

Here's a link to a lovely article by an equally lovely and amazing lady, Jody Ross, who is THE Laughter Yoga leader for Lakeview Ranch. Read this article on the official Laughter Yoga web site to learn more about Laughter Yoga for people with dementia.

http://tinyurl.com/yg9qzs3

Enjoy!

Help for People with Early-Onset Alzheimer's

2010-02-11T20:18:00.000-08:00

Great news for people with early-onset Alzheimer's disease and their families. Today the national Alzheimer's Association here in the US sent out an email regarding a breakthrough with the Social Security Administration (SSA).

The SSA has announced that it will streamline the application process and decrease the wait time for benefits for people with early-onset Alzheimer’s disease.

I have heard that this process is slow and onerous and a real barrier for families to receive benefits when one of their family members is disabled with early-onset Alzheimer's and that some benefits are largely unavailable to people with early-onset as they are under age 65. To circumvent this issue, the Social Security Administration (SSA) has added early-onset/younger onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) and a way in to Medicaid for those under age 65.

What I like is that for the first time, Alzheimer's disease is being classified as a disease that causes a disability. Can this be one of the first steps in changing the stigma against Alzheimer's in general?

For detailed information, please see the Alzheimer's Association Web site.

The national Alzheimer's Association has been advocating for changes like this since 2003, so it's about time! Good work everyone!

Raising Awareness of Early Onset Alzheimer's Disease

2010-02-10T09:31:00.000-08:00

The family in this video decided to go public with their experience of Early Onset Alzheimer's Disease in the hope that they can raise awareness of this little known illness. The mother, Kay, got Alzheimer's when she was in her early 50s and has had it for a decade. She is a resident at Lakeview Ranch in Dassel, MN. Kay's daughters are in their 30s and have a 50-50 chance of carrying the gene that will result in them also starting to show symptoms of Alzheimer's in their 50s. Kay's mother also developed Alzheimer's in her 50s, so there is a definite genetic link for this family.

Watch this video and learn about one family's struggle with this debilitating disease, and pass on the link to other!

Tsunami, Rising Tide, Flood Watch or Chance of Rain. What's Our Alert Level for Responding to Dementia?

2010-02-03T14:33:00.000-08:00

January is Alzheimer's Awareness Month in Canada. OK, so it's February and I'm a little behind the times, but it took me a month to get through the report by the Alzheimer's Society of Canada, called Rising Tide: The Impact of Dementia on Canadian Society. Click on the report name to get to the Web site and download it. There is a much shorter Executive Summary that is easily digestible in 10 minutes or less.

Rising Tide was released by the Alzheimer's Society of Canada to mark Alzheimer's Awareness Month. Its purpose was to raise the national consciousness about the burden that dementia will place on the economy and the health care system over the next 30 years and to make recommendations to the Canadian government about how to address the issue. The report was two years in development and makes some excellent suggestions that the Alzheimer's Society hopes will prompt the Canadian federal government to create a national strategy for addressing dementia.

"Report Shmort," you're saying. Yes, I know, it's another report. It made headlines in the Canadian newspaper the day it was issued and then, not a blip. It has all the scary figures in it -- the number of people estimated to be diagnosed with dementia in Canada is expected to more than double in 30 years, from 480,600 to 1,125,200 (remember that Canada might be a big country but has a relatively small population of 33.3 million people, so that's approximately 1.5% of the population that has dementia now). The report projects that demand for long term care beds will grow from 280,000 in 2008 to 690,000 in 2038. And when they add up the total direct costs of dementia, plus the total unpaid caregivers opportunity cost, plus total indirect costs, they arrive at a total economic burden of $14,924,030,467 in 2008 and $152,639,495,005 in 2038.

Staggering figures. Kind of makes you want to crawl under a rock, doesn't it? So I'm thinking that because we are all so scared into paralysis, the report is probably gathering dust on someone's shelf right now as the government deals with problems they can wrap their heads around, such as whether or not to open parliament again in March (sorry, you have to be Canadian to understand!).

But this report is worth a read, and here's why. In determining What Can Be Done (prevention and support, more about that later), the report first studies What Has Been Done Elsewhere and what we can learn from their experiences. "Elsewhere" includes each of the Canadian provinces and a number of other countries. What stood out for me profoundly, and yet did not surprise me in the least bit, is that Elsewhere does not include the USA, because -- other than a few notable bright spots -- the USA is not on the leading edge, the bleeding edge or the blunt edge or any edge when it comes to a national strategy for dealing with dementia. Instead, the Canadians looked towards Australia, Norway, the Netherlands, France, Scotland and the UK for specific plans or frameworks that are in development or have been implemented.

The report gives the Canadian federal government kudos for providing financial aid of up to $4,095 to caregivers who are caring for elderly parents or grandparents, and caregivers may claim medical expenses of up to $10,000 per year. In addition the federal government has a Veteran's Independence Program that provides homecare and support to thousands of Canada's military veterans, supporting them in living independently for as long as possible, and has also increased funding for research. Otherwise, there are no national programs in Canada for dementia care, and the report surmises that development of policy in this area is likely impeded by lack of clarity as to which government department is to take responsibility for dementia policy.

Without getting too far off track, I want to mention that health care in Canada is the responsibility of each province, rather than the responsibility of the federal government. Each province has its own health care system. As a result, while the federal government does not have a centralized strategy for dementia, most provinces have developed programs. For example, British Columbia on Canada's west coast developed the BC Dementia Service Framework to guide service delivery for people with dementia. However, the provinces also have the problem of no one department taking responsibility for dementia and as such, their policies and frameworks also tend to be disjointed.

Which brings me back to the other Elsewheres. What are they doing right in Australia, Norway, the Netherlands, France, Scotland and the UK? The report divides the dementia-specific policies of the countries into four categories: Research, Improved Care, Caregiver Support and Workforce.

Most countries have increased funding for research, although the UK has increased funding for "dementia care research" in recognition that we cannot count on a cure for the disease and thus must learn how to better support people with dementia in living their lives.

Under the heading of "Improved Care" we have early intervention, expanded psycho-geriatric consults, memory community centres, peer support via the Alzheimer's Cafe concept, cluster housing with home automation and other adapted living facility concepts, person-centred policy development, increased numbers of case managers (Case managers? Can you imagine a world where every person with dementia is assigned a case manager?), integrated access points to the care system, in-home specialist teams, care hotels, easing access to care, better care for people with dementia in general hospitals and development of a comprehensive model of care.

Improved caregiver support includes respite programs, training, home-care support, caregiver rights and support for returning to work, health monitoring of caregivers, and carer needs assessments and strategies.

Finally, the category of Workforce deals with improving the skill set of health care professionals: developing new competencies such as case managers and gerontology assistants, ongoing professional development and improved collaboration amongst the various types of professionals serving the dementia community.

The report highlighted unique strategies and programs in these countries, including:

The concept of Alzheimer holidays, hotels and farms in the Netherlands (note that this is not just a respite program for caregivers. These are holidays for people with dementia. Who says a person with dementia doesn't need a holiday!)
The call for a national priority in the UK with cross-governmental strategy development.
The Dutch concept of building a national strategy based on a foundation of consultations with people with dementia and their caregivers.
The goal of making dementia a European priority. Not only does each country have their own Alzheimer's Society, but the European Union also has its own Alzheimer Europe organization.

Based on the information gathered about programs Elsewhere, the Canadian Alzheimer's Society recommended five components for a comprehensive National Dementia Strategy:

Accelerated investment in all areas of dementia research.
Supporting informal caregivers through education and dollars.
Recognizing the importance of prevention and early intervention for dementia on the part of health care professionals and the general public.
Greater integration of care and increased use of accepted best practices in chronic disease prevention and management, community support and community care coordination.
Strengthening the dementia workforce through increasing the number of specialists, improving diagnostic and treatment capabilities and training.

These recommendations boil down to two words: prevention and support. By treating dementia as a chronic disease rather than an acute condition, preventative measures can be taken and the disease can be managed (rather than the current "take a pill and call me in 6 months" attitude that prevails). Support entails an integrated model of community care that aligns primary care and acute care with a network of community support services. The support services already exist in many Canadian centres, so this vision could become a reality.

I liked the title of the Canadian report: Rising Tide. In Canada they have recognized that the tide of dementia is rising and want the federal government to take action before the tide becomes a tsunami. Swimming lessons are in order for everyone. However, note that the report is a report of the Canadian Alzheimer's Society, not a federal government report; it's not national policy -- yet. There is no national strategy -- yet.

In Australia, Norway, the Netherlands, France, Scotland and the UK, they acknowledge that a tsunami is coming, and so have taken measures to protect themselves, strengthen their system, build lots of life boats, put tsunami warning systems in place and weather the storm.

In the USA, I am afraid we are still at the "Chance of Rain" stage, with the knowledge that we really ought to at least be watching for the flood. We'd really rather not consider that it's a rising tide, and if it's a tsunami, well, unless we get our collective act together, we're in big trouble. Better move the higher ground or learn to swim, fast.

Update on the Omincare/Risperdal/Johnson & Johnson Debacle

2010-01-27T17:54:00.001-08:00

Here is a great article in today's Boston Globe, called Kickbackers' motto: "Do no harm" (to profits). It provides some interesting background information about Omnicare and Johnson & Johnson and the complaint regarding kickbacks for Omnicare for pushing Risperdal on unsuspecting elderly patients with dementia.

In short, some states do not allow the independent pharmacist upon whom doctors in nursing homes rely for recommendations to work for the company that pushes the drug. New Jersey is one of them. Other states, including Massachusetts, do not have such a division of duties, allowing the so-called independent pharmacist consultants to be an extension of the pharmaceutical company's sales force.

In addition, the article recognizes that inadequate staffing levels is an underlying problem leading to the use of "chemical restraints" to keep unruly residents in check and allowing staff to deal with other issues. Do you THINK?

Give the article a read. I'm just glad the complaint is still making headlines! P.S. The comments to the article on boston.com are worth a read as well.

Coathanger

2010-01-27T10:02:00.000-08:00

Yes, "Coathanger" is an odd name for a song about an elderly aunt with Alzheimer's, but if you listen to the lyrics, you'll get the name. This is a beautiful song by Jeffrey Straker, a Canadian singer. The song is about Jeffrey's experience visiting his aunt, and how he wishes he had talked to her about her life before she lost all her memories to Alzheimer's disease. I love it.

I'd like to insert my own caveat here... while you're wiping the tears from your eyes at these touching lyrics, please remember that "Mary" is still very much alive and although she might not remember her life or Jeffrey's name, there is lots that she can do, and lots to celebrate.

Johnson & Johnson, Omnicare, Risperdal and what it means to you

2010-01-18T09:49:00.000-08:00

I just about fell off my chair Saturday morning when I read in the New York Times about Johnson & Johnson giving kickbacks to geriatric pharmacists to encourage doctors to prescribe Risperdal for their patients with dementia. I knew that there were issues with "Big Pharma," but I could not imagine, or did not want to imagine, that the issues were so blatant, with so much "chutzpa" on the part of the pharmaceutical companies that they would actually give kickbacks for prescriptions.

According to the complaint brought against Johnson & Johnson by two ex-employees of Omnicare, "Johnson & Johnson, based in New Brunswick, N.J., and two of its subsidiaries, Ortho-McNeil-Janssen Pharmaceuticals and Johnson & Johnson Health Care Systems, paid tens of millions of dollars to induce Omnicare to buy and recommend Risperdal for elderly patients as well as the drug maker’s prescription pain relievers Duragesic and Ultram, and the antibiotic Levaquin."

Some explanation is in order for us laypeople, so let's pull this statement apart.

Risperdal is an antipsychotic medication prescribed for people with schizophrenia. Schizophrenia is a debilitating mental disease affecting approximately 1% of the US population, or about 2 million people. According to about.com, symptoms include: confusing, or even shocking, changes in behavior; sudden onset of severe psychotic symptoms (acute phase of schizophrenia); psychosis (state of mental impairment marked by hallucinations and/or delusions -- being "out of touch with reality"); social isolation or withdrawal; unusual speech, thinking, or behavior.

One could be forgiven for thinking that these symptoms sound suspiciously like some of the behaviours associated with dementia, because they do. For people with Schizophrenia, medications such as Risperdal reduce psychotic symptoms and allow people with this disorder to function better in their day-to-day activities. Side effects of Risperdal include sudden involuntary movements of the head, neck, arms or eyes; dizziness; hyperactivity; fatigue; abdominal pain; fever; and nausea.

So the logic could in fact follow, that if elderly people with dementia exhibit some of the same symptoms as people with Schizophrenia, and if Risperdal helps to lessen the psychosis in people with Schizophrenia, then Risperdal would be a good thing to prescribe for people with dementia. Right? Wrong. Because one other side effect of Risperdal is that it can kill people with dementia. I downloaded the prescribing information from the Risperdal.com web site, published by Janssen (a subsidiary of J&J), and right there it says, at the top, in big bold letters:

WARNING: INCREASED MORTALITY IN ELDERLY PATIENTS WITH
DEMENTIA-RELATED PSYCHOSIS
See full prescribing information for complete boxed warning. Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. RISPERDAL® is not approved for use in patients with dementia-related psychosis.

Hmmmm. Well, in fairness to all, the complaint covers the years 1999-2004, while Johnson & Johnson was not required to carry the warning against use with dementia patients until 2005. But it IS still prescribed, a lot. My mother was on it. We kept taking her off of it. Her nursing home kept putting her back on it.

I looked up the other medications mentioned in the complaint. Duragesic is a powerful pain-killer, administered by a patch for those dealing with chronic pain. Ultram is a narcotic-like drug used to provide extended pain relief and has its own lovely side effects. What stood out for me about Ultram is that it should not be taken by those who have ever been addicted to drugs or alcohol. I'm guessing no one would have bothered to ask a family care giver about the patient's previous drug and alcohol use prior to prescribing that drug. It also should not be given to people who have recently taken anti-psychotic drugs such as... Risperdal. Finally, Levaquin is an antibiotic used to treat skin infections, bladder infections and the like. You can google these drugs... there is lots of information about them on the Internet.

OK, so now who is Johnson & Johnson? As the New York Times article said, they are based in New Brunswick, NJ. It is the second largest pharmaceutical company in the world, and make such popular brands as Tylenol, which they have had to recall due to unusual smells coming from the bottles. Their revenue in 2008 was $63.7 billion, with net income of $12.9 billion. They have over 118,000 employees and are a holding company for more than 250 companies operating in just about every country of the world. Their web site is http://www.jnj.com/. Actually, if you take a look at all the products they sell, you will be as amazed as I am as to the company's influence on our lives.

Now on to Omnicare. Who are THEY? Omnicare is the largest provider of pharmacy services to nursing homes in the United States and Canada. They provide medications to 1.4 million elderly nursing home residents.

Pharmacy services? Yes, this was a new one on me too. You mean the nursing homes don't just go to Walgreen's with a prescription like the rest of us? It gets better.

Omnicare provides pharmaceuticals and related ancillary pharmacy services to long-term health care institutions. Its clients include primarily skilled nursing facilities (SNFs), assisted living facilities (ALFS), retirement centers, independent living communities, hospitals, hospice, other health care settings and service providers. According to their web site, customers of Omnicare Senior Pharmacy Services benefit from personalized service provided by each of its local pharmacies, including specialty unit-dose packaging, delivery, 24-hour/7-day availability, pharmacist consulting, medical records, infusion and respiratory therapy, and medical supplies. OK, that sounds legitimate. So what did they do wrong?

As far as I can tell from their web site, Omnicare acts as a middle person between the pharmaceutical companies (I assume they represent more companies than just Johnson & Johnson) and the nursing homes, assisted living, independent living, long term care facilities and memory care units. They purchase medications from the pharmaceutical companies, repackage them in easy-to-understand packaging that helps to monitor and administer dosages, and then sell them to the nursing homes. The company has Omnicare Consultant Pharmacists who educate the nursing home doctors and staff in what medications are appropriate for the various illnesses experienced by the elderly. The nursing home staff can consult directly with Omnicare to determine appropriate medications, and then purchase the medications from Omnicare.

Business-wise, the idea is sound: Johnson & Johnson does not need to have employees that specialize in geriatrics and in distributing to nursing homes. They outsource that function to Omnicare. The nursing homes don't need to wade through the multitudes of medications available but can hone in on just those for the elderly. Omnicare even provides a drug "bible" of sorts, the Omnicare Geriatric Pharmaceutical Care Guidelines^®, which they say is the "cornerstone of their effective management of pharmaceutical care of the elderly." The catalog lists drugs as "preferred, acceptable or unacceptable" and provides cost information, "making it easy for a physician to choose the most cost-effective among clinically equivalent or superior drugs." I wonder what rating Risperdal gets? Preferred? Acceptable?

But what happens when the pharmaceutical company starts paying the consultant pharmacists to promote a particular drug directly to a nursing home doctor? There's the problem.

It has long bothered me that one of the prime sources of education for physicians about the medications they prescribe is the companies that create the drugs in the first place: the pharmaceutical companies. Doctors don't have a lot of time to take intensive classes and to keep up-to-date with all the new medications available. So, pharmaceutical companies provide information sessions to doctors, in convenient locations such as hospitals, to introduce them to new medications. Their representatives make regular visits to doctors' offices, bringing samples and information on the latest medications. You must have heard about the trouble pharmaceutical companies have gotten into in the past, providing education sessions in luxury resorts and paying for the doctors to attend. If our kids go to the local mall, and one store is handing out candy with every t shirt purchase, and the other store is handing out nothing with every t shirt purchase, which store do you think they will purchase from? Which store will they tell all their friends about?

In a similar fashion, Omnicare pushed the merchandise being handed out with candy. According to the NY Times article, "The complaint charges that Omnicare’s pharmacists engaged in intensive efforts to persuade physicians to prescribe the drugs [Risperdal etc.] from 1999 to 2004, a period in which the pharmacy’s annual purchase of Johnson & Johnson medications nearly tripled to more than $280 million, from about $100 million. During the same period, the pharmacy’s annual purchase of Risperdal rose to more than $100 million."

Here's what is really awful though. In an effort to ensure that elderly nursing home residents are not over-medicated or medicated for the purposes of restraining them or making them more compliant, nursing homes are required by the federal Department of Health and Human Services to have each resident's medications reviewed monthly by an independent consulting pharmacist. Johnson & Johnson targeted those so-called "independent" consultants who were entrusted with reviewing the medications and with providing advice to physicians about proper medications for the elderly. Of course I have a problem with these "independent" consultants working for the company that is distributing the medications.... don't you?

Johnson & Johnson is not alone in being rapped on the knuckles for using the population of vulnerable elderly nursing home residents as a dumping ground for their drugs. According to the same NY Times article, "Last January, the drug maker Eli Lilly pleaded guilty to a misdemeanor and paid $1.415 billion to settle criminal and civil charges that the drug maker had marketed its antipsychotic Zyprexa for the treatment of elderly people with dementia."

So what does this mean to you, Care Partner, with a loved one with dementia in a memory care unit?

If you are not doing so already, request a list of the medications that your loved one is currently prescribed. Then research each and every medication on that list. Look in particular for Risperdal and other anti-psychotic drugs Google them. Understand why they are used and what the side effects are. If you do not understand why your loved one was prescribed a certain medication, query the on-site nurse or physician. You can ask for him or her to be taken off a medication if you feel it is wrong. From that point on, ask to be consulted before your loved one is prescribed any additional medication. Review medications monthly just in case something slipped through without your knowledge.

The other two things that you need to understand are with regards to the behaviours that your loved one with dementia are exhibiting.

Are they sleeping more? Seem more confused than ever? Dazed? Dizzy? Check their medications. The side effects of many of the medications used as anti-depressants and to control behaviour in people with dementia are confused for symptoms of dementia. At one point, my mother was so unresponsive I thought she was dying... nah, it was just the sleeping pills being used to keep her drowsy, thus making her "less trouble" for the hospital staff.

Second, understand that your nursing home DOES have an alternative to using medications to control behaviours (FYI, while some behaviours can be violent and present a danger to other residents, "behaviours" also include anger and calling out for help... perhaps we all need to be drugged!), and so do you. Lakeview Ranch in Darwin, MN uses positive communication methods and validates the feelings of the person with dementia, recognizing that there must be an underlying cause for the behaviour. They have had huge success in reducing negative behaviours without the use of medication, and have reduced the use of anti-psychotic medications by 36% in their residents.

Swapna writes about gift-giving

2010-01-18T09:37:00.000-08:00

I came across a beautiful blog by Swapna Kishore who lives in Bangalore and who is a caregiver for her mother with dementia. In the post that I read, she mentioned the articles about gift giving that both myself and Lori La Bey had posted recently, and provided her own response. She goes on to talk about how giving gifts to her mother has changed over the years, from childhood until now. Please read this very touching and poignant blog, that packs a whammy at the end.

It also never ceases to amaze me how technology has made our world smaller. Imagine that me, sitting here in Phoenix AZ, was able to reply to a blog post by Lori, who is in Minneapolis, MN, both of which were commented on by a Swapna in Bangalore. Surely our ability to seamlessly transcend borders can lead to a world without conflict...

Laughter Yoga Proves Laughter is the Best Medicine

2010-01-11T19:40:00.000-08:00

Note: All photos in this blog post are credited to Cathy Greenblat, photographer and author of Alive with Alzheimer's.

Names have been changed.

As many of you know, I visited Lakeview Ranch in November, along with Laurence and Kathy Harmon of Great Places and the photographer Cathy Greenblat.

Cathy was on a mission when she visited Lakeview. Come hell or high water, she was intent on having a Laughter Yoga session with a group of Lakeview residents with dementia and had arranged for a lady to come to Lakeview Ranch to lead the session. Judy Berry, the owner of Lakeview Ranch, was all for it, as Judy is open to any new activities that will help her residents do and feel their best.

"Laughter what?," you might ask.

I'll start off by telling you that there are 6,000 Laughter Yoga groups in 60 countries around the world, so you know it's the real thing. Started by Dr. Madan Kataria and his wife Madhuri Kataria, Laughter Yoga is built on the principle that the body does not know when laughter is genuine and involuntary, or when laughter is fake and forced; the psychological and physiological benefits to the body are the same. Laughter lowers the level of stress hormones (epinephrine, cortisol, etc) in the blood. It fosters a positive and hopeful attitude, reduces stress and lessens feelings of depression and helplessness.

Laughter Yoga makes people laugh through a series of exercises to simulate laughter, intermingled with deep breathing exercises that might be familiar to those who practice yoga. Eventually though, participants are having so much fun that they can't help but laugh naturally. You won't find any lotus positions here. Instead you will find yourself miming daily activities such as answering the telephone, eating or riding a bicycle. You will exaggerate your actions and accompany each action with sounds, such as HO HO HO or hahahahahah. And at the end you will find yourself less stressed and much more positive. I was on a high for at least two days after our Lakeview session.

So why would you do Laughter Yoga with a group of people with dementia, some of whom are in wheelchairs and many of whom are fairly unresponsive? Well, there was something about the type of movement and the vocalizations that just seemed to make it an ideal exercise activity for a group of people with dementia. First, people do not need to be able to walk around or lie on an exercise mat to participate. Most of the exercises are done sitting in a chair, with the occasional exercise for those who can walk around slowly. Second, the movements are exaggerated as are the facial expressions, making these great connection tools between participants. Third, no long soliloquies are needed; just a "ho ho" if you can manage it. In addition, participants don't need to be able to remember anything: no objects, no memories, no long complicated strings of instructions, no reading... even if you are not quite sure what a "telephone" is and why you should answer it, (and better yet, why you should answer one that clearly doesn't exist), the actions only need to be mimicked, and everyone else seems to be having fun... so why not join in?

What also makes Laughter Yoga an ideal activity for people with dementia is that everything takes place in the moment and is geared towards ensuring a feeling of success and accomplishment for all participants. Most importantly, the activity reduces stress and depression without the use of medication. The positive "I can do" feeling lasts for hours afterwards, very important for people with dementia. How do you feel after having a had a riotous laugh? Pretty good, right? People with dementia feel that too. Caregivers of people with dementia who have participated in regular yoga sessions report that their loved one is more "present" for a couple of hours afterward. Now add laughter and imagine the impact!

A wonderful Laughter Yoga group leader by the name of Jody Ross from Minneapolis led our group at Lakeview Ranch. Young, approachable, positive and full of infectious energy, Jody was the ideal person to lead. Eight residents with dementia participated, along with Judy Berry, a few caregivers and nurses, a visiting family member, Laurence and Kathy Harmon and me. Cathy Greenblat alternated between joining in and taking photos, while Judy's husband Julius shot some video footage from the sidelines.

We sat in a circle, some in chairs and some in wheelchairs. Jody led us through warm-up exercises and we all felt a little silly, but willing to try more. We weren't sure how all this would pan out. Would the group have the patience to sit through it? Would they rebel? Would there be a mad dash for the doors? Would they start yelling at Jody? Everyone has sat through a painfully long group session, presentation, play or comedy or singing act where you just know it's not working out, to the point that it gets embarrassing and you just want it all to end and end quickly. That's not what happened here. Jody was prepared for a 20-minute session. But no one wanted to stop. Everyone was having too much fun. We went for almost an hour before we started to get the feeling that we'd all had enough; better to leave the party while you're still having fun!

I was seated between Chuck and Mel. Both had been part of hardworking farmer families, living on local farms and engaging in care for livestock, crops, family life and fishing. Both Chuck and Mel have what I would term "moderate" dementia. They were well able to carry out a conversation and Chuck in particular was very mobile and liked to be busy. They just weren't always living in the same reality as other people. Cal was sitting a few seats down. Cal had once had a brain tumor removed with the knowledge that the operation could eventually cause dementia, which it did. A tall strong man, Cal was (you guessed it) a one-time farmer, now pretty much restricted to his wheelchair and prone to dozing off in the middle of things.

Sitting next to Jody, the leader, was Anna, who liked to sit in her chair and pick up imaginary threads. I've included some photos here, taken by Cathy Greenblat, and in particular you can see the transformation of Anna, who started off thinking that this was all most disagreeable, and ended up hugging Jody!

I know instinctively that activity, particularly activity that promotes one-on-one interaction, can "bring back" a person with dementia, even if only temporarily. But even I was amazed at the effect of Laughter Yoga on this group, that started off sitting quietly, wondering what was going on, or dozing, or gazing disagreeably at the rest of the group.

In particular I recall Chuck and Mel doing the fishing exercise. During this exercise participants lean forward in their chairs and mimic the actions of "casting out" their fishing line. While they do it they shout "ho ho ho" or something like that. Then they "feel" something nibbling at their line and reel it in, while shouting "ha ha ha." When they land their "fish" they hold it up and laugh at it because it's so teeny, while gigggling and pointing at it and looking at everyone else's fish -- "hee hee hee!!!"

Of course anything to do with fishing went over well with this group of expert fisherpeople, and even Cal woke up for this one. In fact, Cal was alert for most of the time. In between exercises, Jody would have the group say "Ho Ho, HA HA HA" as a breathing exercise disguised as laughter.

At one point, Mel noticed a group of staff members standing behind some glass doors, watching us, and she leaned over to me and say "They must think we're crazy!" I loved this. Not only was Mel saying something so ironic, because it is the misfortune of people with dementia that most of Society WOULD call them crazy, even when not doing Laughter Yoga. But moreover, this person with moderate dementia noticed some people standing behind a glass door, knew that they were watching her, formed an opinion about how she felt about people watching her (didn't much like it), and made a comment to laugh it off. That's a lot of neurons processing. She was indeed coming alive.

Here is my most favourite moment. Anna, as I mentioned, had on her disagreeable face. I know this face well as it's the face my mother wore when she was unsure of the whole situation and wanted to hide her uncertainty and vulnerability behind a facade of distaste. Anna is fairly immobile, so she was in the circle and wasn't going anywhere, and she did not talk much at all. However, as the session progressed, she started to get more and more into it, and attempted some of the actions along with everyone else, and even started to make some of the sounds. Then Jody started the "Amazing" exercise. Part of Laughter Yoga is affirmation... affirming the value of each person in the room as a person with something important to contribute. This is not expressed explicitly, but is an obvious byproduct. As such, those of us who were able to get out of our chairs and walk around the circle, were to go to each person in turn and do the following: Lean down (important to get at eye level with people with dementia), point at yourself and yell "I'M AMAZING!" Then, point at the other person and yell "YOU'RE AMAZING!" Finally, put your arms in the air as if you were doing the Wave in a stadium and yell "WE'RE AMAZING!!" Then go on to the next person. Both people are doing this at the same time, so around the room you have alternating twosomes pointing and yelling about being absolutely amazing. When I went round to Anna, not only did she do the pointing, but she YELLED, and I mean YELLED, "I'M AMAZING, YOU'RE AMAZING, WE'RE AMAZING!!!!" Wow. Yeah, let's just write off all people with dementia, ok?

Here's a picture of Anna doing the AMAZING routine with Kathy Harmon. Amazing, huh?

Even George, sitting with his daughter, who had not woken up for the entire program, gave a laugh at the end. Every moment is precious; that moment meant the world to his daughter and to us, because for one second she had her father back.

After the whole upbeat feeling started to wane a bit, Jody pulled the session to its natural conclusion, with everyone agreeing that they wanted to do it again sometime.

At the end, Jody thanked everyone for participating, and in fact, I seem to recall going around and looking each person in the eye, bowing and saying "Thank You," and everyone saying "thank you" in return. Too often we assume that the person with moderate to advanced dementia does not know what's going on and so does not need to be addressed directly; we tend to talk around and over them. Saying "thank you" to each person in the group is important, because people with moderate to advanced dementia need to know that they have contributed something positive to your life, and that the "thanks" is genuine.

Mel and Cal, who was very awake by this time, decided it was time for coffee. Coffee and rural Minnesota go together like chocolate and peanut butter, so coffee was just a natural thing to have after Laughter Yoga. I went in search of coffee, poured two mugs and brought them over to.... Mel and Chuck. Sorry Cal. And who has memory loss here? I'll never forget his disgruntled look sitting over at the other table all by himself. Ahhh the guilt.

Jody, Judy, Kathy, Cathy, Laurence, Julius and the nurses and caregivers had a bit of a confab afterward about what had worked and what didn't work. I was busy pouring coffee (or rather, forgetting to pour coffee) so I missed out. However, between us we are putting together recommendations on how to adapt a Laughter Yoga session for people with dementia. To the best of our knowledge (and to Dr. Kataria's knowledge as Cathy had been in direct contact with him) it was the first time Laughter Yoga had been done with people with dementia as participants. But I can assure you it won't be the last.

If you are interested in learning more about Laughter Yoga, go to the main Laughter Yoga web site at http://www.laughteryoga.org/. Click on the "Find Clubs" link to find a Laughter Club near you. To date there is no central "Laughter Yoga for People with Dementia" resource, but we are working on it... However, you may be able to find a leader who has experience working with this population or with seniors. Before asking someone to lead a session for your group of people with dementia, I urge you to attend one or two sessions with the proposed leader and talk about the special needs of your community.

Love Really is the Greatest Gift of All

2010-01-03T19:38:00.000-08:00

On December 25, Lori La Bey of Senior Lifestyle Trends posted a very personal and insightful blog on her web site www.alzheimersspeaks.com. Her mother is in the later stages of Alzheimer's disease and is fairly unresponsive. She lives in a long term care facility and has for quite some time; I am in awe of Lori and how long she and her family have been dealing with the disease.

On her blog posting entitled Gift Giving Another Casualty of Alzheimer's Disease, Lori writes about her decision not to give her mother a present this Christmas. Lori dug out her driveway from the most recent snowstorm and visited her mom on Christmas Day, but knew that if she went inside after shovelling to warm up, she wouldn't go; would her mom even miss her that day? Would she mind if her Christmas card was a day late? I should add that Lori recounts in her blog about the years when her mother did respond to and appreciate the gifts she brought and in comparison to those days, her mother is not responding to gifts any more.

Lori's post was so compelling that I started to write a comment, but when the comment began to get longer than what is normal and polite, I thought I had better respond via a posting in my own blog. I wrote to Lori and cleared this with her. I know I'm a little late for Christmas but opportunities for giving gifts to our loved ones with dementia come up all year long, as do opportunities for struggling with our own decisions, conscience and guilt.

While I think you ought to read Lori's blog before reading this response, I'll just sum up Lori's feelings. Lori DID go and visit her mother that day. She considered buying flowers but then realized that she would be buying them for herself, not her mom, who would not remember that the flowers were for her or who they were from or what they were for. Lori felt that the flowers would make her "look" like a caring daughter but had nothing to do with how much she cares, how often she visits, or the quality of her visits. We've all done the last minute present thing to avoid walking in to someone's home empty-handed, particularly on a day designated for extreme gift-giving. It makes us look good and feel good, and, if we have chosen well, brings some joy into the recipient's life. But to make the decision NOT to bring a present?

Lori writes about the sadness she feels at not buying a gift for her mother. There is no joy in giving her a gift at this stage of the disease. Lori sees gift-giving as another tool in our vast caregiving toolkit, a way of connecting with our loved one with dementia. But when the gift fails to provide that connection, then the question is: what is the gift worth? So she made the difficult decision to stop. Alzheimer's disease stole the gift of gift-giving from Lori. However, Lori realizes that the true gift that she brings her mother every day is the gift of herself and her love, and that this gift needs no instructions, no commentary, no response, no wrapping paper.

But at the end of her post, I was still stuck with the question: So why stop giving gifts? I wondered if Lori had fallen into the trap that most of us fall into at one point or another in our journey with dementia, that of trying to demand the same response now that we would have expected from our loved one pre-dementia.

Now you need to know that I also stopped giving presents to my mother, especially at Christmas. I'd decided that she probably didn't know it was Christmas anyhow, and seeing as I was living far away and wouldn't even be able to deliver the present myself, it would just be confusing for her to be given this random gift from someone she didn't remember (and wouldn't remember even if I was standing right in front of her!). I used to send her baskets of goodies via a delivery service for Mother's Day, her birthday and other special days, and I stopped that eventually as well. Things got stolen and misplaced; it was a waste of money.

Now, in retrospect, with what I know now -- and if I had been living closer -- I would never have stopped giving gifts. I would give a gift every time I went, and here's why.

When a loved one has Alzheimer's or another form of dementia, one of the things that a caregiver needs to realize, and realize it quickly in order to stay sane, is that everything that used to be, everything that you used to measure yourself and your relationship with that other person against, every way in which you used to measure time, response, emotion... everything... has changed and you must change with it.

If you give a gift to a person with dementia and five minutes later he or she doesn't remember who gave it or what it's for, you have to be OK with that. If you don't feel good after giving the gift because you didn't get recognition for it, too bad. Perhaps for one minute, or one second, they DID know and it brought them joy, but now it doesn't. Oh well. You have to drop all of your preconceived notions about what you want and what you expect and then, just go with the flow and most importantly, whatever happens... don't take it personally. All of the questions you may have asked yourself years ago after giving a gift, such as "Did he like it?"; "Does she think I'm an idiot because I gave her socks with pink hearts on them?"; "Does he love me less or more because of this gift?"; "Have I done everything I could -- perhaps I should have sprung for the 100% cotton shirt instead of the purple polyester one that was on sale?" -- you have to drop them. They just don't apply anymore. Yes, OK, for one fleeting moment your loved one MIGHT think something along the lines of "Who is this person and why did they just give me this strange thing that I am now supposed to put on me?" but the thought will be fleeting and will not reflect on you personally (especially if they don't remember who you are!).

A person living in the later stages of dementia is living in the present (and by the present, I mean NOW, this second) because there is nothing else. As a caregiver, you need to step into this reality and realize that all that matters is Right Now, not five minutes ago, and not half an hour from now. If you were able to bring joy into their Right Now, then you have done something wonderful. If, for one second, you were able to make them think, to use their cognitive abilities, to feel curiosity, excitement, wonder, by giving them a gift that they (with your assistance most likely) need to open, then you have increased the quality of their life for that one second. And because that one second is all that there is, then you have done everything.

If you feel as if you are bringing a gift just to make yourself feel better (less guilt, for example), then bring it anyhow. So what? If you're doing it because you think it will make you look like a better son or daughter, then bring it anyhow. Doing something to make yourself feel better is just fine.

Perhaps you can alleviate your guilt about making yourself feel better by bringing something useful such as clothing (which you probably have to supply anyhow), soap, lotion, toothpaste, a favourite food or drink. Bring a mini-album of family photos. Bring a picture to hang on the wall. Bring a stuffed animal. Bring a flowering plant. Bring a funny hat (OK, not so useful). Bring a book of songs that you could sing together, one song at a time when you visit. I think that anything that can provide some sort of stimulation is good (a flowering plant or a picture to provide visual stimulation, for example) and something that demands interaction is even better.

And this is where Lori's opinion and my opinion on this matter of gift-giving actually converge.

Lori writes that she needs to accept and appreciate the gift of her self, a gift that is simple, easy, needs no direction or comment. She says "Our delivery is the important thing with this gift. Our attitude. Our love. Our compassion." Our delivery... that's the key. And she is so right.

What people with dementia need from us, more than anything else, particularly in the later stages when it is so easy to give up on attempting human interaction, is, human interaction.

One-on-one, get down on their level, look them straight in the eye, hold their hand, step into their reality, give them a hug...interaction.

Human interaction is simple, easy but actually it does need some direction, at least for the person without dementia. For the person without dementia, meaningful interaction is probably the most difficult thing to do... probably the hardest gift to give of all (everyone who has ever visited a person in the later stages of dementia knows how hard it is to know what to do and what to talk about during your visit).

Because what you are doing is loving and giving unconditionally, without expecting anything in return except the knowledge that you are doing the best you can and are probably doing the best thing that you can do for that person, in their one second.

So Lori, as you know, you haven't stopped giving gifts. You are bringing a gift to your mom every time you see her, and now you are giving the gift of your experience and knowledge with the countless millions of caregivers who will be following in your footsteps, asking the same questions you are asking and feeling the same things you are feeling. So stick a bow on your head; your love is the greatest gift of all!

Second Random Holiday Thought: Visit a person with dementia in a care facility, even if you don't know them

2009-12-17T09:57:00.000-08:00

One of my favourite things to do is to visit a memory care unit. Weird huh?

When I visit a facility, I'm looking primarily for innovative care, homelike surroundings a'la Lakeview Ranch or a "normal" environment as can been found at Silverado. I'm looking for interactive activities that engage the residents and challenge them to use and expand their cognitive abilities. But most of all, I just like visiting the residents.

Most residents in memory care probably have family members that visit them on a fairly regular basis, although there are many that have family living far away. They are also surrounded, for the most part, with caring people who work at the facility. However, most people with dementia are living in the moment; if one of their children visited them yesterday, it might as well have been last year. In addition, unless the home has achieved the extraordinary staffing ratio of Lakeview (3 residents for every caregiver), then it's difficult for staff to spend too much time interacting one-on-one with residents; they just have too much to do and so little time to do it. Thus, most residents are lonely! Very lonely.

I firmly believe that one-on-one interaction, or activities that demand interaction from the person with dementia, are what can bring a person with even advanced dementia alive, even if it's temporary. However, it's ironic that this is the kind of interaction that is lacking in most memory care facilities. Hence you end up with lonely seniors lined up in wheelchairs in the hallway or gazing at the TV in the community room(yeah, you know what I'm taking about).

But here's what you can do. That home you spotted the other day when you were searching for a Starbucks? Just go and visit. Call the facility's administrator, community outreach person, or activity director first to be cleared. You might have to fill out a volunteer form.

When you go, find the first person you see, crouch down so you're looking them in the eye and not towering over them, and say "You don't know me but..." You will be surprised at the conversations you will have. Remember to step into their reality. If they are busy picking threads off their clothes (as one resident was when I visited Lakeview; I couldn't see the thread of course but it was very real to her as she had been a seamstress at one time) then join in and help out. Just have fun. If the person can't or doesn't talk, then holding hands will do. Give hugs liberally. Stick to the common areas; don't raise the suspicions of staff members by wandering into a resident's private quarters.

Last Sunday I went with our synagogue's youth group and their parents to visit a memory care unit and a long term care facility. The kids didn't know the residents and the residents didn't know the kids. They all got along famously. One young girl connected so well with one of the residents with dementia, that the resident was in tears she was so happy. The visit to the memory care unit had such an impact on the adults that two families asked if they could go back by themselves sometime. They could see the positive effect they were having on the residents. One parent who visited the long term care facility wondered if she could get a job there.

The time of the year when you visit is irrelevant. However, it being the holiday time and all (Hanukkah, Christmas, Kwanza), people tend to be on the lookout for good things they could do to help others. So go and visit now while you're in the mood. Go on Christmas day. Go on New Years. There are bound to be people who don't have families with whom to celebrate the holiday, and they are just as aware that others are celebrating and they aren't as you would be. Go and make someone's moment. I guarantee that you will come away happy.

P.S. If you are still looking to make a donation before year-end, make a donation to the Dementia Care Foundation, which among other things, provides scholarships for people with dementia to live at Lakeview Ranch.

Random Thoughts of the Season Part One: Gifts for People with Dementia

2009-12-11T10:17:00.000-08:00

Here's the first in a series of random thoughts inspired by the season, things that have been on my mind: gifts for people with dementia.

While I chose Judaism some years ago, my birth family is not Jewish, and every so often I go back to Toronto to spend Christmas with them. The last Christmas I spent with my mother, we did so at her nursing home, in a private room, where we were able to bring in and serve our own food, decorate and have a little family celebration. She thought she was at my sister's house, where she traditionally spent the holiday, so it was perfect. I showered her with gifts -- clearly dealing with my own issues and not hers. But here's what I have found works for gifts over the years, and not just for the holidays:

My bias here tends to be people with moderate to advanced dementia, but here's one for someone in the earlier stages: a computer. I think the HP or Sony (or Apple, again, my bias), touchscreen computer is great as it has a humongous screen (think large text) that can be activated by touching. Why a computer? Cognitive skill-building, that's why, and keeping in touch with friends and family far and near (socializing). It's also a good way for a person with dementia to interact with their child or grandchild as the young one can pass along their computer skills.

A Wii. The bowling game will keep two people busy for an hour easily, and is a great common meeting ground for people with dementia and their children or grandchildren.

Favourite foods are always a welcome gift. Something sweet and easy to deal with based on what sort of food your loved one is able to eat. For my mother, it was chocolate or cookies, and chocolate cookies were a real hit. Think about your loved one's favourite food, and if possible, make it sweet (or salty if they love salt and crunch). The point is to encourage them to eat by treating them to their favourite snacks, and hey, if they are elderly with dementia, they made it this far so don't be too concerned about the sweet treats.

A calendar, clock, or a clock with a calendar on it.

A bulletin board on which to post favourite photos, notes, letters, a calendar.

Clothing that is easy to take on and off. Sweat pants with elastic or draw-string waists. Tops that don't need buttons to do up. Cardigans for chilly days. Slippers.

A gift basket. It can be made up of food, personal items, games... it's just fun for anyone to poke through the contents of a basket and find all the surprises.

Jewelry -- not so much. This can be stolen or misplaced if your loved one is in a home. But, if you have a mom at home who loves pretty things, how about a necklace with a chain long enough that it can be slipped over their heads.

Cognitive activities: A Life Scenes 1 book (obviously!). But seriously, it's a reading activity for any caregiver, family or otherwise, to do with a person with moderate to advanced dementia. It's a gift that keeps on giving every time you use it. Also, consider puzzles with large pieces, a scrapbook of family photos with room to write underneath (throughout the year, interview your loved one about the photos and "write" a book together). Flash cards, games, anything that requires one-on-one interaction between you and your loved one. Gosh, here's a thought: how about a felt board, one of those designed to tell a story? You could make up a story together using the felt board and pieces. Try an educational store for that one.

Personal care items are always needed, especially if they are in a home that does not necessarily supply quality soap, toothpaste, body lotion etc.

One thing you need to keep in mind is that if your loved one forgets (almost instantly) who gave them the present or why, you just need to deal with it. Your enjoyment and thanks will almost certainly be the child-like look of pleasure on their faces when they open the gift. REmember to stay in the present. Don't press them the next day to remember what gift you gave them, You will be setting yourself up for frustration and disappointment. Opening gifts is fun for anyone and everyone, and you will be giving the gift of happiness and love that may only last a minute, but for your person with dementia, that minute is everything.

And don't forget a gift for the caregivers in your lives. How about a coupon for a couple of hours off once a month, when you will come in and take over the caregiving duties? Spa gift certificate? A restaurant gift certificate? A round of golf? Just allow the caregiver to take the time to do something they enjoy doing, guilt and worry free.

What I Would Do Differently for My Mom

2009-11-30T16:08:00.000-08:00

I was speaking with my sister on the weekend. She lives in Toronto and I am in Phoenix. We were reminiscing about our mother, who had vascular dementia and passed away in June of 2008, and comparing the dreams we each had about her. I said that I didn't dream about her much, but that recently I had dreamed about our mother being upright, able to walk, vital and alive, talking and joking, but still somehow I knew that she had dementia. And then sometime later in the dream I remember thinking "I will NEVER let her go back there... NEVER!" and I knew that I meant that I would never let her go back to the dementia care facility where she spent her last years.

My sister said, and rightly so, that our mother had lived in a pretty good place and that we did the best we could at the time, knowing what we knew. She's right. We had to act quickly. My sister and my stepfather had a week to find a place after the hospital said that there was no point to extending rehab because our mother, who had had a stroke, wasn't progressing (she couldn't remember that she couldn't walk, let alone that she was in rehab). The place we chose was brand new, and on paper, stated goals that to this day I support. They would involve family and community in the home. There would be visits from local children, who would be integrally involved in the facility. There would be lots of quality activity. They even talked about opportunities for the residents to "give back." Unfortunately not much of it came to fruition, although in the end we all agreed that she was surrounded by people who, for the most part, cared about her (except, perhaps, for the one who stole her ring). And my sister was vigilant against the behaviour-altering medications that the doctor kept sneaking into her care regime.

For awhile, on the phone, my sister and I lamented that our mother could not have lived at home. My sister would have felt better if she had been able to live at home in familiar surroundings, but it had been impossible. Our mother needed to be lifted in and out of bed, to the bathroom, into her chair. She needed care 24/7 and our stepfather was not able to provide this level of care, nor did they have space in their home for someone (or possibly two someones) to live in, and ultimately they might not have been able to afford this level of care for... how many years? I pointed out however, that people with dementia need lots of socialization and she would have been [even more] bored and lonely had she lived at home. I know they would not have had many visitors or gone many places.

And then my sister asked me: Well, what would you do differently, knowing what you know now, after all the research you've done and the places you've visited and the people you've talked to?

Whew, that was a big question. I think my answer to her was something to the effect of "Errrrr, sounds like a good topic for a blog..."

Back when my mother first started showing symptoms of memory loss, or rather, when her symptoms started to get more serious and included forgetting names, repetitively asking questions, and reducing her extensive repertoire of recipes down to applesauce cake (in other words, way too late), I would have been more insistent that she seek a diagnosis. I think I would have flown up to Toronto and taken her myself. Yeah, I know; easier said than done. I still don't have the answer for that one.

My stepfather actually did pretty well, tricking her into thinking she was going to her doctor for a physical, and not one that included a memory test. However, I certainly would have given my mother's doctor a piece of my mind when he declared her memory to be A-OK because she passed the test with a perfect score. We all knew the problems she was having. But we trusted him. Or more truthfully, we were weary of the fight and couldn't deal with getting her to another doctor for a second opinion. If we had had some encouragement, if we were hooked into a community of people who were dealing with the same issues, we might have been able to work up the courage and the strength to have another go at a diagnosis. If we had, we might have found out that she was in fact suffering from the effects of strokes, and we may have been able to take the precautions to prevent the major stroke that finally took the rest of her memory and paralyzed her legs.

Which brings me to the next point. I would have reached out to people who could help. I never knew that there were groups of people on the Internet who were experiencing the same issues that we were. Through them, we could have helped my mother and improve in our role as care partners.

My stepfather did call the Alzheimer's Society once. He put it off for ages because he didn't think my mother had Alzheimer's. He recognized that she had memory issues, but because of the stigma attached to Alzheimer's, he was pretty sure she didn't have THAT and so was reluctant to call. I was not privy to the conversation that he had with the person who answered the phone at the Alzheimer's Society, but he reported back something to do with the fact that she hadn't been diagnosed and so there wasn't much that they could help him with.

This is not a "dis" against the Alzheimer's Society. I am fairly sure that they will help connect people to resources no matter what, diagnosis or no diagnosis. It could just be what he thought he heard and, as I said, he didn't think it was Alzheimer's anyhow, so whatever answer they gave him that sounded like "she doesn't need our services" was probably OK in his books. Now, in hindsight, I know that there is help out there, and I would have milked it for all it's worth. As the child of someone who had dementia I could have called them myself. In fact, I had their number and picked up the phone a couple of times, only to slowly put it back in the receiver. Why? I have no idea.

If I could do it differently, I would have tried harder to talk to my parents about planning their future before my mother's future was planned for her. Again, easier said than done, but I would have tried, and I would have read some books to learn how to broach the subject better, or I would have tapped into the Internet support group that I would have joined. The care facility that they had wanted to go to was, a continuing care facility, with independent living apartments, assisted living, skilled nursing and a memory care unit, all on the same campus. My parents were on the waiting list for independent living, and two years later, when my mother needed to be in a memory care unit, or at least a skilled nursing facility, they were no closer to the top of the waiting list. Waiting until they were in their early 80s to get on the list for ONE place was not great planning, but our family let it happen. They/we should have faced the reality in their mid-70s that eventually they would require some sort of care or in-home support and THEN researched possible future homes or made the decision to age in place and make sure they were in a home that would allow for 24-hour care if required.

For sure, if I could do it differently, I would know about the wonderful and sophisticated level of memory care that IS available in facilities such as Lakeview Ranch and Silverado. And I would have found the Canadian equivalent and done everything I could to get her into it. My mother was "promoted" to the locked dementia care unit at her long term care home because of her behaviour. She was not violent or angry, but called out many many times during the day and night for her husband as he was the only person she recognized and trusted. Because the staff didn't have time to constantly answer her calls for "help" or "John," and because her calling out was disturbing to other residents, she was moved to dementia care. This move contributed to her rapid decline, but we didn't know that better dementia care was available, or what even constituted better care. We didn't know what we were looking for or that we should be looking for it in the first place. Now I do.

Finally, here's what I would do differently, and what I grieve for the most. I would have made sure she was doing some sort of cognitive activity every day. At some point during her time in dementia care, I realized the potential that existed within her to do, to give, to be, no matter what the state of her memory or confusion. Living thousands of miles away, it was difficult to ensure that she was engaged in sustained quality activity. When I was able to visit and when I was able to spend an hour doing things with her that were in some way cognitively challenging, she came alive. The results were even better when I could do this activity each day for the few days that I was in town. It was seeing this life in her, this possibility, that motivated me to create my book, Life Scenes 1, a reading activity for people with moderate to advanced dementia. But basically, I did too little, too late.

What I grieve for is that, with what I know now, her life could have been so much richer and happier had I known what she was capable of. Instead I allowed the stigma of dementia to define my perception of her abilities. I would have done activities with her to exercise her brain. I would have read with her, cooked with her, written notecards to family and friends with her. I would have sang songs, tried a new musical instrument, done puzzles, gardened, played games, recited nursery rhymes, counted to 100... all the things she liked to do. I would have turned off the )(@*!)#*!@# TV, and, for that matter, the radio too. I would have found a way for her to start enjoying the hobbies that she used to love but gave up in a haze of confusion. And I would have "trained" my sister and stepfather so that through our separate times with her we were building a program that provided sustained cognitive activity for her.

And, I would have hugged her more and kissed her more, and made sure she had physical contact every day, because this love (as someone in a LinkedIn group that I belong to said regarding her husband) brings a person with dementia back to the present, or at least, makes them present with you. And you know, even with dementia, my mother was still my mother, and even if sometimes she couldn't quite figure out where I belonged in the family unit, she knew that she loved me and that I loved her, and these hugs and kisses are what I carry with me today.

Well, in any case, I can't do it differently. But my hope is that people can learn from what I didn't do and what I would do differently if I could.

Dementia Through the Eyes of Someone Who Has It

2009-11-24T09:22:00.001-08:00

It was really just a case of being in the right place at the right time.

Those of you who read last week's blog about Lakeview Ranch in Minneasota know that I spent an enjoyable afternoon sitting on the lawn during and after the pet therapy session with a group of lovely people who just happened to have dementia.

For a time I was sitting with a lady whom I'll call "Jen." Jen has what I would term moderate dementia. She is not as mobile or "present" as someone in the earlier stages, but we conversed about family and her farm and it could have been her farm in the 1950s or it could have been now, but you know, it really didn't matter.

Every so often Jen looked up and turned her head to gaze at the other residents seated around the lawn. The sun was shining, cars drifted silently down the distant highway, trees swayed in the breeze. And Jen said "It's like it's all a dream..."

You know I just feel so fortunate to be able to be present for these sound bites, kinda like the "WOO HOO" experience from a few weeks ago. They provide me with so much insight into the world in which a person with moderate to advanced dementia must operate. Is having dementia like being in a dream? Not for the person in the earlier stages of the disease. But for a person in the later stages? Perhaps it's worth considering as a way of understanding what it is like to have dementia in the later stages.

Have you ever had a dream that, when you wake up, you think it was real? I know I have, and it's very disconcerting. The colours, the people, the things I see, the places I go. I actually wake up missing people, even if I've never met them!

But while I'm having that dream, as real as it is, and as much as I am a participant in the dream, I'm on the outside. I'm really only an observer, even if one of the people I am observing is me. I have no control over the me in the dream. I can't control where I go, what I am doing, who is with me. I can't tell the Dream Me to move my hand or walk down a road. And the dream is all a little hazy, and events happen so quickly and many times, have no logical sequence. I can be in London one minute and then Toronto the next. My father can be in the dream even though he has been dead for over 20 years. I can be having a conversation with him. A friend whom I haven't talked to in years might play an active role, and we might be talking about something that just happened yesterday (in dream time). In fact, in a dream, time has no meaning or relevance. There is no rhyme or reason as to why the people who are in the dream are in it, and no cause for what is happening and no hint of what might happen. It's all a dream...

So I wonder if a person with moderate to advanced dementia passes back and forth between the present and something that can be best described as a dream state?

Bob DeMarco, author of the Alzheimer's Reading Room, posted a most excellent blog today, entitled "Alzheimer's Caregiver Lament -- This is Not the Person I Knew." This article is a must-read for those of you who are interested in what a person with Alzheimer's must be dealing with. In it Bob says that the person with Alzheimer's is the same person you always knew, but is now a person with a disease, and this disease is called Alzheimer's. He talks about the "cognitive dissonance" in the mind of a person with dementia and the effect that the dissonance has on the person's personality as they attempt to deal with the frustration and confusion it can cause.

A person with moderate to advanced dementia is a person who is struggling more and more to stay present, and in many cases, has lost the battle. Once we understand what it is like for the person with dementia to operate in the world and what lense they see the world through, we can start to make real progress in working with them to live their best life.

In writing this blog, I just had an "A HA" moment. I have been using the words "stay present" and "staying in the present" interchangably. But they are actually very different.

While it's important to a person with mild memory issues that we assist them with any means possible to operate IN the present, there is little value to helping a person with moderate to advanced dementia stay IN the present. We who have been care partners to someone with moderate to advanced dementia know the frustration caused for all involved when we take the path of constant correction (No Mom, Dad passed away last year!), and really, it's just a non-starter. There comes a point where one must ask one's self, "Is it more important to ME that my loved one stays in the present, or more important to him/her?"

However, there is immense value in helping a person with moderate to advanced dementia stay present. Staying present in the moment means that the person with moderate to advanced dementia is available for interaction with another person right here and right now. It means that only this moment matters, not what happened 10 years ago, and not what is going to happen in 15 minutes. Whether the person with dementia is in a dream that places them in the 1940s with people who no longer exist is irrelevant. To us, as care partners, it means setting aside who that person WAS and working with the person as they are, no matter what dream they might be in at the moment. It means acceptance.

I don't have the answer to the question of what one must do to help someone stay present. My own personal tact is to recognize that the person is the same person he or she always was (unless it's a person I've just met!) and to treat them with the love and respect due to them. I will "step into their reality" (who really cares what year it is) and thinking as their reality as something akin to a dreamstate helps me to understand what their reality might look like, at least part of the time.

I like activities that play up the person's skills, as skills are not time-based and playing upon those skills can add to a person's self-worth. I also beleive a person should never stop learning. I like activities that allow the person to contribute to the community, and that provide opportunities to interact with people rather than things (particularly one-on-one interaction), as interaction with a live being demands response, which helps us to stay present.

This of course means that activities must be active, and not passive. Examples of such activities are:

One-on-one reading (I had to say that!)
Pet therapy, but actively caring for the pet, not just petting it
Vegetable gardening, where the gardeners are involved in the harvest and the community reaps the reward of fresh produce
Helping to prepare a meal, cleaning house, arranging furniture...things you would do around a house
Singing or playing music as part of a group
Helping in a preschool (how about onsite preschools and intergenerational learning?)
Laughter yoga, the only exercise class I have seen that demands in-your-face interaction that actively engages participants and literally brings them alive
One-on-one sessions with flash cards, games and puzzles that also require interaction and participation.

Of course, participation in such activities depends on each person's abilities, likes, dislikes and how their cognitive dissonance might manifest itself. For example, a person with moderate dementia who doesn't like children and lets everyone know it, might not do well with preschoolers, but you get the picture.

If it's like a dream, at least let's make it a good one!

Pure Magic at Lakeview Ranch

2009-11-11T04:37:00.000-08:00

This time last week I was sitting with a group of people on the lawn outside a house in Darwin, Minnesota, enjoying the last throws of an unusually warm streak of weather. The late afternoon sun cast long shadows on the grass. Trees waved in the gentle breeze, and newly plowed fields waited expectantly for the coming snow. Conversation was muted as befit the gentle surroundings, with laughter and the bleating of baby goats occasionally breaking through. Laurence and Mel* talked about fishing while Cathy snapped photos. Bill debated how he could get back to Cokaeto, and George wanted to know what highways were around the town. Jen watched the group with a bemused expression and Joe slept on. If I closed my eyes, I could imagine that I was at a family gathering or a bbq with good friends. It was a lazy Monday afternoon on the ranch.

Except that this is no ordinary ranch. This is Lakeview Ranch, a magical place and home to 30 residents with dementia. I was there with the documentary photographer and author of Alive with Alzheimer's Cathy Greenblat and Laurence and Kathy Harmon, owners of GreatPlaces. The occasion was a pet therapy session, held on the lawn to take advantage of the warm weather. Mel, Bill, George, Joe and Jen have dementia, and yes, Bill was asking for the sixth time how he could get back to the town of Cokato, and George was worried about getting back to his farm and wanted to know the best route. But the staff expected these questions and worked to avert any stress that might be caused by non-answers.

Lakeview provides specialized dementia care for people who are at high risk for repeated hospitalizations due to challenging and often violent behaviours resulting from their dementia. Prior to relocating to Lakeview, most of the 30 Lakeview residents had been moved repeatedly from care facility to hospital to care facility, causing untold stress on the resident and anguish for the families. In addition, the residents had experienced restraints and behaviour-controlling medications. For these residents, a move to Lakeview means a move to a permanent loving home, where they can live a peaceful, active, and restraint-free existence with minimal use of psychotropic drugs. For families, it means seeing their loved ones treated as humans, and seeing their loved ones acting as humans as a result.

How does Lakeview do it? By showing respect and love, and taking care of emotional, spiritual and physical needs. I asked two of the staff members, both RNs, what they considered the philosophy of Lakeview, or the main operating principle. One answered that they do not want the families to worry about their loved ones, that their family members with dementia are loved and well cared for. The other nurse concurred and added the principle of respect for the person with dementia.

Lakeview staff know that most often there is a reason for a challenging behaviour in a resident, and that if you fix the cause, you fix the outcome. A great example of how Lakeview staff handle challenging behaviours such as agitation that presents itself at the same time each day, is the story of the resident and the cows. One resident would become agitated at approximately 3:30 a.m. each morning. In reviewing the man's life, work and habits, the staff discovered that he was a dairy farmer who milked his cows at that time each day for untold years. He continued to be concerned about his cows. Staff were able to assure him that the cows were being milked and not to worry -- problem solved. The fact that they are willing to repeat this action every day rather than turning to behaviour-modifying meds to control his agitation is what differentiates Lakeview from many other facilities.

Lakeview Ranch is the passion of Judy Berry. When Judy first started working towards establishing her vision of a better place for people with dementia, she had no experience other than the knowledge that there had to be a better way to care for people like her mother. Her mother had Alzheimer's disease and during the last seven years of her life was "bounced around" from one facility to the next due to her somewhat challenging behaviours before her death in 1996. According to Judy, her mother spent the last year of her life strapped in a chair and drugged to make her behaviour "compliant." Judy was determined that no other person with dementia have the same experience.

Judy spent those years with her mother in frustration, anger and heartbreak as she searched fruitlessly for help and appropriate loving care for her mother. She already had a vision of the type of care she would like to find for her mother, but was told by nursing home administrators that the care of her dreams was exactly that: a dream. It was not possible, it wouldn't work and it was too expensive. As a result, at age 55, Judy decided to use her life savings to start Lakeview Ranch.

The first facility opened in Darwin, Minnesota and Judy later built another facility a few miles away in Dassel. Between the two locations, Lakeview Ranch now has a total of 30 residents (15 in each) and 85 staff. Judy's staff to resident ratio is 1:3: that's 3 residents for each staff member, plus RN's and activity directors. The high staff to resident ratio -- in addition to ongoing specialized training, mentoring of support staff, and in house RN coverage -- allows Lakeview to provide the specialized care for which they are becoming famous.

Let me tell you what I saw as evidence of how the Lakeview model of care plays out. What does this model really mean to the residents?

First, each of the facilities looks like a house, albeit a house with two kitchens and two wings of bedrooms. There is a huge living room with couches and a TV (it's not turned on very often, but some of the residents like to watch Wheel of Fortune). In the corner of the living room is a stack of bright homemade quilts threatening to topple over. The equally large common room is bright and airy, with large windows and skylights allowing the natural light and sunshine to stream in. Judy felt that darkness contributed to depression in the elderly, and so wanted to ensure that the interior of her homes were as bright as they could be. Indeed, all of the bedrooms have large windows allowing in a lot of natural light.

Besides the brightness, I was struck by the fact that all rooms were carpeted, with the exception of the common room and kitchens, lending to the home-like (non-hospital) feel of the place. I was also struck by the sheer quantity of common space. The living room and common rooms were true gathering spaces for residents, staff, family and friends.

There are two twin beds per room, in the belief that people in the later stages of dementia find it disorienting to wake up alone. The staff make provisions for people who object to sharing a room at first, such as putting up a moveable screen between the beds. However, the sheer size of the rooms ensure that residents will not be tripping over each other in the middle of the night. Furnishings are simple and all beds are festooned with homemade quilts and/or favourite quilts and pillows from home. Large bulletin boards on the walls are used to display photos, homemade cards from grandchildren and reminder notes.

Bathrooms are shared, and each wing has a large bathroom with bathing/showering facilities. Each location has a state-of-the-art bathtub that lowers and raises for accessibility, has a door that drops down... well, it looked like a space ship. At Lakeview, residents can choose whether they would like a bath or a shower. As a side note, staff at one of the homes raised the money for one of the special tubs.

The kitchens are large, functional, and each contains a table and chairs so that residents can eat family-style rather than restaurant-style. Here in Minnesota, coffee is drunk with every meal and in between as well, and so, the coffee is always on!

When staff interact with the residents, they always look them in the eye even if that means getting down on the knees to do so. They don't "schlepp" people around like inanimate objects, sending them off to one activity or another or rolling them over to the dining room for meals. I also realized that staff always moved residents themselves rather than with the assistance of a mechanized lift. I remembered that the home in which my mother resided had a policy about lifting residents: if a resident required lifting and more than one person was needed for assistance in lifting, then a mechanized lift had to be used to lift the resident (note that this does not necessarily translate into a safer lifting experience for the resident!). My mother, because she could not support herself with her legs, was deemed a "two-person lift" and so was always hauled out of bed and into her wheelchair with a big lifting machine. She never had the benefit of someone's arms around her to lift her up, and she wasn't a large woman.

Lakeview staff also know when and how to intercede before an event can take place. For example "Jen" didn't like having "Bart" close to her at dinner. Before things could escalate, a staff member dropped down between Jen and Bart and brightly said to Jen, "See, I told you I'd sit next to you at dinner!" Problem solved.

Judy believes in appropriate, frequent and engaging activities and doesn't hesitate to take a chance on something new. While we were there, and at the insistence of Cathy Greenblat, some of the residents took part in what we think might be the very first "Laughter Yoga" session ever held with people with dementia. It was a total success and the subject of a future blog. In the summer, Judy takes residents out fishing in a boat on the lake outside of the Dassel home. They have been known to go ice fishing in the winter. Residents also help out with the animals in the barn at the Darwin home, a boon to residents who used to farm. In addition, Lakeview recently acquired a bus, which they use to take residents on frequent outings to parades, local events and DQ.

But what struck me most was the overwhelming sense of peace, tranquility and positive energy that flowed all around. There was none of the noise of people in distress that one hears in many dementia care facilities. Staff speak normally and respectfully to residents, without shouting or speaking in simplified words as if the resident can't hear or understand. The decor is best described as comfortable "shabby chic," with china stacked up in china cabinets, overstuffed couches inviting people to snuggle under homemade quilts, and magazines, books and newspapers strewn around, waiting for a reader. There is always a bustle going on somewhere, and residents are welcomed to get involved. The food is homecooked and rib-sticking. Family visits are encouraged at any time, and family involvement is taken seriously at Lakeview rather than given lip service. And when family do come, they can expect their loved one to be happy, alert (unless they're asleep or in the final stages of the disease) and not demonstrating the behaviours that families find so distressing to see in their parents.

I felt as if I was in someone's home, and I was tempted to flop down in a chair and put my feet up on the coffee table as if I was at my parent's house. I've never felt that way in a dementia care facility before.

Of course, specialized dementia care costs money. Lakeview's per day cost is higher than most facilities, but the resident (and the family) get SO much more for their money. And, Judy will never turn away a potential resident because of inability to pay.

The 2009 Alzheimer's Facts and Figures report that Medicaid payments for this population (elderly with dementia and significant behavior) are nine times higher than for elderly without dementia, and that healthcare costs for seniors with dementia are three times as high as for those without dementia. The Lakeview model focuses on pro-active disease management and prevention. St. Cloud State University research has shown this model has proven to reduce behavioral hospitalizations by 93.3% while reducing psychotropic medication use by 36.1% in this high risk population. This high success rate translates into less money for Judy. According to an excerpt from a recent article by Judy:

Our current healthcare system funders and case managers doing assessments for Medical Assistance clients do not recognize this added value approach or fund -- Pro-active Disease Management and Prevention as an effective way to enhance quality of care while significantly reducing healthcare costs. In fact, Lakeview Ranch endures repeated cuts to low income residents Medicaid payments simply because they manage to do a better job, and are successful in reducing the aggressive behavior of their residents. Significantly higher payments are available for residents with ongoing aggressive behavior. In a nutshell, under our current Healthcare Delivery System, the better care you provide, using appropriate higher staff ratios of specially trained staff, and the more pro-actively you manage disease and "prevent" other acute medical emergencies that require high cost hospitalizations, ER visits and unnecessary testing, THE LESS YOU GET PAID.

To try and shore up the gap between revenue (from private pay residents and Medicaid) and expenses, Judy started the Dementia Care Foundation. She relies heavily on donations to the fund to provide "scholarships" for residents who cannot afford the care at Lakeview. Once again, note that Judy will never turn away a resident who cannot pay. With the downturn in the economy this past year, donations are way down and Judy is uncertain as to how she will close the gap. However, Judy takes it a day at a time, keeping her eye on the goal of providing quality specialized dementia care, and trusts that things will work out.

Help make sure that more people and families with dementia can experience the magic of Lakeview Ranch and that that magic is never extinguished. Make a donation to the Dementia Care Foundation.

*Names have been changed to protect the privacy of Lakeview residents.

The Future of Dementia? Get Rid of the Stigma First

2009-10-27T15:05:00.000-07:00

I had the most extraordinary experience the other day...

I visited the Silverado Senior Living home in Scottsdale, AZ on Tuesday. With facilities in four states, Silverado provides assisted living communities for people requiring specialized memory care. If I told you that Silverado is the only memory care unit where I can recall hearing words such as "self-actualize," "purpose," "productive" and "success" in reference to seniors with dementia, I think you would begin to understand what makes Silverado different from many memory care facilities.

However, this is not a blog about Silverado. If you would like more information about Silverado facilities, I advise you to go to their web site, www.silveradosenior.com.

I was sitting with the administrator in his office. Silverado has an open door policy; all doors are open unless the open door presents a safety harzard (i.e. the door to the street!). The residents are free to wander in and out of rooms as they wish, including the offices of the staff.

Silverado is in the process of redecorating this particular facility. In the hallway outside the administrator's office, a painter was putting up butcher paper to protect the molding on the wall from paint splatters. Down the hall came CJ, a senior lady with dementia. She noticed that the painter was having some trouble taping the extraordinarily long piece of paper to the wall. He had tape on the first bit of paper, and the rest of the strip was peeling off the wall faster than he could secure it. CJ went over to the wall and held the paper to the wall until the painter could afix it with tape. The painter thanked her profusely for her assistance and she said (and I quote):

Well, why not? The Lord put me here to do something!

And she followed that up with a victory punch up into the air and cried "WOO HOO!"

From babyhood to death, it is our human nature to want to improve, to grow, to work, to contribute, to have purpose. Without this drive to improve, to increase our knowledge, humankind would still be eating raw meat in a cave. However, when someone is diagnosed with dementia, our belief is that the person's life with purpose is over, and we treat them as such.

Part of this tendency is due to our perception of dementia; due to the dementia, this person is acting differently, outside of the norm. We don't like to be outside of our comfort zone. To be outside of our norm is to be weird, to cease to be human. And when a person ceases to be human, they cease to need to develop.

We need to stretch that norm and expand our comfort zone.

In addition, the elderly who have dementia also deal with the stigma of being old. We consider the elderly person's life to be at its natural conclusion. Their potential to improve, to grow, to work, to contribute and to have purpose is limited. They are going to die soon. They aren't really worth our time; if we are going to invest our resources we are going to invest in someone who has potential. (Think of the opposite, a child. We consider a child's life to be FILLED with potential).

We need to think that a person has the potential to change the world even if they are 99 years old; even if a person has 5 more minutes to live, they have the potential to change the direction of someone's life.

Combine the two stigmas, and you have an elderly person with dementia who is outside of our pre-defined norm and has little to no potential. They are not worth our time.

This is what I want to change. I want us to see an 85-year-old person with dementia and see the potential in that person. We need to understand that even a person immobilized by dementia has the potential to change a life with merely a glance or a touch.

I firmly believe in the power of cognitive activity, physical exercise, one-on-one interaction and socialization, living with purpose and feeling needed as a way of slowing the progression of dementia. Once we see the potential, we will see real work being done with people with dementia rather than merely continuing to meet their basic needs of food, shelter and safety while ignoring their higher human needs of self-actualization.

It all starts with you. Help us get there. Expand your norm and see the potential in every human being.

WOO HOO!

Shifting Perceptions About People with Dementia

2009-10-20T14:12:00.000-07:00

If you are at all involved in the world of dementia, either as a person with dementia, a care partner, a professional in the field or just an interested party, I'd like to know what goes through your mind when you read the following paragraph:

The person with dementia remains the same, equally valued person throughout the course of their illness, regardless of the extent of the changes in their mental abilities and other functions.

Or this one?

We are all dependent to some extent on one another (a concept often referred to as ‘solidarity’) and people with dementia are fellow citizens. We therefore have a responsibility to support people with dementia, both within families and in society as a whole.

Or, finally, this one?

...we also have a growing awareness of the abilities and emotions which are retained long into dementia, despite serious cognitive losses. This increased understanding poses a strong challenge to past ideas of dementia as a "death that leaves the body behind" and raises important questions as to the way in which people with dementia are currently regarded and respected. Yet this increase in knowledge has not yet delivered treatments which have more than a temporary effect. This lack of a 'quick fix' solution challenges us to look more closely at how people can be supported to live well with dementia, how their experience of disability can be minimised, and the implications of this for both services and research.

OK, just one more:

There is ample evidence that, in many cases, people are presented with a diagnosis of dementia and simply told to come back in a year's time. It was argued forcefully in one of our fact-finding meetings with people in front-line dementia care that such a lack of information and support in the immediate aftermath of diagnosis is simply morally wrong. We agree.

While it's fun to catch people (particularly myself) doing things wrong, it's even more exciting to catch someone doing it RIGHT, and the organization that produced this report is definitely doing it right. These paragraphs are from the report entitled "Dementia: Ethical Issues," published on October 1, 2009 by the Nuffield Council on Bioethics.

The who?

The Nuffield Council on Bioethics is located in London, England. Its mandate is to identify, examine and report on the ethical questions raised by recent advances in biological and medical research. It is required, in its terms of reference, to investigate and report on the ethical aspects of new developments in medicine and biology. The Nuffield Council has developed an international reputation for thoughtful and critical reporting on ethical issues in cutting edge topics and in providing advice that helps shape public policy.

With this study, the goal of the Nuffield Council was to create an ethical framework for decision making that can be used by care partners and professionals to help them decide the right thing to do in certain situations. For example, a care partner might be faced with the following decision: "I'm afraid my wife may wander. Should I lock her in?" It's a terrible decision to make, but an ethical framework can help the person who must make the decision consider all aspects of the situation and the way in which the person with dementia can be best supported. It may also help them to consider other alternatives to their first solution.

In 2007, the Nuffield Council formed a Working Party with the "aim of highlighting ethical issues that arise because of dementia; to provide some analysis of those issues; and to offer some general guidance as to how to approach them." The Working Party first met in November 2007. From May through July 2008 they held a public consultation, which, with 200 responses, received a higher response rate than any of their other consultations. They realized that they had hit a nerve.

In addition, they met with professionals involved in dementia from around the UK and, interestingly enough, also met with 50 people who had no direct experience with dementia to gain their insights into ethical decision making around the disease. I am sure they gained great insight into the stigma surrounding dementia in general society. Representatives of the Working Party also visited an Alzheimer's Cafe to speak with people with dementia and their care partners.

The materials resulting from the public consultations, in addition to the full report, the executive summary, a one-page summary and a booklet are available from the following web page: http://www.nuffieldbioethics.org/go/ourwork/dementia/publication_530.html.

There are many many recommendations in the report, in addition to their suggested framework for ethical decision making. Recommendations such as the following made me jump up and down with joy:

We endorse the plans in England, Wales and Scotland to improve public awareness of dementia. However, information campaigns are only one part of the story. For dementia to be truly ‘normalised’, it needs to become an accepted, visible part of our society, in the same way that physical disability is increasingly recognised as ‘normal’. People with dementia need to feel comfortable carrying on with their usual activities, such as going to a club or out to lunch, participating in church activities, or taking part in voluntary work. “Service providers” such as shops, leisure facilities and restaurants have a legal duty under the Disability Discrimination Act to make “reasonable adjustments” to enable people with dementia to use their services.

I am a strong believer that people with dementia are capable of so much more than we think they are. The brain is a powerful organ, and we really have very little understanding of how it works, and even less understanding of how it works and how it can function when under the siege of such dementia-related diseases as Alzheimer's disease and vascular dementia.

When I first put together my book to help people with dementia enjoy reading again (www.eldercareread.com ), I did so in the belief that people with dementia want to read, are able to read and want to learn new skills. They just aren't reading or learning in the manner in which is normative in our society. People with dementia may stop reading simply because they can no longer process the information in the way in which we in general society present it. Because we think that they can no longer read what we give them, we don't even try reading with them.

If, as in the recommendation quoted above, dementia is treated as a disability that is perceived as normal, we can start trying to find workarounds to the disability. Much in the way that people in wheelchairs now have ramps to sidewalks, buttons to press to open doors, lower counters, access to buses and many other workarounds, we can start thinking about how to make life more accessible to people with dementia.

I know that with recent developments in technology, many people are already thinking along those lines. But I think that to truly set people with dementia free to live their lives openly, we will have to depend on people themselves, the frontline people who come into contact with people with dementia on a daily basis.

Let me give the following example that I heard from a care partner and her husband, who has moderate Alzheimer's. They made the decision early on to let everyone know about his dementia. They went so far as to have their story printed on the front page of the local news. They had no hesitation in letting friends and neighbours know that he was fine, he was healthy, he was just the way he had always been, with a few exceptions. For example, he might wander. End result? He decides to see what is on the other side of that funny looking board with the handle. He tests out the handle, finds that the board opens to a whole new world, and is inspired to explore, or, to look for his wife who appears to be missing. Maybe she walked out here? He wanders a bit, and the neighbours two streets over notice him, and, knowing that wandering is to be expected, go over to him and work with him a bit to turn him around and set him on his way home. Helped along the way by like-minded neighbours, he eventually finds his wife in a house that looks suspiciously familiar.

We are very very far off from this level of support and understanding in most communities. Not only must we must first work on the stigma (people's fear of the reaction from others prevents many from letting anyone know they have dementia or indeed, in even finding out themselves that they have dementia), but in addition, a huge amount of community redesign is required. However, reports such as the one just published by the Nuffield Council are a good start.

Cathy Greenblatt: Photographer Extraordinaire

2009-10-20T13:02:00.001-07:00

Please read the following article for inspiration on following your passion AND making a difference in the world. Cathy is an amazing woman and I am SO excited to be meeting her in person (and Laurence and Kathy Harmon: http://www.greatplacesinc.com/) in a couple of weeks when we visit Lakeview Ranch.

Retired Rutgers Professor Forges New Career as Documentary Photog

Follow-up to EOAD -- please send a letter supporting compassionate allowance for people with early onset Alzheimer's disease

2009-10-09T09:47:00.000-07:00

In support of Bob's wife, Bob and his family, and the many hundreds of thousands like them in the United States, please take a few minutes to click on the link below and send an email message.

Mission Moment: Younger-Onset Action

This email is being distributed to chapter executives, program staff, communications staff, policy/advocacy staff and policy chairs.

Dear Colleagues:

The Social Security Administration (SSA) is running an open comment period so the public can provide input on the addition of younger-onset Alzheimer’s (and related dementia) to the Compassionate Allowances list.

The Social Security Administration needs to hear the voices of our constituents.

Action: Ask your constituents to support our efforts to have younger-onset Alzheimer’s (and related dementias) added to the SSA Compassionate Allowances list.

Please share the following URL with your constituents (support groups, board members, volunteers, staff, etc): http://alz.kintera.org/compassionateallowance

Word of Caution: This action is live. When you use the form, an email will be sent to SSA. The URL allows constituents to send an email directly to the Compassionate Allowances staff at SSA.

SSA is aware that this action is being coordinated by the Alzheimer’s Association and they have committed to following up on individual cases that arise from this effort.

This action is featured in the September Federal Update and we have posted additional information about the action on Insite: http://insite.alz.org/news/09_Q3/092409ssacomment.asp.

National staff has been working directly with SSA on this issue for nearly 2 years and we are optimistic that this mass action will help push us further toward the addition of younger-onset Alzheimer’s (and related dementia) to the Compassionate Allowances list.

Our grassroots advocacy efforts typically focus on state or federal elected officials. This action is unprecedented and we need every chapter to participate.

Questions about this action? Contact Kelly.Stellrecht@alz.org.

Thank you in advance for participating in this Mission Moment.

Regards,

Robert Egge
Vice President, Public Policy & Advocacy

The benefits of exercise for seniors are proven when my dad has a fall

2009-10-02T12:13:00.000-07:00

Thank goodness for my stepfather. I'll never run out of material while he is still around...

My stepfather is 84 years old. He is in very good health but suffers from some back pain due to sciatica and other ailments. He also had a heart valve replaced last May (see earlier post!). Otherwise, he tries to stay as active and in as good spirits as he can.

For the past couple of years, he has attended weekly exercise classes at his local senior centre. He had to stop when his back pain was too severe, but started up again when the pain eased as he understood that building strength was one way to avert the pain. He stopped before he had his heart surgery and has not started again, as he is still feeling a little weak. However, he is lifting light weights and walks about a half mile every day to buy his paper. For someone in his eighties, I'd say he has worked hard to build optimal strength without overtaxing himself.

Two weeks ago, he stepped out of his elevator at his apartment building into thin air. Without getting into too much detail, the elevator door opened but the elevator itself had stopped two feet above the lobby floor! I kidded with him that he must have looked like Wiley Coyote, foiled again by the Roadrunner and stepping off a cliff into the abyss.

Of course he fell, and fell hard. But, no broken bones. No hip replacements on the horizon. He landed on his arms and hurt his back again, but other than that, he walked away.

Now how many of us 40-somethings could say the same if we had walked out of an elevator only to discover the floor was two feet below?

Truth is, all that exercise has paid off. He bounced. His bones and muscles were strong enough to withstand the fall. His balance was good enough to make him fell in the best manner to ensure the least harm. His arms broke his fall and his arms were strong.

Falls cause untold amounts of injury to the elderly (and not so elderly). Exercise is vital, for fall prevention, to ensure the least harm if a fall does happen, and to continue to participate in all of your activities as you age. The message of this story is that it is never too late to start. My stepfather was no athlete. He was moderately active, enjoying a weekly round of golf and one or two daily walks. When his back started to give him trouble, he enrolled in exercise classes. He was already in his early 80s. And now, he can bounce, and because of that, he's back home in his apartment after his fall, and not in the hospital.

Early Onset -- The 9th Priority?

2009-10-02T06:38:00.000-07:00

Two weeks ago I posted a commentary on the World Alzheimer Report, published by Alzheimer's Disease International. In the report, ADI listed eight priorities, seven of which dealt with promoting early diagnosis and improving quality of life for people with dementia. The eighth dealt with research into a cure in addition to medication and psychosocial treatments. I was pleased that more emphasis has been placed on dealing with the people who have dementia NOW and less on research into a cure.

I didn't get a whole lot of feedback.

And then, I got The Email.

The Email, entitled "A Ninth Priority for Alzheimer's" was from a gentleman who, because he prefers to remain anonymous, we will call "Bob" from a state in the US Northeast. Bob needs to remain anonymous because he is currently looking for a job. Bob was edged out of his last job, a promotion, when he disclosed to his boss that he could not travel because he could not leave his wife, who has early onset Alzheimer's disease. After Bob disclosed this piece of personal information, the parameters of his new job suddenly changed to require travel and ooops, Bob couldn't travel so he was let go. Bob fears that any potential employer, upon learning that he can't travel and the reason why, may also pass him over in favour of someone without the same constraints. So he doesn't want any companies googling him and finding out that his wife has early onset.

In The Email, Bob politely reamed me out for including the word "ElderCare" in my business name, my book name, my web site and my blog. In his exact words...

The title of your book to the focus and slant of the site content happens to push a hot button of mine and makes me screamingly angry when I see it. Well, the fact that I'm not getting enough sleep, that I'm under an immense amount of stress, that I've lost jobs because of my involvement with AD, and the fact that you and others are not helping a particular segment of the population might also have a little bit to do with my getting screamingly angry as easily and as often as I do.

Bob pointed out that Alzheimer's is not just an elderly person's disease and that 500,000 people in the US under the age of 65 (and some as young as 30) have Alzheimer's disease. However, due to the popular myth that Alzheimer's is an old person's disease, he and his wife do not have access to many programs that are only available to seniors over the age of 65. And, when he tells people that his wife has Alzheimer's, they don't believe him. They say "You're kidding! She's not old enough to have Alzheimer's!" The last thing Bob needs is for people not to believe him.

Bob admonished me for helping to perpetuate the myth.

Bob then proceeded to enlighten me as to what it's like for a family to deal with a mom who has Alzheimer's. In his own words:

But imagine the mother whose 8-year-old daughter won't bring her friends home after school because the way Mom acts embarrasses her. Imagine the husband who has to turn down that promotion that might have led to becoming a vice president because the new position requires travel. Imagine the 23 year old recent college graduate, who, although she is a wonderful, caring young woman who is very supportive of her mother, won't introduce her first really serious boyfriend to that mother because she can't handle the emotions involved.

Wow.

Bob does not want to take away from the millions of seniors who have Alzheimer's disease (5 million people in total suffer from Alzheimer's disease... so 500,000 means that approximately 10% have early onset). I pointed out to him that seniors who have dementia must put up with a stigma double whammy: the stigma of Alzheimer's AND the stigma of being old. And families do deal with similar emotions and challenges even when the person who has dementia is over 65. Friends fall away. Jobs are lost. Family members won't talk. Life savings are gone.

But, you, the reader of this blog...are you a busy mom or dad? Not any more? Remember back to when you were. You have a job. You have kids to drive all over hells half acre. Parent teacher conferences. Little League. Soccer practice. Dentist visits. Movie nights. Romantic dinners with your partner. The big business trip next week. Your new job. Your new house. Your vacation in paradise.

Now imagine yourself or your partner doing all that... with Alzheimer's.

So, Bob asked that a ninth priority be added to the list. People with early onset Alzheimer's.

Bob challenged me and other professionals to be more inclusive in our thinking. He asks that we do simple things such as be sensitive to wording and book titles. I'm changing my company name... seriously. I can't get rid of ElderCareRead as I have ISBN's under it and because I still need people to find me on the Internet, but ElderCareRead will appear in eeeeny weeeeeny letters on the back cover of my books from now on. And I am in the process of figuring out how to transition the other part of what I do over to a new more general name. I'm hoping that this simple change will help people such as Bob's wife feel less marginalized.

Bob also pointed out that the need for a cure for Alzheimer's disease is extremely important. If Alzheimer's is hereditary and his daughter has the gene for the disease, then she is more likely to develop early onset, as did her mother. He would like a cure before she ever goes to the doctor to find out whether or not she has the gene. I agree. Of course I would like to see a cure. I heard 0n the radio this morning that our children can easily expect to live to be 100 (100 will be the norm) with 115 being viewed as not unusual. If there is no cure for Alzheimer's, and right now the prevelance of dementia in people over the age of 85 is almost half... well, you do the math. We'd better find a cure before our children start to live to 100. However, right now, in our day, living to be over 100 is no longer the big news story that it used to be. We do not have a cure and we probably won't in the next 5 years. We have 5 million people with Alzheimer's in the USA right now, that number is growing, AND we are falling woefully short at meeting their needs. And lost in all that is the 500,000 who have early onset and their families.

In defense of the research budgets, Bob says "I read [a report] that says Americans spend more money on popcorn than the yearly US budget for Alzheimer's research." If that's true, then that is abysmal.

Bob recommends that people interested in learning more about early onset Alzheimer's disease and in finding out what they can do to support people with the disease and their care partners, visit The Sharon Antcliff Foundation web site . This is a foundation recently established by Kevin Antcliff in honour of his mother Sharon, and his father who was her care partner. I also suggest that people with early onset and their care partners take a look at DASNI, Dementia Advocacy and Support Network International.

So, in summary, here's what you can do:

Recognize that Alzheimer's is not only an elderly person's disease and that not all the issues are the same.
Advocate that services for people with dementia be available to people under age 65.
Raise money for foundations targeted specifically at early onset victims, such as the Sharon Antcliff Foundation, and Camp Takatoka, a summer camp for children of families dealing with Alzheimer's. The Alzheimer's Association estimates there are 250,000 kids aged 8 to 18 across the country who are in a care giving role for someone with the disease.
If you know a family who has a parent with early onset Alzheimer's, talk to them, see what you can do to help.
Generally speaking, watch your language and your attitude about Alzheimer's and other forms of dementia. Start breaking the stigma now so that children no longer have to be afraid of what their friends will say and so that people no longer lose jobs because they are a care giver to someone with Alzheimer's. Educate. Educate. Educate!
Help find Bob a job! He was a project manager for IT systems and has tons of experience. Email me if you can help at laura@eldercareread.com.

World Alzheimer Report

2009-09-21T09:06:00.000-07:00

I scanned the Executive Summary of the 2009 World Alzheimer Report early this morning, and here is my somewhat bleary-eyed first impression.

First off, the report is a top-10 must-read for even those who are marginally interested in or impacted by Alzheimer's and other related dementias. Dementia is an international disease that knows no borders, no skin colour, no religion, no race, and it must be recognized as a world-wide health priority. The direction for us to take on this disease must come from the top down, and right now, the top is Alzheimer's Disease International, the umbrella organization for international Alzheimer's Associations and Societies.

To save you searching the ADI web site for the Report (to no avail I might add, for some strange reason... it IS September 21 there, isn't it??), you can download both the executive summary and the full report from my web site's home page, www.eldercareread.com.

Second, I must highlight the photos, taken by an amazing lady, Cathy Greenblat (bio and portfolio, www.cathygreenblat.com), whom I am proud to call my LinkedIn friend. One of her photos graces the cover of the report as shown above. Cathy's photos add a human and international dimension to what could otherwise be just another dry research report. Cathy has traveled to the US, Japan, India, Mexico and the UK to photograph people with dementia in successful care situations (and some not so successful). She is currently marking World Alzheimer's Day in India with her photo exhibit Alive with Alzheimer's.

So here's what struck me about the report: the recommendations. Like any good executive summary that is bound for the UN and its related world government organizations and NGOs, it provides the recommendations on page 3 so that harried non-profit executives will have no excuse but to read them. To save you the trouble of downloading the report in order to read them yourself, the recommendations from the report are as follows:

The World Health Organization (WHO) should declare dementia a world health priority.
National governments should declare dementia a health priority and develop national strategies to provide services and support for people with dementia and their families.
Low and medium income countries should create dementia strategies based first on enhancing primary healthcare and other community services.
High income countries should develop national dementia action plans with designated resource allocations.
Develop services that reflect the progressive nature of dementia.
Distribute services with the core principle of maximising coverage and ensuring equity of access, to benefit people with dementia regardless of age, gender, wealth, disability, and rural or urban residence.
Create collaboration between governments, people with dementia, their carers and their Alzheimer associations, and other relevant Non-Governmental Organisations and professional healthcare bodies.
More research needs to be funded and conducted into the causes of Alzheimer’s disease and other dementias, pharmacological and psychosocial treatments, the prevalence and impact of dementia, and the prevention of dementia.

Richard Taylor, who himself has Alzheimer's disease and is somewhere in Scotland marking World Alzheimer's Day by giving a speech (surprise, surprise!) should be standing up and cheering. Richard has been advocating tirelessly for more attention to be paid to people who have the disease, rather than all resources being focused on funding research into a cure. In ADI's list of recommendations, the "fund more research" recommendation comes last, and I am sure it was a strategic placement. With 35.6 million people worldwide with dementia, research into a cure has to take a lower priority. What do we do with all the people who already have it?
These eight recommendations spend only one-eighth of their power on pushing for research into cause and cure, and a portion of that one-eighth has been spent pushing for research into psychosocial treatments, code word for "yes, people with dementia are human too. Perhaps locking them up and giving them drugs is NOT the best way for them to live with the disease."
Another one-eighth of the recommendations are dedicated to asking the World Health Organization to consider dementia an international health priority. The report goes so far as to say that dementia may be an epidemic. I don't think it can actually be called an epidemic because I think that diseases that are epidemics mean that you can catch the disease from someone else, which clearly is not the case here. But with a person being diagnosed with a form of dementia every 70 seconds, the disease is of epidemic proportions. When the agenda of the annual international economic forum held in Davos includes the worldwide economic impact of dementia and an aging population, I will consider this a success.
So, the way I read the report, the other 6/8's of the recommendations, or 3/4's, or a full 75% of the recommendations, call for a focus on the people who currently have the disease and their families. The recommendations call for national strategies to provide service and support for people with dementia and their families. They outline strategies for enhancing primary healthcare and community services, recommend developing services that reflect the progressive nature of the disease, call for equalizing access to services, to benefiting people with dementia regardless of age, gender, income, disability or residence. Lastly, it calls for collaboration between governments, people with dementia, caregivers, Alzheimer's Associations, NGOs and professional healthcare bodies... and I LOVE that people with dementia are on the list, included as full partners in finding solutions for their disease.
Richard, your voice has not gone unheeded. I hope you are celebrating with a fine shot of scotch somewhere in Scotland!

What Can We Learn from Ivy Bean and Hillside Manor?

2009-09-07T21:10:00.000-07:00

Thanks to Carol Marak of Carebuzz and her posting on Facebook about Ivy Bean, the 104-year-old Twitterer who has 28,456 followers.

Here's a picture of Ivy and her "Geek Squad" helper.

Ivy lives in Hillside Manor just outside of Bradford in England. I won't go into all the details of her life: you can read about those in the article on cnn.com: Active Twitter User Celebrates 104th Birthday.

After reading the article I was left with several impressions and probably just a few questions. How can I pretend to know Ivy after just one article? How can I guess at what sort of person she is, and wonder how she managed to live to 104? But I can surmise a few things. Ivy seems to be a real go-getter, and it doesn't occur to her that being 104 ought to prevent her from doing everything that she wants to. She seems to throw herself into activities at every opportunity. Whether it's winning the frisbee competition in the home's 75-and-over Olympics or becoming Hillside's very own computer guru, nothing seems to stop her.

But what if her care circumstances had been different? What if she didn't live in Hillside Manor?

Hillside Manor's lovely green welcome sign says it's a "Residential Home for Retired Ladies and Gentlemen." It has space for 19 residents and provides dementia care as well. From the photos on their web site, it seems to be a stately old manor house with beautiful gardens.

What seems to make Hillside Manor unique is its philosophy about activities for its residents, or, rather, how it encourages the residents to be proactive in coming up with activities based on their interests and then following through on those expressions of interest, with the attitude that age or ability are not barriers. I'll just quote the CNN article here in case you don't get to read the entire article.

Part of the reason Bean is so active online is because the care home makes activities for its residents a priority. One resident wanted to learn more about photography, so he now takes a course once a week at a local college. The home also helped another resident get a passport so he could visit his son in Spain. (Click here to read the entire article)

In addition, Hillside residents competed against college students to find out who would do better on a history test. Hillside won. There are computer users besides Ivy, and Ivy doesn't just use Twitter. She first got a Facebook account and quickly maxed out her 5000 friend limit. In fact, the residents are getting so good at this computer stuff that the manager finally signed on to Twitter herself just to keep up. Ivy's Twitter feed reads like I would imagine Ashton Kutcher's probably does (no, I don't follow him!). Interview with Canadian news... Being interviewed by CNN. Her daughter came in recently only to be told Ivy was talking on the phone with someone in Israel. So as you can see, Hillside Manor acts as a facilitator or an enabler, with the residents clearly in the driver's seat in terms of choosing what they want to do.

So, do the residents have to WANT to get involved? Does the criteria for acceptance into Hillside Manor specify that every resident must have a sense of purpose and be self-motivated? Or does Hillside Manor do such a good job of providing interesting activities that they turn even the most reluctant resident into Super Senior in no time flat? I am wondering how many nursing home managers or activity directors would say "Oh, well, this Hillside Manor place has such great activities because their residents are more physically active and interested and motivated and...they have more staff" rather than examine their own attitudes and the pervasive philosophies of their facilities.

I promise you that I will follow up with the manager of Hillside Manor to find out exactly how they go about encouraging participation in their activity program, but here's a guess. They listen to their residents. They respect their residents' opinions and desires. They promise to act on something and then follow through. I'm betting that no request is too silly or too weird and that no opinion goes ignored. I think that Hillside Manor has a natural respect for the elderly that one does not find in too many places, and that this respect is in the air that each and every staff member breathes, so much so that respect for the elderly has become a natural part of who each staff member is. And once the residents begin to believe that they are respected and that the staff listen to them and follow through on their promises, they gain confidence in their abilities. Hillside Manor has taken person-centred care to a new level. And I would hazard a guess that this basic respect for the humanity of people, young and old, has placed Hillside Manor firmly in the top percentile of cutting-edge long term care facilities in the world.

Anyhow, I just started following Ivy Bean on Twitter (IvyBean104). She reported this morning that the weather is very nice today. I can't wait to see what tomorrow brings.

What are you doing for World Alzheimer's Day?

2009-09-03T09:39:00.000-07:00

World Alzheimer's Day 2009 is Monday, September 21. Alzheimer's Disease Internationa l, the international umbrella organization that builds and strengthens the local Alzheimer's Association/Society chapters, has set "Diagnosing Dementia: See It Sooner" as the theme of this year's World Alzheimer's Day.

What are you going to do to mark Alzheimer's Day?

The message of early diagnosis is much needed. If you are like the vast majority of people, you would avoid knowing if you or a loved one has Alzheimer's disease or any one of the other related dementias, even if you or your loved one is experiencing memory issues. However, an early diagnosis means more time to implement changes to your life that could enhance the quality and length of your productive life, enable participation in drug trials, allow time to do the things you always wanted to do, make changes to your life to accommodate the memory disability, and plan for the future.

In addition, there are many treatable medical issues that can cause memory problems, but if you don't go to a doctor to find out if that's the cause, then you can continue living under the illusion that you or your loved one has dementia.

So if it's all good news, why do people have to be TOLD to get a diagnosis for their memory issues?

Well, perhaps the theme for World Alzheimer's Day ought to be "Get to Know Alzheimer's: It's not as bad as it seems." Or, "Look someone with dementia in the eye: They're human too." Or, "Yes, it's Alzheimer's: Now get past it!" All these themes are aimed at breaking the stigma of dementia and realizing that productive and long lives can be led after diagnosis. Yes, there is a point in time where it ain't going to be pretty, but the years between diagnosis and that point in time can be plentiful, joyful and productive if that's what you choose to do.

Perhaps once society stops being so darned scared of the disease and yes, let's admit it, scared of the people who have the disease, then people who are experiencing memory issues will be more inclined to acknowledge these issues and go see their doctor.

So, with that in mind, how will YOU mark World Alzheimer's Day? Here are some suggestions:

Visit with residents at a memory care unit. Set this up in advance with a long term care facility. Better yet, get your community/women's/men's/youth group together and make a group visit. Get to know someone with Alzheimer's.
If you know a neighbour with dementia, reach out to them and their family. Have them over for dinner. Dementia is a disease, but it's not catching, and people with dementia love to, need to and want to socialize. In fact, when a family member is diagnosed with a form of dementia, their circle of "friends" typically drops them. Your invitation could be timely and welcome, and socialization is known to improve quality of life.
If you are a caregiver or a person with dementia, offer to speak at a support group or an "Alzheimer's 101" presentation to share your experiences with others. People dealing with this disease want to know that they aren't alone.
Talk to your doctor about his or her attitude towards diagnosing dementia. What would they do if a person was experiencing memory loss but still passed the memory test with flying colours? Dismiss them? Keep testing? Refer them?
Talk with your faith community or your Bunko group, or your cigar smoking group or your Little League parents or.... anyone, about how they feel about people with dementia. Use the opportunity to enlighten and educate and do a little bit towards breaking the stigma.
If you are part of a faith-based community, you have an amazing opportunity to arrange for a speaker from your local Alzheimer's Association to come in and spend an hour doing a presentation to educate your community about the disease. Go to www.alz.org and find your local chapter.
If someone you know is a caregiver, offer an afternoon respite. Spend some time getting to know the person with dementia while giving the caregiver an afternoon of free time.

Notice that these suggestions have nothing to do with raising money for research into drugs to cure Alzheimer's. While taking part in a Memory Walk or making a donation to fund research is worthy, there are over 5 million people in the USA with Alzheimer's, and when you include all the people who have some form of dementia that is not Alzheimer's, the figure is more like 12 million. There are people in your community dealing with the disease RIGHT NOW. Do something on World Alzheimer's Day to improve their lives and the lives of their caregivers. Do something that helps to break the stigma of dementia so that people will feel more positive about getting a diagnosis even if there is no cure.

Nursing Home Culture Change and Residents with Dementia

2009-09-01T17:45:00.000-07:00

The following is a repost of an excellent blog posting by Frances Shani Parker, Eldercare author and consultant. I couldn't agree with Frances more, except to say that it's not only nursing home culture that must change but also society in general.

With all my experience as a hospice volunteer in nursing homes, I still have to be consciously aware of how I respond to patients living with dementia. Today I saw an approaching friend pushing her husband in a wheelchair. I immediately called out to her with a greeting. Within three seconds, I realized that I had only greeted her and had not said her husband’s name. I then called out to him.

My friend’s husband has dementia, which refers to a group of conditions that gradually destroy brain cells and lead to mental decline. I’m pretty sure that I would not have forgotten to say his name if he did not have dementia. I would have greeted them together. This is an example of the kind of conscious paradigm shift many of us must make in our thinking if we are serious about improving our interactions with people who have dementia. Culture change in nursing homes must include their unique needs. It is so easy to forget that they are adults with mental challenges.

No one wants to feel ignored, and residents with dementia are often very sensitive. They need to be recognized as contributors to conversations and honored as decision makers. Activities should be available for them to practice organization and communication skills that help them feel more like the adults they are. Time must be taken to investigate and implement activities that will help them experience life as adults with limited abilities. Culture change in a person-directed environment includes meeting everyone’s needs.

Frances Shani Parker
"Hospice and Nursing Homes Blog"
http://hospiceandnursinghomes.blogspot.com/

The Benefits of Journaling for Caregivers and People with Dementia

2009-08-27T13:00:00.000-07:00

Everyone knows they ought to keep a journal. Oprah tells us to keep a gratitude journal. I tried that, and for a few days the gratitude journal made me realize that I had a lot to be grateful for, but then something ticked me off big time and that was the end of being grateful. I think my serious personal journaling days ended when I was 16 and my mother found my diary. In sweet revenge, after she died I discovered her secret notes stashed in her bedside drawer -- yes, I read them but, disappointingly, there was nothing juicy.

However, it's caregiving that got me back to writing in a more personal style. I needed to process what was happening to my mother and my feelings about dementia, and because I am a writer, I naturally started writing. I leaned more towards articles and now this blog, and quite frankly, I didn't know where to start, or HOW to get started, with a journal. When you are a caregiver, there is SO much to process. So many challenges, heartbreaks, humourous times...when faced with a blank page, where do you start? Blank pages can be very intimidating.

Thankfully, along comes B. Lynn Goodwin and her lovely book You Want Me to Do What? Journaling for Caregivers. At the core of her book are 200 prompts that get you writing in a manner that is no more taxing than filling in the blanks. For example, how would you end the sentence: "Today I feel..." I'll bet that you can't finish it in just one sentence and that you'll need all the space Lynn provides. Other examples of prompts include the following. See what appeals to you and try and write the rest of the sentence.

If I could change one thing in our routine...
The steady murmur of traffic on the interstate...
I was thrilled when...
I feel isolated when...
Although it was risky...
Because of you...
Joy bubbles up when...
No one knows I worry about...

Prompts are divided into sections such as "Thoughts About Me," "Thoughts About Caregiving," and "Thoughts About Reclaiming Oneself." In addition, Lynn provides space for the writer to come up with their own prompts, and provides a "how to" section to get the writer started.

In her Forward, Lynn talks about the benefits of journaling. According to research, journaling empowers the writer, who feels heard and acknowledged. It can open the writer to new perspectives. Journaling reduceds feelings of powerlessness, heals wounds and increases mental stability. Specifically for caregivers, journaling is a lifeline, it eases stress and is a record of the caregiver's experience with their loved one. While we are focused here on dementia, Lynn encourages all caregivers including those caring for an ill spouse, an ill child, a person with special needs or physical or mental disabilities, or anyone involved in a dependent relationship.

While this book is meant for caregivers, I would encourage people with dementia to get the book and find the prompts that work for them. In going through the prompts, I found many, if not most, prompts could be applicable to people who are experiencing the early stages of dementia and for whom writing could be a release and a way of processing the changes they are undergoing. For example, while the prompt "I felt stressed when..." might mean one thing to a caregiver, it can mean quite another for a person in the early stages of dementia, who might write "I felt stressed when I went to work, sat down at my desk, and could not think of the first thing I was supposed to do. What if I was supposed to be in a meeting? What if I needed to write an important email? I think I need a way of tracking my tasks as I can't rely on my mind anymore like I used to."

Not only can journaling ease the stress of a person with dementia, it's an excellent mental exercise to keep the mind active. Richard Taylor, who has had Alzheimer's for eight years, turned his journal-like essays on his experiences with dementia and his family caregivers into a book Alzheimer's from the Inside Out, and is now an international speaker and is working on his second book.

I recommend You Want Me to Do What? Journaling for Caregivers by B. Lynn Goodwin. It's an excellent book, and while I am no longer a caregiver, I know that many of the prompts apply to me and it just might get me over my phobia of keeping a diary!

The book is available at www.amazon.com. More information about the author and her journaling workshops can be found on her web site.

A Difficult Question

2009-08-24T18:32:00.000-07:00

Here is an article that I first published in 2008, in pre-blog days. I remembered it after some great conversations with two colleagues about care for people with dementia and the stigma around dementia and getting old, and decided to share it with you all. It brings back memories of my mother and the reasons behind why I got involved in the dementia field.

“When I get old, what do I become?”

If your preschooler asks this question, you might be tempted to submit her application to a top university immediately. But if this question comes from your 86-year-old mother, it can leave you speechless.

Eighteen months ago my mother Betty had a stroke that left her with markedly less memory and the inability to walk. Now she lives in a nursing home in the Toronto area. She is in the Alzheimer’s unit, the area beyond the double doors, locked to prevent wandering. Other residents, still present in the moment and mindful of themselves and their predicament, know that once they pass through those doors, they probably aren’t coming out again.

Actually, Betty does not have Alzheimer’s, the debilitating and terrifying brain disease that robs a person of their memories and families of their loved ones. She has Vascular Dementia, a condition with symptoms similar to Alzheimer’s, but which often results from a stroke. In the months spent in hospital rehab following her stroke, she demanded explanation after explanation. “Why can’t I walk out of this place with you?” Patiently my stepfather and sister explained what had happened. She was mystified by this new revelation. A stroke? Not walk? And she would ask again.

It was obvious from Betty’s 80^th birthday onwards that her short term memory was deteriorating. Even before then, she knew something was wrong, and she – a fiercely independent woman who valued her car above all else – voluntarily gave up her driver’s license and sold her car. Then she stopped reading, knitting and embroidery. Never one for crossword puzzles, she enjoyed the occasional game of cards or Scrabble, but even these activities became too confusing.

Over time, she had to be reminded of things that had only just happened. It became harder to get her to go on a trip, as she could not hold on to the knowledge of where she was going and why she was going there. It must be so scary for her to constantly be heading into the unknown.

After her hospital rehabilitation, it was quickly apparent that my stepfather, John, could not look after her at home as she needed full time assistance by two caretakers. She moved to the nursing home and was placed in the “normal” ward. She depended on John for everything; he was her walking memory who could make sense of even the most confusing situation. And so she called for him, constantly. He visited daily, staying by her side for hours, but she couldn’t remember that he had been there and called his name night and day until eventually he showed up again. It was the continual calling of his name, driven by confusion and fear, that eventually landed her on Alzheimer’s Row.

And so, here we are, in her sunny room on Alzheimer's Row, with the question hanging in the air: “When I get old, what do I become?”

Gazing at my mother, brittle and slightly curled up in her wheelchair like a fallen leaf, I am speechless. Her eyes wear an expression of perpetual surprise, and her mouth forms an “O” of wonderment. And I think, “How can someone who can’t remember how to use a fork ask such a deep question?” Even more surprising was that my mother, who had once crossed the Atlantic during World War II in a troop ship surrounded by destroyers and submarines, and yet who feared getting old more than anything else in the world, could never have vocalized such a question when she was younger.

She truly has me stumped. Searching for an answer, I reflect on our temptation to view elderly dementia patients as having reached the end of their usefulness to society, as having lost their humanity. What exactly DO we become when we get old? Perhaps this is what my mother feared.

A basic aspect of humanity is our ability to give to others. Does my mother have opportunities to give? I remember working with her recently to write a get-well note to John, laid up at home with a bad back. He was so grateful to receive her note and she was overjoyed at his written response. I think about the smiles she brings to the nurses’ faces when she sings a song or wears a funny hat. Many dementia patients in her ward can only babble, and yet when I accept their out-stretched hands, I carry on a conversation with them, however one-sided it might seem to passers-by. From these and other experiences, I conclude that humanity in my mother is alive and well, and that she is very useful to her family and friends in her residence. In fact humanity appeared to be more alive among her fellow inmates on Alzheimer’s Row than in many places in the world.

My mother for once is not forgetting her question, and I have to answer. So I say, when you are old, you are the same, only different. You may look and sound different, and perhaps you can’t remember much or do the things you used to do, but you still affect people in positive ways. I say that even though you are now old, you are still my mother, and although you are different, I like the things you do, I love your hugs and butterfly kisses, and you make me smile. You make the people around you happy. And no matter what, when you get old, you become a person who is loved even more.

She nods, graces me with a beautiful smile, and seems satisfied with the answer. I hope I can be satisfied with it when I am 86.

Be a Moment Maker

2009-08-18T19:35:00.000-07:00

Phil Bolsta, one of my favourite bloggers and a terrific read if you ever need a pick-me-up, recently wrote about David Wagner, hairstylist and founder of Juut SalonSpas, the original Aveda. Many years ago David discovered that he was a "Day Maker." You'll have to read on Phil's blog the story of how David became a Day Maker as it is a very inspirational story and makes you realize how many lives you touch just by being a nice person. In David's case, he literally saved a life by taking the time to provide his client with genuine care and wonderful service when she dropped in for a hairstyle -- he just showed concern for someone! After receiving a thank you note from this lady, who had planned on committing suicide that night until David made her day, he realized that he was a Day Maker, that everyone has the potential to make someone's day, and that being a Day Maker could be the most important thing you ever do. In fact, he went so far to change his business cards to say "Day Maker."

When working with people with moderate to advanced dementia, it's hard to be a Day Maker as many times the people you interact with might not remember 5 minutes later who you are or what you did, let alone at the end of the day. So, you have to be a Moment Maker, and it's equally as important. If a person with severe dementia can only remember moment-to-moment, then THIS moment, right now, is the most important moment in that person's life, and it's your job to make that person's moment the best it can be. You can do this with a smile, by listening, through a caring touch or a hug. You can read a book (I heard ElderCareRead is a great book to read with someone with advanced dementia :) ), sing a song, play a game, dance a dance, listen to music, do some gardening, just spend some one-on-one time.

When being a Moment Maker, remember to step into that person's reality. Trying to drag them into your reality is not important, and most definitely will not make their moment.

Be a Moment Maker tomorrow. See what happens.

Phil Bolsta's blog about David Wagner, including a video interview with David, can be found at http://bolstablog.wordpress.com/2009/08/17/wagner-video/

Inspirational "By US For US" Guides

2009-08-18T12:56:00.001-07:00

For quite some time now I've been meaning to pass along information about the "By Us For Us" Guides, a set of inspirational and informative booklets put together FOR people with dementia BY people with dementia. A group of talented and passionate people got together and created guides for people with dementia to pass along what they have learned about strategies for coping and living their lives to the fullest.

There are currently five booklets available for order for a cost of $1 each on the Murray Alzheimer's Research and Education Program (MAREP) Web site at http://www.marep.uwaterloo.ca/products/bufu.html. Detailed descriptions of each booklet are provided on this Web site.

The five booklets cover the following topics:

Memory Workout: An exercise guide for your mind based on activities that the authors found helped them to improve or maintain their memory and quality of life.

Managing Triggers: Triggers that people have experienced and strategies for gaining back control after becoming agitated.

Enhancing Communication: Different ways of communicating, hidden meanings, tips on communicating with loved ones and for expressing emotion.

Enhancing Wellness: Helpful tips for eating well, taking care of your body, being physically active, staying centered and connected with others, and living in peace.

Tips & Strategies: Ideas and suggestions for daily living with dementia, provided BY people living with dementia based on their own experiences.

Each booklet is full of helpful tips and strategies, all based on real life experiences of those with dementia and therefore tried and tested. The booklets are clearly laid out and easy to navigate.

Cognitive Retention Therapy and The Serper Method

2009-08-14T10:40:00.000-07:00

Someone pointed out to me the other day that my book, ElderCareRead Life Scenes 1 is an example of Cognitive Retention Therapy and was rather cutting edge.

I said: "Say what?"

The underlying theory behind therapies that deal with cognitive rehabilitation, as I understand it, is that the brain can build new pathways to work around the areas damaged by dementia. For example, the part of the brain that deals with long term memory can be retrained to take over some of the functions that short term memory would normally take care of, such as getting dressed.

When I created my book, I did so with the firm belief that people with even moderate to advanced dementia could learn (and WANT to learn) and enjoy new activities, and that even the simple action of getting the brain going and working produced immediate results in terms of awareness and being in the present moment. I saw it with my mother, who, because of her vascular dementia, "could not read anymore." She could not read large blocks of text in books, magazines or newspapers. She didn't even enjoy being read to after a certain point. However, change the design of the book to make it accessible to her and hey presto, she was reading. As I said in my last post, it could have been her vision but we blamed her inability to read on dementia, or it could have been the dementia that made anything more than a short paragraph of information confusing and difficult to process.

In any case, exercising the brain through reading, singing, exercising or doing the activities included in Cognitive Retention Therapy or The Sperber Method, can bring a person with dementia alive again. It's like movie The Awakening. I saw it happen with my mother every time we read, or if we played some of the preschool rhyming and action games together that she used to play with me, or we played a board game, and I knew that the more someone worked with her, the better she would be. However, I was a long distance caregiver and the staff in the home had little time to spend in such intensive one-on-one activities, and so the sustained activity that I believe could have created improvement in my mother's cognitive abilities, never happened.

Cognitive Retention Therapy and The Ashby Method are trademarked therapies based on the work of the late Dr. Mira Ashby MD who received the Order of Canada for her work with the brain injured. The main goal is to improve the quality of life for the participant and their family by resisting the symptoms of the disease. The therapy, which should be started as soon after diagnosis as possible to maximize its benefits, retrains the brain, builds memory bridges and promotes continued growth of neurons. The therapy has been shown to improve cognitive ability and ability to function with day-to-day activities. The web site is http://www.crt-intl.com/

The Sperber Method was developed by Dr. Lynn Sperber and was based on her own experience of rehabilitation after a ruptured brain aneurysm. She lost her ability to speak, read, write, and think clearly. Doctors recommended that her family place her in a long term care facility. Instead, with the help of friends and family, she embarked on a six-year program of rehabilitation at the hospital and at home. She created the Sperber Method based on techniques she used in her own rehabilitation. Four years after the anuerysm, she completed her doctorate and her dissertation. She started Brain Enhancement Services in 1999. The method is used with dementia patients to improve cognitive and social skills, and memory. For more information, see their web site at http://www.serpermethod.com/drupal/.

Earlier this month, the Alzheimer's Society of the UK commented on research in the USA that suggested that people in the early stages of dementia who engaged in simple activities to stimulate the brain could slow the progression of the symptoms. The comment bears repeating here, but the web site is http://www.alzheimers.org.uk/site/scripts/press_article.php?articleID=385

This American research is part of a long term study following a group of older people in New York. It suggests that people who will develop dementia may be able to delay memory loss by daily activities that stimulate the brain such as reading, writing and card games. Many previous studies have reported that higher education early in life is associated with delay in memory loss in people who are developing dementia.

'Interestingly this research has found that memory loss in people who are in the very early stages of the condition may be delayed by ordinary activities that engage the brain whether they were well educated in early life or not.

This research suggests that exercising your brain as well as your body may play a role in the fight against dementia. With one million people [in the UK] set to develop dementia in the next ten years, we must invest more in research to defeat this devastating condition.'

Dr Susanne Sorensen
Head of Research
Alzheimer's Society

I don't think people necessarily need to engage in such a comprehensive program as the Ashby Method. Doing puzzles, reading, card games, board games, and more importantly, socializing (so, that means not doing the activities alone or even with the same person all the time -- give the caregiver a break!), can slow progression. Use it or lose it, as the saying goes. However, engaging in a comprehensive program will ensure that the exercise takes place on a regular basis, and, much like having a personal trainer at a fitness centre, it means that the person with dementia will be challenged to do and be their best.

Oh, and both of these therapies suggest that behaviour improves with cognitive therapy. Gee, I wonder if they help to stave off boredom too... Why is it when people get dementia, we as a society think we ought to write them off as not able to do anything, including feeling bored as all get out? OK, stop me before I start another rant!

Looking Beyond Dementia

2009-08-11T14:02:00.000-07:00

There was an excellent article at www.boston.com yesterday about how Alzheimer's disease (and other forms of dementia, presumably) can hide the symptoms of other issues the person with dementia might be experiencing. To put it more simply, if there is something wrong, blame it on "the mad cow disease," to paraphrase Denny Crane.

The focus of this article is eyesight. (OK, you're just going to have to pardon all the puns I'm coming up with, without even meaning to!) Researchers have found that people with Alzheimer's might just have some vision problems, and that if you either (a) fix the vision problem or (b) provide them with visual assistance, then the symptoms go away and their condition and ability to perform activities of daily living increases vastly!

In the article, they used a few examples. A person with dementia constantly bangs into a table when walking past it. Blame it on the dementia; they keep forgetting it's there. Look through the lens of eyesight however, and the table -- made out of dark wood -- might be in a dark corner, or sitting on a dark carpet. Place the table in a bright place where it contrasts against its background, and hey presto! The person with dementia no longer walks into it. Another example is eating. A person with Alzheimer's starts taking a long time to eat. If you blame it on the Alzheimer's then you could say, "Well, it's to be expected. They're forgetting to eat." Look at it as an eyesight issue, and you place the food on a plate that is a highly contrasting colour, and the person starts eating again. It was that they couldn't see their food.

I hear this all the time with my book. People who have dementia and also vision problems due to dementia are reading ElderCareRead. It was simply my gut feeling that told me to limit the amount of text on each page to a short paragraph and to print the text in a large font. It was also my gut that said to print a few words in a REALLY BIG FONT so that people could focus in on just a few words. And it was my gut that said the photos had to be large and bright and printed on a bright white glossy paper. Turns out I was right. One thing I did wrong was to print the really big fonts in a better contrasting colour, and I will fix that for future editions.

When people with dementia stop reading, we assume it's because of the dementia. Perhaps it's the eyesight going. The person with dementia can't communicate that they can't see, and THAT part is due to the dementia. In addition, researchers think that the eyesight loss might be due to Alzheimer's, but that when the vision is corrected or assisted, symptoms that we typically blame on Alzheimer's, disappear and the person's ability to operate normally increases.

What all this tells us is that we must STOP blaming all the symptoms of dementia on dementia. It's just an easy way out. Rather, we must concentrate on finding ways to ENABLE the people who have the disease to operate in society.

The boston.com article can be found at http://tiny.cc/qB2IJ

A Miracle on the Ranch

2009-08-05T14:37:00.001-07:00

Dear Readers:

I am pleased today to point you in the direction of the GreatPlaces blog, written by Laurence and Kathleen Harmon.

In this blog Laurence talks about Judy Berry and the ranch that she turned into a magical place for people with dementia. There are several things that are unique about Lakeview Ranch, located in Darwin, Minnesota. First and foremost, no drugs are used to suppress behaviour issues. Second, Lakeview Ranch takes in people with dementia who have been given the boot from other facilities due to their extreme behaviour problems. Third, the way in which Lakeview Ranch staff get to the root of the behaviour issues is compassionate and more importantly, works to solve behaviour problems by using basic respect for the people as they are and as they were.

In addition to providing an indepth overview of the ranch and its program, Lawrence gives a biting commentary on drugs in memory care units and why they are so prevalent. Ouch.

Click here to read Alzheimer's/Dementia Care Evolves in Darwin, Minnesota.

Please read and comment at the bottom of the blog.

Follow up to "I live alone"

2009-07-30T19:43:00.000-07:00

Hot on the heels of my comments on the letter to Dear Abby from a lady who lives alone and is concerned about whether or not anyone will let her know if she develops dementia, we have the news article about the 67-year-old woman in Australia who was stuck between her toilet and the bathroom door for an entire week before anyone noticed she was missing. Her neighbour heard her cries for help and notified police. But it took a WEEK?

Yes, this lady's fears are well-founded about whether or not other people will let her know if she seems to be developing symptoms of dementia. I received a lot of feedback about my blog earlier this week, mostly via LinkedIn and direct emails and I thought it was worth pulling it together into one place as it's all good stuff that would be useful to others.

Some of the feedback that I received talked about our society and how sad it is that people must fear that they will live alone, develop disease alone, get stuck behind toilets alone and presumably, die alone. Why can't we care about each other more? Is this the result of the individualized and cocooned society that we have created?

Marcia Williams, CSA, owner of Visiting Angels of Metro Detroit, commented that the woman living alone ought to obtain the services of a Geriatric Care Manager, who would work with her to create a care plan that includes living arrangements. As Marcia said:

The GCM can direct her to the resources she needs to engage i.e, elder care attorneys, doctors, etc., and ensure that over the years her plans evolve to fit her current needs i.e. facilities, home care whatever her plans entailed. This way she could be in control and know that there is someone watching out for her.

She made the point that Geriatric Care Managers are usually brought in at a crisis point to assist the family to find necessary resources. However, as Marcia says, "Imagine bringing one in when the senior can speak for herself and actively work with the GCM to put things in place for her future."

Geriatric Care Managers can be found by contacting the National Association of Professional Geriatric Care Managers, www.caremanager.org.

In response to the concept of an Aging Will, Marcia also told me about Family Love Letter, which outlines financial, legal and medical details, along with family history, funeral arrangements and the like. A sample can be downloaded at http://www.cornerstoneplanning.com/uploads/pdf/09Web%20Love%20Letter%20to%20My%20Family.pdf.

I like this Family Love Letter and may indeed print off a copy to give to my stepfather to fill out, although he has already put together a binder with much of the financial and legal details of his life. The Aging Will takes things one step further and outlines the person's wishes pertaining to living arrangements, care options, how care is to be paid for, what happens to the dog... things like that, all things that when push comes to shove, he or she might put up a fight about or the family might be uncomfortable bringing up for discussion and decision. I haven't created an Aging Will yet, so if you have any ideas about what ought to be in it, let me know!

Sonia Garcia-Francia, CEO of Guardian Angels Homes, suggests that for budget-minded seniors, the first stop regarding concerns about dementia should be your local chapter of the Alzheimer's Association (or Alzheimer's Society if you are in Canada). They can provide you with a list of resources. You can contact the Alzheimer's Association national 24-hour help line at 1.800.272.3900 or look at their web site at www.alz.org.

Mona Johnson, blogger at The Tangled Neuron, asks if people who have dementia know when they are developing symptoms of dementia. Speaking personally, I'd have to say that my mother knew when she was developing symptoms but refused to admit it. I guess it takes someone brave enough (and none of our family was brave enough to confront her directly; we just put pressure on our poor stepfather to "do something!") to tell the person that they are developing memory loss issues. Perhaps each of us has a good friend or close family member with whom we can make a pact: When I start to "lose it," will you be brave enough to confront me, thus ensuring that I see a doctor for a diagnosis and have the best chance starting early to slow the progression?

In fact, the Aging Will should include a line that says: If I develop memory loss issues, I promise to see a doctor as soon as possible to discuss a diagnosis, no matter what kind of fuss I kick up at that time.

Frances Shani-Parker, Eldercare Author and Consultant makes the point that people should establish a memory baseline. She suggests:

I would also advise her to get a comprehensive geriatric evaluation that can identify any medical and functional problems where she might be at risk. Her primary care doctor or a geriatric specialist can do this assessment. Results would establish baselines for a management plan that she can implement as she ages. Having this ongoing information and support will help her feel more empowered regarding her health now and in the future.

Very very good advice.

And finally, it just comes down to taking care of our neighbours. "Stan" writes that his neighbour started to develop signs of dementia, and as her kids did not visit often it was up to him to call her kids and let them know. Who knows how long it would have taken for them to find out if he had not alerted them. Frontline workers such as the police had to get involved when she got lost while walking; perhaps we need to ensure that our seniors over a certain age are registered with the local police along with alternative family or friend contact information.

My hope is that we can now take this good advice to heart for ourselves and our loved ones.

I live alone. If I start to lose my memory, will anyone know?

2009-07-27T12:25:00.000-07:00

There was a very poignant letter to Dear Abby in this morning's paper. It was from "Growing Older in San Diego," who is a single woman in her 60s who lives alone. One of her greatest fears is developing dementia. As she lives alone, she fears that there would be no one around to notice changes in her behaviour and activities that might indicate memory loss. She listed all the things she is still able to do (not sure why, as she does not indicate that she is having issues now, although perhaps she thinks she is and hence her concern). However, she continues, how would she recognize the fact that she needed to move to assisted living so she could make arrangements before requiring someone else to make them for her?

Dear Abby replies that many single women are surrounded by friends who they interact with on a regular basis, and surely one or more of her friends would recognize signs of a memory disability if she herself did not.

My comment is that many seniors living on their own are not surrounded by friends with whom they interact on a regular basis and so we must depend upon the strangers or acquaintances with whom we interact on a regular basis. One of the projects of our local Alzheimer's Association is to educate so-called "front line workers" to recognize the 10 signs of Alzheimer's disease and tell the appropriate person, who can then determine what action to take and whom to contact. Front line workers include police officers, bank tellers, cashiers, bus drivers, receptionists and the like; people with whom we might interact on a weekly basis or whom might be called upon in an emergency. If you, the reader, are one of these front line workers, or you interact with seniors on a regular basis, please familiarize yourself with the 10 signs of Alzheimer's disease and help a person get the assistance they might need.

Dear Abby continues on to say that the lady should discuss her concerns with her doctor and request to be evaluated for signs of dementia during her annual physical. She is absolutely correct in recommending this step, and one hopes that the lady in question has a doctor who will listen and who is knowledgeable about the various dementias, how to screen for memory issues, and the many treatable conditions that can also cause memory loss.

My hope is that once the stigma of Alzheimer's disease and other dementias fades, memory screening will automatically be a part of the annual physical after age 50, much as women go for annual mammograms. We need to establish our own personal baseline memory standard against which future memory tests are measured in order to know if we are developing memory issues. Advances towards this end are being made in the UK, where the government has taken steps to recognize the current and looming health crisis facing the country due to the burgeoning numbers of people developing dementia.

I would add to Dear Abby's answer, that the lady should embark upon a program of healthy eating and exercise in order to place her body in the healthiest position possible to combat memory loss. She should also find ways to socialize, either through a faith-based community or a senior centre, or by taking classes at community centres or schools, or join a book group or find some other way to socialize. Not only is socializing important to brain health and to slowing the progression of dementia's symptoms, but in that way the lady can surround herself with people who will be her support network should she show signs of memory loss.

I would also add that the lady ought to be thinking NOW about Assisted Living options, not to mention her financial health, her will and a host of other things, while her mind is clear. She should be discussing these issues with her family, if she has one, or with a close friend or a lawyer, or with a reputable firm that advises seniors on such matters. She can wait to implement her "Aging Will" until such time as she is alerted to the fact that she is developing memory issues, but the planning for her future must be done now.

In fact, I think I'll write that to Dear Abby!

With thanks to Dear Abby, www.dearabby.com, July 27, 2009.

HEY! My book for people with moderate to severe Alzheimer's and other forms of dementia to read, talk about and enjoy is on Amazon.com! Search for ElderCareRead. It's only been on for a day, so it's not showing up in searches such as "alzheimer's" as of yet.

Alzheimer's Association Ad Campaign

2009-07-22T09:16:00.000-07:00

It's not every day that you are rocking along to your favourite radio station's morning show, and you hear "1 in 1500 teenage babysitters will call for assistance..." (or something to that effect... I wasn't really tuned in yet!) "... but 1 in 150 people will develop Alzheimer's disease." By this time the ad had my attention. It continued to say that you should get to know the ten signs of Alzheimer's and it mentioned the Alzheimer's Association.

I think it's terrific that ads to promote awareness of Alzheimer's disease have made it to my morning radio show, particularly as the station is directed at the 20-45 year-old age group, more or less. However, it left me wondering what else it could have said. Such as, what should I do if I realize that I know someone who is showing signs of the disease? I could not help but think that once again an opportunity has been missed to promote early diagnosis, or at least, to tell people that even if they don't think it's Alzheimer's disease but someone they know is showing signs of memory loss, they can STILL call the Alzheimer's Association for help!

To their benefit, if one were to take the initiative based on this ad to go to the Alzheimer's Association web site, the 10 signs are presented clearly and beautifully, and early detection of the disease is promoted heavily as part of a new education initiative. If you have not visited the Alzheimer's Association web site at www.alz.org recently, it's worth taking a look at their new education program.

Now early detection just needs to make it to prime time as well.

Living with Purpose Critical to a Long Life

2009-07-19T08:50:00.001-07:00

Part of living with the disease of dementia and slowing its progression, or part of ensuring a long life in general, is to have a purpose. Here's a story that gives more reinforcement to this idea.

The world's oldest man and WWI veteran, Henry Allingham, died this past weekend in England. His age? 113. Yet it's only in last 8 years that he found new purpose in life.

Born in 1896, Henry joined the RAF in 1915 after his mother died. As he had been working in a car factory, his job was to maintain the rickety early airplanes of the RAF. Remember that the Wright brothers had only just flown their first plane in 1903! Henry also flew as an observer on a biplane.

After the war, Henry worked at the Ford motor factory and raised two children. His wife Dorothy died in 1970. Unfortunately his daughter Jean died in 2001, and at this point, at age 105, Henry thought he wanted to die too. His life seemed without a larger purpose.

About this time he met Dennis Goodwin, a nursing home inspector who realized that war veterans from Henry's generation were not getting the care needed to address the trauma they experienced during the war. Goodwin started organizing trips for veterans to France, so that they could revisit the battlefields where they had fought and lost so many friends, and finally begin to come to terms with what had happened there.

Goodwin encouraged Henry to being sharing his experiences of the war. Henry, at age 105, started talking to reporters and school groups, and did an interview with the Associated Press last November, 2008. He told the Associated Press: "I want everyone to know, they died for us." Henry Allingham, in the last years of his life, provided a vital connection between the young and those who fought and died in the First World War, and found a new purpose in his life that made life worth living again.

Despite his allegation that it was "cigarettes, whisky and wild, wild women" that contributed to his long life, it was his newfound purpose in life that gave him the reason to live when most would have given up.

When we are in our 20's, 30's, 40's and 50's, it is life in general that gets us through life. It's the demands placed on us by family, jobs and community that give us purpose, even if we have not "found" our purpose. Our purpose finds us and sustains us. But once we retire, the kids grow up, our spouse dies or we divorce, then what? Then there is no one else to find our purpose for us except ourselves. I think that's why we tend to see a rapid decline after retirement in many people, and certainly after the elderly move to nursing homes, and especially after diagnosis with dementia. After moving to a nursing home, there isn't even feeding the cat or trying to stay indpendent in one's home to add purpose to life, and bingo can be a poor substitute for most people. And after diagnosis with dementia? Well, they know the end is coming and apparently it's not pretty, so why try?

We need to help people, especially those with dementia, find new purpose after retirement and after diagnosis. I think this could be the magic pill many are looking for.

With thanks to Danica Kirka, Associated Press. Article in the Arizona Republic, Sunday July 19, 2009.

Having the Talk: Part 3

2009-07-16T10:08:00.006-07:00

OK, this posting is a bit of a cheat, but a cheat that I am sure will be beneficial to many many families. Plus I'm a firm believer in not recreating the wheel when someone has produced a beautiful, useful wheel.

The topics about which to have "the Talk" when one has the talk with ones parents are too many to have in one conversation. So how do you approach it? How do you have multiple conversations when it's hard enough to have just one, to just get started?

David Solie, author of How To Say It to Seniors: Closing the Communication Gap with Our Elders, has created a map to guide families through aspects that a senior couple and their families ought to be considering for their future. Called the "When the Bottom Falls Out Mind Map," the map presents two "what if" scenarios, based upon what happens if "the bottom falls out." The bottom might represent illness or financial issues.You could probably make up your own "bottom falls out" scenarios to which the multiple considerations presented on the mind map could apply. David reports on his blog that simply giving a print of the map to senior parents who were reluctant to discuss their future was enough for one family to get started on this important journey.

You can find the map on David's blog at www.dsolie.com.

Love This! Strategies for Communicating with People with Dementia

2009-07-15T07:44:00.000-07:00

I was contacted by a member of the Alzheimer's and Related Dementia Society of India (Hyderabad Chapter) via LinkedIn to join their group on LinkedIn. I LOVE learning about where other countries are at regarding their struggle with dementia and how they view their members of society that have dementia.

This list of FOCUSED strategies for communicating with people with dementia was on their web site. I really like it, except possibly the bit about helping the person with dementia to get unstuck. I don't personally think that correcting the person when they use the incorrect word is productive, but that's just me.

I encourage you to visit their web site and see what they are doing!

Thanks Shashidhar!

FOCUSED Communication Strategies

F = Face

Face the person with Dementia directly

Call his or her name

Touch the person

Gain and maintain eye contact

O = Orient

Orient the person with Dementia to the topic by repeating key words several times

Repeat and rephrase sentences

Use nouns and specific names

C = Continue

Continue the same topic of conversation for as long as possible

Restate the topic throughout the conversation

Indicate to the person with Dementia that you are introducing a new topic

U = Unstuck

Help the person with Dementia become “unstuck” when he or she uses a word incorrectly by suggesting the intended word

Repeat the sentence the person said using the correct word

Ask, “do you mean….?”

S = Structured

Structure your questions so that the person with Dementia will be able to recognize and repeat a response

Provide two simple choices at a time

Use yes/no questions

E = Exchange

Keep up the normal exchange of ideas we use in everyday conversation

Keep conversations going with comments such as, “oh, how nice,” or “that’s great”

Do not ask “test” questions

Give the person with Dementia clues as to how to answer your questions

D = Direct

Keep sentences short, simple, and direct

Put the subject of the sentences first

Use and repeat nouns (names of persons or things) rather than pronouns (he, she, it their, etc)

Use hand signal, pictures, and facial expressions.

Ref: Ripich and Ziol (1998)

ElderCareRead books, for people with moderate to severe dementia to build reading and communication skills, is designed with many of these principles in mind. Click here for more information about and to purchase ElderCareRead Life Scenes 1.

Physicians talk about what encourages and discourages early diagnosis

2009-07-13T16:00:00.004-07:00

As you all know, I am a proponent of early diagnosis of dementia. No sweeping it under the carpet! While there is no cure for Alzheimer's (and some other forms of dementia), memory loss can be related to a treatable condition, and, if the memory loss is due to dementia of some sort, an early diagnosis leaves a much larger window of time available for treatment, managing the disease, planning for the future, and LIVING!

However, it's extremely difficult to get people who think they might have a memory issue to approach their physician, and it's also difficult to get the physicians to be proactive in encouraging a patient to undergo testing.

A terrific summary of what encourages physicians to suggest testing for memory issues to their patients was presented at the Alzheimer's Association 2009 International Conference on Alzheimer's Disease (ICAD), taking place in Vienna. Click here to read the article.

The presentation was an interim report of a larger study being done in Australia. In total, 100 physicians will be interviewed, but even the reports of the 25 that have already been interviewed are quite telling. Your reaction to some of the results might be much as mine was: "Well, it doesn't take a brain surgeon to figure THAT out!" -- but sections of the article read like a playbook for someone (the Alzheimer's Association???) on how they need to support physicians to ensure early diagnosis.

Read it and let me know what you think!!!

Four ways to communicate with a person with dementia

2009-07-10T08:52:00.000-07:00

Patricia Grace of Aging with Grace wrote a wonderfully comprehensive article on Examiner.com on four ways to communicate with people with Alzheimer's and other forms of dementia. She talks about reading as the first way, and highlights ElderCareRead books. Reading is an excellent way to communicate when you just can't find the words.

Patricia also talks about music, touch and speech. As Patricia says, the most important thing is not to talk to the person with dementia as if they are not there. People with dementia take in and process a lot more than one would think, and especially read body language, tone and general aura. Don't talk down and don't talk to them like little children. There is no need to dumb down your language. It's more about stepping into their reality rather than dumbing down your conversation in the hopes of dragging them into yours.

To read more about and also purchase ElderCareRead books, click here.

Why ElderCareRead Life Scenes 1 is not popular

2009-07-07T10:07:00.000-07:00

I'm creating a press release for my book, ElderCareRead Life Scenes 1, and in doing so, started to think of all the reasons the book is not flying off the shelves.

For those who don't know, ElderCareRead is a new concept in books for people with moderate to severe dementia. The book is designed with multiple "access points" (using a device called "universal design"), making the book accessible to as many readers with dementia as possible. It combines large colourful photos, large-font text to read out loud, and "trigger questions" to start discussion. The book can be read one-on-one by the person with dementia, with a caregiver who acts as facilitator, or can be read by the person with dementia by themselves. Some people hook into the pictures and don't read the text. Most people read the text, and all respond to the trigger questions.

Great idea, right? The book has been highly successful in testing with people with moderate to severe dementia. It has also brought enjoyment to people with failing eyesight and to those who have aphasia.

So why isn't it flying off the shelves?

Well, I don't have it on Amazon for one thing. Because I am self-published, my expenses are too high and I end up with a monetary loss on each book. But I know it's something I have to do sooner or later. My web site gets hits every day, and I'm getting a lot of exposure through social media and other people's blogs. And I'm advertising!

Why else? After all, I had a table at the National Association of Activity Professionals conference in April, and while I admit that the jewelry vendor across the way posed stiff competition, my book got lots of glances, lots of "Oh, let me take a look at this!", lots of "Is it free? Can I take one?" Many people took a promotional post card. But sales were way less than stellar.

Here is what I think is the primary reason the book is not selling: Many people in the position to determine in what activities people with dementia will engage, don't believe that people with moderate to severe dementia can read.

In a way, they are right. People in that stage of dementia, and even in earlier stages, have a problem deciphering large blocks of printed information. It's just too confusing, and they feel under pressure to finish the text and comprehend it quickly, as they used to be able to do. The first line of defense when confused is avoidance. It's easier just to not do it rather than to try and understand why they don't understand. So, they don't read. However, when presented with a small block of text (not dumbed down, just smaller and bigger), people with dementia can read. I've seen it. It works.

Each page in the ElderCareRead book has a short block of text printed in a large font. The text relates to the photo on the same page. Some words are printed extra-large and in a different colour. When working with a reader with dementia who doesn't know where to start, I've found that if I point to one of the large blue words and ask them to read that word, it's usually enough to get the reading rolling and they will continue on to the end of the page.

Here's the next biggie: This book is meant for one-on-one interaction and we just don't have time.

I know it's a reality. Memory care facilities are short-staffed, as are most long term care facilities. Their residents are high-maintenance. If they can't process many residents at one time in an activity, they don't want to hear about it.

I have seen some wonderful memory care facilities where this is not the case, but I've also seen a facility with a fully-equipped Snoezelen room (a multi-sensory therapy environment) that was never used; they did not have the resources to train the staff, and even if the staff were trained, they did not have time to take individual residents into the room nor did they have time to train family caregivers to use the equipment!

As a result we get group activities for people who are more-or-less uncommunicative and confused by the large group. In its defense, the ElderCareRead book CAN be used for a small group, if each member has a book and/or a caregiver with them to assist with the book. I even encourage people to tear out the pages from the book and laminate each page, making it more durable and easier to share amongst a group. In fact, I'm going to start selling them this way...

But even more, I hope that we get to the point where we see the benefits of one-on-one interaction with people with moderate to severe dementia. One-on-one interaction promotes brain activity, decreases negative behaviours (which in many cases I think are a natural result of boredom, confusion, environment and medication) and extends productive life.

OK, this blog is getting too long, but I'll go for one more. The best way to "reach" a person with dementia is to make them remember. If a person with dementia is losing their memory, we want to help them preserve their memory, and the best way to do this is to keep making them use it. Your book doesn't relate to specific memories of the reader's life before dementia.

True, all true. The book's photos are random photos of life: dinner, a golf game, a family trip, sledding down a hill, a child on a merry-go-round. However, I've had a person with Alzheimer's say to me: Why do people keep trying to drag me back into the past when I'm trying so hard just to stay in the present!

Remembering the past can be a fun activity when a person with dementia wants to remember. Flipping through a scrapbook of family photos with a person with dementia is a successful activity, but it's not successful because the photos relate to their past. I think it's successful because a) it's an activity, any activity, just something to fill the long empty day; b) it's fun to look at photos and talk about them, and gee, it's fun to socialize and talk to someone, but it really doesn't matter what photos I'm looking at; c) because it's an activity that demands one-on-one interaction; and d) the caregiver likes looking at family photos.

Speaking from personal experience, my mother (who had vascular dementia) was happy to look at any picture book, because it got her thinking and because it was an hour of meaningful interaction with another human being. In fact, she liked looking at photos that were NOT family photos because it meant that there was no pressure on her to remember who these strange people were.

As an aside, my mother mastered the polite nod, her response to such comments as: "Oh look, here's Rachelle riding her horse -- remember, Rachelle is your grand daughter?" In reality she was thinking: "I haven't got a clue who Rachelle is, nor do I care, but she's something called my 'grand daughter' and it's obviously important to this woman here who's reading with me that I remember, so I'd better nod..." You can read about how the ElderCareRead book was developed, based on my experience reading with my mother, by clicking here.

OK, one more reason: The book is SO new that there is no category for it... picture books for people with dementia just do not exist as a unique category for the purpose of getting an ISBN or for filing in a library or bookstore. Also, it's a book that I have to sell to people who are not its primary readership. It's like selling a children's book to a parent, except even then the child might be involved in the book-buying decision by picking it up from a store shelf and refusing to put it back. But people with moderate to severe dementia are not involved in decisions about their activities or what tools they will use, so I am selling to the caregiver. And I hope that the caregivers (who don't have a lot of time to spend on the computer, so I have to find another way to reach them) realize that their loved one still wants to read, still wants to learn, doesn't want to reminisce all the time, and, as difficult as it is, still wants that one-on-one interaction.

I'll let you know when sales pick up... Oh, and by the way, to purchase a book, click here!

People with dementia can learn, and other thoughts

2009-07-02T09:07:00.000-07:00

Thanks to Stan Cohen of www.maturitymatters.net for replying to my LinkedIn discussion about the three steps to approaching dementia if someone you know seems to be developing memory issues.

Just to remind you those are: Diagnose, Manage, LIVE!

Stan writes that he teaches a mobility and flexibility program at an assisted living centre, and that the people with dementia seemed to do particularly well, even going so far as to learn new movement (or at least mimic the movements...recall of these movements at a later time was not specified). Stan wondered if I had read anything about the possibility of such movement facilitating learning and the development of new neural pathways in people with dementia.

Here's my reply:

Stan: I cannot quote any specific article that I have read pertaining to people with dementia doing well in motion and flexibility programs or that repetitive movements can be learned easily by people with dementia. However, I attended a session at the Alzheimer's Association Caregivers Conference that was all about an exercise class implemented at a retirement park here in Phoenix and how successful it was in terms of fall prevention and decreasing injury due to falls. People with dementia were participating in the class and I think experiencing good results.

I have read a number of articles that talk about the benefits of exercise in slowing the progression of dementia. Exercise (and proper nutrition) are usually spoken about in terms of a program to avoid getting the disease in the first place. At this time I think that little attention is paid to the benefits of exercise for people who already have dementia. It seems that once the diagnosis is made, the patient is handed the Aricept and the TV remote; I know I am generalizing and taking it to the extreme just to make the point. Rather than writing off people with dementia, more emphasis needs to be placed on:

a) examining and questioning the capabilities of the brain. Can new neural pathways be developed by the person with dementia who is given the opportunity to learn new skills and movement? (I say emphatically YES, given my experience with people with moderate to severe dementia who have been deemed unable to read, and yet are able to read my book working one-on-one with a helper). So, I am not surprised that the participants in your program are learning new movements.

b) Examining the role of having a purposeful life and socialization in extending life expectancy and slowing the progression of dementia.

c) Advocating for early diagnosis to put a dementia management plan in place that includes medication, exercise, diet, socialization and learning.

What other things should we be focusing on? I know research into a cure is very important, as is slowing the progression (ok, here's the cynical side of me... we slow the progression until the people who have dementia die and then they aren't such an issue...). However, millions upon millions of people have the disease NOW. How can we improve their lives, slow the progression naturally, and reduce healthcare costs?

I think my (fill in the blank) has Alzheimer’s! What do I do now?

2009-06-29T08:38:00.000-07:00

More and more people are coming forward to say that one of their family members or friends may be showing signs of memory loss. I get this question all the time: What do I do now? Where do I go? Who do I talk to?

There are so many diseases in the world, some easy to diagnose and some more difficult, but everyone knows that the first stop is the doctor. With memory loss, it’s different. For some reason (probably due to the stigma of losing memory) few people know where to turn or what to do next. Here are three steps that you can take with your loved one who may be showing signs of memory loss: Diagnose. Manage. Live.

One proviso: Alzheimer’s disease is a type of dementia. There are some 70 or more types of dementia, with Alzheimer’s being the most prevalent, along with Vascular Dementia (caused by a stroke) and Lewy Body Dementia. People can have two or more types of dementia at one time. Even when considering Alzheimer’s alone, no two people with Alzheimer’s will present exactly the same symptoms or maintain the same capabilities. Each person is different. So, even though there are three steps to take with a person who may have dementia, the exact path that each person takes will differ.

In talking about the three steps, I alternate between talking about the caregiver and the person with dementia in the third or first person to cover both bases; perhaps “you” are the caregiver who is reading this blog, or perhaps “you” are the person with symptoms of memory loss. I strongly believe and recommend that all steps should be taken in partnership between the caregiver/family member and the person with memory loss.

Step One: Diagnose

Memory loss should be treated like any other illness for which a diagnosis can mean the difference between suffering in silence and receiving a treatment that can have a real impact. Memory loss is not a direct ticket to the nursing home as it can result from such treatable medical conditions as depression and anxiety disorders, thyroid disease, B12 deficiency, elevated homocysteine levels, dehydration, infection, brain tumor and others.

If possible, see a doctor who is a neurologist, or who specializes in geriatrics (if the person experiencing memory loss is a senior). If you see your primary care physician, make sure that you go to your appointment well-armed with information about diagnosing the cause of memory loss. If the only test your loved one receives is a memory test, ask for further testing. Such conditions as brain tumors can not be diagnosed by a memory test! Most importantly, ensure that you feel comfortable conversing with the doctor, that you don’t feel as if you are getting brushed off, and that you are receiving thoughtful and knowledgeable answers. If you don’t feel this, find another doctor.

Step Two: Manage

If the diagnosis for memory loss is Alzheimer’s disease or another form of dementia, then it’s time to understand how to slow the progression and how the disease may impact the rest of the person’s life. Talk to the doctor about drugs that are available to slow the progression of the disease. Put together a program of exercise, healthy eating, brain activity and socialization. Studies have shown that all of these factors can contribute to slowing the progression of the disease.

It’s also time to understand how the disease may unfold and affect the person with dementia over the years (again, understanding that no two people have the same experience with dementia). For example, the early stage of dementia is a good time to get financial affairs in order and determine what care options are available so that a plan can be implemented “when the time comes.” Now is the time to have thoughtful discussions with family and friends about what the future may bring, so that family members are not forced into making reactive and upsetting decisions about these important issues. It’s also a nice time to put together family history scrapbooks, make videos, reconnect with long lost family and friends.

Step Three: Live!

Dementia is not a death sentence. Well, OK, it can be. We will all die sometime, but people with dementia know more or less when they will die and what it might look like. So, in the years that are left, it’s time to live. Yes, driving will become unworkable at some point. People with early-onset dementia may lose their jobs. Activities that were once easy, requiring no thought, may become more difficult or indeed, impossible. However, that does NOT mean that a person with dementia must resign themselves to a life of watching the TV alone in their house with a caregiver, or to mindless activity in a nursing home. In fact, don’t, just DON’T!

While it’s hard enough for people without a life-threatening disease to find purpose in life, many people with dementia find new purpose in their lives when they know life is limited. It’s time to ask one’s self: How am I going to use these last years of my life so that I can have the greatest impact on my family, my community, my country, my world? People with dementia are in demand as bloggers and speakers, so that they can pass along their experiences and recommendations to a public hungry for more information about dementia. There is no one who can comfort a newly-diagnosed person more than a person who already has the disease and who can pass along reassurance and counsel. A person with dementia might also find new purpose in volunteering for other causes, or in travel, or in taking up a new hobby. Anything one can do to keep the brain and body active is essential to slowing the progression of the disease, even when one reaches the later stages of the disease.

The person with dementia and their family may find that many of their friends stop calling to invite them out; dementia still has a terrible and unfounded stigma that makes even “good” friends reluctant to maintain former relationships. Through your local Alzheimer’s Association support groups or through your faith community or senior’s centre, find other families dealing with the disease and with whom a social group could be formed. Just because a person has dementia doesn’t mean that they don’t enjoy going out for a beer on Friday night!

In later blogs I will endeavour to break down these three steps into more detail. In the meantime, I welcome comments and emails to laura@eldercareread.com.

Introducing an Important Addition to the ElderCare Referral Scene

2009-06-22T18:51:00.000-07:00

Occasionally I will make a recommendation regarding a service or product that I come across, and here's one that I am eager to share with you.

Good friends of mine have just started Guiding Light Assisted Living Connections in Phoenix, Arizona. With the mission of "lighting the way to senior care," Guiding Light ALC will appeal to family members who must start thinking about care for their parents, and seniors who are being proactive about investigating their options for their future (see "Having the Talk, Part 2!). Guiding Light ALC will assist families with senior placement issues, discussing your loved one's needs and referring you to options for assisted living, independent living, in-home care, memory care and more.

I can whole-heartedly recommend Guiding Light ALC for two reasons: First, they don't charge a referral fee to the family members who are asking for help. It is a no-fee referral service. Second, they are wonderful, trusted people who I know you will find to be resourceful, kind, creative and sympathetic. They are a [free] ear when you need one.

In addition, the Guiding Light ALC web site lists support groups and classes. Their blog is at blog.guidinglightalc.com and their first post is about heat exhaustion and seniors, appropriate for our Phoneix climate.

Information for Physicians about Lewy Body Dementia

2009-06-18T07:07:00.001-07:00

Here's a post worth repeating. This just in from the LinkedIn Discussion Group on Lewy Body Dementia:

LBDA Launches New Resource for Physicians Treating Lewy Body Dementia

ATLANTA , GEORGIA , June 10, 2009 – The Lewy Body Dementia Association (LBDA) is pleased to provide medical professionals with the latest authoritative information on Lewy body dementia (LBD). Physicians, nurses and other health care professionals can now access easy-to-read tables and figures on LBD diagnosis and treatment options along with family- and patient-centered publications that can be downloaded or ordered at no cost at http://www.lbda.org/go/physicians .

If you are a physician, please familiarize yourself with the symptoms and treatment options for this disease. If you are a family member or someone who thinks they might have symptoms of this disease and wish to better educate your doctor, make a print out and take it with you to your next appointment.

Purpose and activity slows progression of dementia: More reinforcement

2009-06-14T13:06:00.001-07:00

I have not quite decided what I am going to do with all the information swimming around in my head about Alzheimer's and other forms of dementia. It’s all got something to do with new education programs: educating people with dementia and their caregivers about living their best life and managing the disease, reducing the “I think my loved one has dementia now what do I do” dilemma down to three digestible steps (diagnose, manage, live), eliminating the stigma of dementia, and providing a one-stop service for people looking for answers. Lofty goals and still kind of fuzzy!

However some fundamental truths are emerging that I know will become the guiding lights, the beacons for whatever I do in the future, and the primary one is that living with purpose, finding activity that provides purpose, can slow the progression of dementia.

In a big way.

I keep seeing this over and over again. It started with Richard Taylor. When you are with him, it’s evident that there is “something wrong.” However, finding his purpose of advocating for people with dementia has taken him all over the world and he is now working on his second book. But, the progression of his Alzheimer’s is so slow, the symptoms so muted, that people have actually accused him of faking his disease.

Not everyone is going to become an internationally-recognized author and speaker upon diagnosis, but please watch this video, which shows Sarina the artist, diagnosed with Alzheimer’s in 1999, and John, her husband. Sarina was a graphic designer in her professional life. A physician suggested that using her prior skills and applying them to her new life might help to control the behavioural issues that were emerging. When she started painting, her behaviour changed dramatically. Her social skills and self-esteem increased, and, in the words of her physician, Sarina is “taking advantage of opportunities presented to her.”

I’m looking forward to your comments.

Having the talk early

2009-06-08T16:46:00.000-07:00

This blog backs up what I wrote in my previous blog about thinking about your future (or your parents' future) early in, when you can be in a proactive mode rather than reactive.

But who is Veronica? Nevermind, what she says is 100% on the money!

http://veronica-lthc.blogspot.com/2009/06/coordinating-informing-aging-in-place.html

Having the Talk: Part 2: The best time to have "The Talk" is never

2009-06-03T16:43:00.001-07:00

So when is the best time to have "The Talk" about your elderly parent's future plans? The best time is "never."

What? Didn't I just say a few weeks ago that it's essential to have the talk with your parents before it's too late, before the situation becomes an emergency, before events in your parents' lives make you react rather than be proactive?

Well, I am actually directing today's blog at the parents themselves if they are in their 50s, 60s or 70s, just starting retirement or enjoying an active healthy retirement with no issues on the immediate horizon. Today's blog is also directed at adult children in their 20s, 30s and 40s who may have parents in the above age groups.

You've heard of Living Wills, documents that inform your family and other parties about what you want to have happen to you if you have a serious health issue, are facing death, and are not in a position to comment at the time on how you want your end of life to play out. For example, you might be in a vegetative state but don't want to be put on a feeding tube, but obviously you aren't able to make that decision at the time.

I'd like to introduce the concept of the "Aging Will." This is a document that outlines how you would like to live out your advanced years, taking into consideration the various challenges you may experience during that time. Many of us spend a lot of time mapping out our younger years and our middle years, and might even create a "bucket list" of the fun, challenging things we want to accomplish before we die. However, almost no one considers the mundane matters that we prefer to avoid. An Aging Will can help guide you through this process.

There are many things that can be included in an Aging Will. For example, should you develop memory loss, do you want to have a diagnosis right away or would you prefer not to know. Are you prepared to be a partner with your loved ones (spouse, children, extended family) in terms of addressing medical conditions, or are you going to fight them all the way? Would you prefer to live independently in your own home for as long as possible? What care services would you engage to ensure this happens? At what point would you consider moving into assisted living or a long term care facility? Do you have a particular facility in mind? If so, at what point should you put your name on a waiting list to ensure that facility is an option in the future? Should you develop Alzheimer's disease, do you want to live with one of your children or would you like to move directly into a memory care facility? If your children feel that they would like you to move in with them, which child? Any child, even if they live the other side of the country? If circumstances change for that child (divorce, job loss, illness), what are your backup plans? What if your spouse passes away? How will that change your living situation? What will your social activities look like? Will you get involved in the local seniors' centre (many people think "yes" until they are 80 and don't want to hang out with all the "old people"). What about volunteer activities? In what other ways can you add meaning to your life? At what point should you put away your driver's license and sell the car? Do you have long term care insurance? How would you pay for long term care? When should children or other legal parties take over your financial affairs?

There are many more questions to be asked. However, addressing issues such as these when there is no pressure to act on them immediately, allows for open discussion without too much emotion. When, in the future, there is an emergency that may, for example, require a move to a long term care facility, you and your family can refer to the Aging Will, review what you have already agreed upon, and then act on the steps to be taken. An Aging Will also provides a reference point for your family should you develop a memory disability such as Alzheimer's disease and are no longer capable of participating in decision making.

Don't avoid these difficult questions. Consider an Aging Will; it's for your future peace of mind and that of your family.

Building Strength and Confidence

2009-05-28T18:18:00.000-07:00

It’s taken me over three weeks to finally write the second segment of having the “Talk” with your elderly parents, and there has been little other writing going on as well. However, after a few weeks of stress around our household, supplemented by my going to Toronto for 9 days to help care for my 84-year-old stepfather when he came out of hospital after a heart operation, I am now back on the plane to Phoenix and a resumption of some sort of normalcy.

First, a bit about my stepfather. He is doing very, very well after an operation to replace a heart valve. This operation is an option for elderly people suffering from declining energy due to reduced blood flow through calcified heart valves. As there is only a 10% chance of something going wrong for patients who are otherwise healthy – and an almost 100% chance of the patient dying within a couple of years if they don’t have the operation – the choice to have the operation is almost a no-brainer, but a scary one at that.

We expected him to come home after 9 or 10 days recovering in the hospital and assumed that he would need 24-hour care by us daughters, supplemented by a nurse who would visit daily. As it turned out, the rehabilitation unit of the hospital assessed his living situation (he lives alone in an apartment), assessed our “care plan” (which appeared to get a thumbs down!), and determined that they would keep him in rehabilitation. While there, the physiotherapists would work with him daily to build his strength, balance and coordination until he is at the point where he can go home and function on his own. He is now in his second week in rehab, and is partaking in a program of muscle-building exercise, walking and training to cope with household hazards such as climbing into a bathtub (they have a “fake” bathroom in the rehab facility with various pieces of equipment to navigate). In addition, if he had to cope with stairs to get into his home (which he does not) they would work with him until he could climb stairs without losing his step or balance. All-in-all, his confidence and strength are building daily, and he will be the “new and improved” dad when he finally gets to go home.

We are thrilled with the level of concern and care given to him, a lovely, talkative, mild-mannered, intelligent 84-year-old man, but nonetheless, someone that society could just as well written off. We are amazed that he was not “booted to the curb” after he had recovered in the hospital, his care left to his well-intentioned but not-as-capable daughters. We are in love with the hospital staff, whose unending kindness and respect for our father and indeed all the other “rehabbers,” most of whom appeared to be over the age of 70, helped to build confidence and self-worth in their patients.

I feel somewhat vindicated in thinking all along that people who are in the later stages of life can in fact become physically stronger given the proper physiotherapy, resulting in more confidence and hopefully a chance at staying in their own home for longer periods of time. It's never too late to get in shape! Should it take open heart surgery, or losing a foot to diabetes, or breaking a limb to enable someone to access these services? If he had never had need of this surgery, would his physical abilities have slowly declined until he could no longer live independently?

His experience brought to mind a session on “Fall Prevention” given at the Alzheimer’s Association Caregiver’s Conference in Phoenix in February. In this session we learned about a multi-part course provided as an option to residents of a retirement village in Phoenix. The objective of the course was to increase strength, coordination and balance among the participants, and to track whether the number of falls experienced by participants in their home increased or decreased after completing the class. As I recall the exercises were based on Tai Chi. Participants loved the classes. Strength and overall fitness and confidence increased, falls decreased and, as a nice side benefit, participants became a close knit group, socializing outside of the class.

How do we make seniors’ strengthening and fall prevention classes proactive like this one? How do we move them out of the seniors’ centres (which some seniors actively avoid because they don’t want to hang out with “old people!”) and into the places where seniors live?

And oh yes, I briefly had the Introduction to The Talk with my stepsister, my stepfather’s daughter, to see if she had broached the subject of investigating assisted living with him, just in case he was not able to live independently in his apartment for much longer. No, she hadn’t… sigh, here we go again!!

Next post, The Talk, part 2 -- I promise! Actually, it's going to be about something that can help avoid The Talk altogether or just make it easier for all involved: The Aging Will.

Is the HBO Survey True?

2009-05-13T17:34:00.000-07:00

I read with interest on www.hbo.org about the survey that was done in concert with creating the documentary "The Alzheimer's Project." The result of the survey is that 54% of Americans have been touched in some way by some one with Alzheimer's disease (I am guessing they are not differentiating between Alzheimer's and other forms of dementia). Even I was amazed by that figure, although I know that, of myself and five other girlfriends who were in college together (we are now in our 40s), 50% of us has had a parent with Alzheimer's or another form of dementia. I guess we fit right in.

So, I wanted to find out if this figure could hold in a separate survey. I created a poll on LinkedIn, and you can answer the poll at http://polls.linkedin.com/p/37725/lnetj. I'll let you know the results!

Oprah! We need you!

2009-05-05T17:53:00.002-07:00

How many shows has Oprah dedicated to the elderly and eldercare issues and/or dementia? I'm guessing NONE. If anyone can bring attention to these issues (not to mention helping to break the stigma of Alzheimer's and other forms of dementia) it's Oprah.

That's what Dr. Bill Thomas thinks too, and he's created a video message to Oprah and posted it on YouTube. I invite you to watch, and I sure hope Oprah is watching too!!

In case this doesn't work, the link is http://www.youtube.com/watch?v=rXsqwesaU_A

When to Have "The Talk" with Your Parents

2009-05-05T10:44:00.000-07:00

This will be the first of a few blogs that talk about having "The Talk" with your parents. And I don't mean the Birds and the Bees talk either!

As our parents age, we adult children feel the urge to get involved in their lives and their plans for the future. We are concerned about where they will live in the future, when caring for the house might become too difficult. When should they move into assisted living? Should they move into an independent living situation? We have no clue about their financial information: where are their bank accounts? their wills? who is their lawyer? how many credit cards do they have? what are their balances? what charities are they supporting and by how much? What sort of care will they require should they become ill? And on it goes.

But, for many reasons, we hold off. Our parents seem healthy enough for now. They seem to be ok in their house, despite the complaints about the stairs and the lawn upkeep, and despite mom's fall last week. And we don't want to pry too much into their financial situation for fear of mistakenly giving the impression that we're after their money. And, every time we start to bring up the topic of the future, our parents shut us down.

Well, I'm here to tell you that you need to have that talk: NOW! Here's a little bit about our family and the small predicament my parents were in after a crisis.

My mother and stepfather lived in a 2-bedroom apartment. My mother was suffering from some memory loss and the occasional fall, but nothing too serious. She was dependent upon my stepfather for everything, but he was muddling along. To us know-it-all kids, it was abundantly clear that they ought to be in some sort of assisted living situation. How long could he keep up? What if he died and we became my mother's caregivers? What if he died and we had no clue even where their bank accounts were, let alone anything else?

So, we tried to bring up the topic, only to be told that they didn't want to talk about it. The bit about the financial information hit home though, and my stepfather, of his own volition, created a binder with everything we could possibly ever want to know about their finances. THAT was extremely helpful. But living situation? Caregiving strategies to give him some relief? Help for my mother, whose memory was getting worse and worse? Nope.

To their credit, they did put their name on a waiting list for an apartment in an assisted living facility, but that was 6 years ago. My mother has passed away, and their name still hasn't come up to the top of the list!

When my mother had a major stroke, she lost most of her memory and the use of her legs. She was in rehab at the hospital for six weeks, after which time they were told she had to move to a nursing home or go home. Home care was impossible as she would require 24/7 care and it was too much for my stepfather. They were both in their 80s. They didn't have the space to have someone live with them all day, and, perhaps there was potential for home care, but we hadn't talked about it or researched it.

So, he had one week to find a home for her. They had done NO research into the homes in their town. Imagine if you were given one week to find a new home? The home where you would literally spend the rest of your life, where you would find basic medical care, where all your meals would be cooked and served, and not by you. The centre of your social life, the room where your belongings will be placed, where you will sleep, wake up, and do just about every activity you would ever do for the rest of your life. And, not only that, but you had never even thought about what sort of home you'd like to live in for the rest of your life?

Clearly one week is not enough time for such a major life change. But that's what he had, and considering that, my mother lived in a home that was "pretty good," although it could have been much better if they, and we, had put some thought into it and researched the options. I think this is how many elderly people end up in substandard living situations, requiring emergency intervention at some point.

In future posts I'll be talking about the decisions that you and your parents ought to be making at different stages in their lives, and how to approach "The Talk," recognizing the things that might be going through your parents' minds.

Is Alzheimer's a Memory Disability?

2009-04-29T11:48:00.000-07:00

I wanted to get a read from people, some input, perhaps even a reality check...

I think that Alzheimer's and other forms of dementia ought to be thought of as a memory disability, a disability of memory.

To be sure, it's a little different than your typical disability such as paralysis, missing limbs and the like, but there was a time, not so long ago, that having such a disability meant that one resigned oneself to a life behind closed doors, not being able to go anywhere, completely dependent upon caregivers for everything. That's where we are at with dementia right now. We are at the stage where people in wheelchairs were when they had no ramps to get on the sidewalk from the street, where there were no lifts into the bus and when there were no ramps to get into buildings and no open door buttons.

If we can think of Alzheimer's and other forms of dementia as a memory disability, then we can start thinking of ways to enable people with this disability. OK, so we can't do a brain transplant quite yet, but what CAN we do?

For example, yesterday I read about how baby boomers are preferring to move to age-restricted adult communities rather than "aging in place" (Download the report from www.MatureMarketInstitute.com under “What’s New.”). How about if these communities were designed so that they enabled people with memory disabilities to get around in a secure environment without fear of getting lost? Kind of like a memory care unit on steroids?

Using the term "memory disability" also gets us away from thinking that all dementia is represented by Alzheimer's disease. I've heard that there are anywhere from 49 to 76 different types of dementia. "Loving Grand" does a nice job of explaining this at her blog. The Alzheimer's Association perhaps needs to think about representing all dementias... how about the Memory Disability Association?

Let me know what you think. Please.

Also, I had a great time talking with Patricia Grace about our family's experience with our mother, who had vascular dementia. I also talk a bit about my book and about the idea of "memory disability." You can listen to the interview at http://www.blogtalkradio.com/Patricia-Grace.

Alzheimer's: An opportunity to be reborn?

2009-04-24T09:30:00.000-07:00

I've been reading a book by Dawna Markova, entitled "I will not die an unlived life." She is the person who wrote the poem by the same title, which starts off "I will not die an unlived life. I will not live in fear of falling or catching fire." I didn't even know she had written this poem, the one that's been taped into my daytimer for the past two years! If you're looking to reignite your sense of purpose, your passion, in your life, this is the book for you.

In any case, in the closing chapter of this book, she talks about a speech she heard by the spiritual teacher Ram Dass. At the time of this speech, he was getting around via wheelchair, having had a stroke. He talked about the many "reincarnations" he had experienced in his life, all of them having nothing to do with physical death and rebirth, but more like a life change that involved radical and complete reinvention (like a total 360) and the death of who he had been before. In the '50s he had been a Harvard professor. In the '60s he "tuned in and dropped out." Then he went to India and came back as the spiritual guru Baba Ram Dass. In the '70s and '80s he did a "work of service" with hospitals in Nepal, India and Guatemala. And then, he had a stroke.

He said, "If I think back to my old life -- my golf clubs in the closet, my cello in the living room -- if I think that I'm the person who played music on that cello, I would really suffer and be so sorry for myself. But I'm not him. He died. Now I've been born again into this disabled body. This is who I am now."

When someone develops a form of dementia such as Alzheimer's, we talk about loss, about how the person is disappearing. It's true. According to Ram Dass, the person is dying. We know that the person with dementia will eventually die in a physical manner, but in the meantime, the person who was, who we knew, who he or she knew, is dying. But, we stop there. Instead, we need to think about rebirth, about how this person is now reborn into a body with dementia, a disabled body, a person with a memory disability.

While the person with dementia (and dear reader, if that person happens to be YOU, I apologize for talking about you in the third person!) is going through the process of rebirth, what do we do??? Well, for the most part, we try to drag them back. We force them to remember as much as they can. We try to hold on to the person we think they are, the person we want them to be. We think we are helping. We're actually being a little selfish. It's as if a loved one is having a near-death experience, and here we are holding on to them, dragging them back, and all the while the loved one is yelling,"but but... I want to check out that bright light down there!!!"

So what ought we to be doing? Rather than trying to hang on to the person we remember, the person we are most comfortable with, we need to help them live in their new life. We need to recognize dementia as a "disability of the memory," and deal with it. We need to enable the person, and help them figure out what this new life is going to look like. We need to look for the bright lights and the opportunities, and write a new script. Much like when society started to recognize that people in wheelchairs might like a ramp from the road to the sidewalk, we need to be building on ramps for people with memory disabilities. It's a new life, and we all need to be like midwives, helping to birth the person with the memory disability into their new world.

Watch the attitude you project

2009-04-23T14:02:00.000-07:00

Why do we put so much emphasis on memory? Why when a person is diagnosed with dementia and is losing their memory, do we think this is such a terrible awful thing, and why, in the process of thinking it's a terrible thing, we make the person who can't remember feel terrible as well?

There is an interesting article at http://www.eurekalert.org/pub_releases/2009-04/ncsu-tmw042109.php, which talks about a study done by researchers at North Carolina State University. Seniors who were told that, generally speaking, people their age performed badly on memory tests, did indeed perform badly on the memory test they were subsequently given. We are what we are told we are.

So, when you are working with people with dementia, make sure that you are not projecting a negative message, a stigma, about people who have the disability of not being able to remember.

The assumptions I thought I no longer made

2009-04-19T22:16:00.000-07:00

Today I caught myself red handed, in the act of making a terrible assumption about seniors.

Flipping through our local Sunday morning newspaper, I came across the copy of USA Today. On the front cover was a photo of an elderly lady and a young girl, who looked to be about 9 years old. The story title related to the photo was "Make a Difference Day... winners of our contest" or something to that effect.

My immediate thought was "Humph, there they go again stigmatizing the elderly as always needing someone to do something nice for them, as the perfect targets for 'Make A Difference Day.' Here we have a lovely little girl helping out the nice old lady." Images of girl scouts helping little old ladies across the street flitted through my mind. With a sigh I turned to the page containing the actual story.

Well, wasn't I in for a surprise. Turns out the "little old lady" on the front page was actually the WINNER of the contest, and SHE was the one who made a difference in the little girl's life. This exemplary senior citizen organizes yard sales where everything is free for the taking. The girl was able to get a brand new bike, something that her family could never afford to get her, all thanks to this lady's "yard sales." And the best part was that the lady is 97 years old.

Well, did I feel stupid and humbled, and most of all, really surprised at myself. My absolute first assumption was the the elderly lady on the front cover was too old to make a difference, and therefore the little girl must be the winner of the contest. And this is ME, who I had thought was enlightened, preaching to all who will listen that seniors, particularly those with dementia, need to have opportunities to give back, to have a purpose in life, and that we are guilty of taking away these opportunities.

Guess I still have some work to do...

Giving back is key

2009-04-18T19:46:00.000-07:00

Last week I was a guest blogger on www.agingwithgrace.com. You can see it at http://awgcareconnection.blogspot.com/.

I'm often asked how I came up with the idea for ElderCareRead books. It all started with a question "Is your loved one provided with opportunities to give back," or something to that effect. This blog talks about where that question came up and how it changed the way I interacted with my mother. I remember now that at the time I was reading Dancing with Rose, by Lauren Kessler, a book that made me realize how much more people with Alzheimer's are capable of. While I didn't mention this in the guest blog, I remember how this book made me shift my paradigm.

Please read my guest blog and make comments (Thanks Ellen!!). While you are there, take time to look around Patricia Grace's site and learn about her services. Perhaps Aging with Grace is a health benefit on your employer's workplace benefits listing and if you have elderly parents, it would be ideal for you to take advantage of her helpful counsel.

Summer Camp for Seniors

2009-04-13T11:04:00.000-07:00

I'm cheating a bit during Passover because I just don't have much time to write! However, please read an important article by Ellen Brandt, entitled Summer Camp for Seniors. http://www.babyboomerknowledgecenter.com/. Scroll down a bit to find it; it was published on April 11.

Based on the article's title, I thought that it would talk about some sort of new and innovative summer program for seniors. Summer camp for seniors -- why not!! An adventure in the northlands, camp fires, easy hikes, a bit of boating, roughing it in the cabins... sounds like fun.

However, what Ellen writes about is the woeful state of affairs in our nursing homes, even the upscale ones, when it comes to activities. There is no wonder that our elders suffer from depression and boredom once relocated to a nursing home. They need much more than good food and a nice room. Why is it that when re relocate a senior, we feel the need to park their brain? Why do we equate being old with being like a kindergartner? There is no wonder that seniors, for the most part, dread going into a nursing home.

Incredible photos

2009-04-05T20:40:00.001-07:00

Do yourself a favour today and visit the web site of Michale Hagedorn. www.michaelhagedorn.de. He is a photographer that specializes in health care and the elderly. All of his photos are incredible, but click on "Das Alter" (the web site is all in German) under the Portfolios menu, and then click on Demenz. His photos are so honest. They really tell it like it is.

Televsion for people with dementia

2009-04-03T15:15:00.000-07:00

I just read a very interesting article entitled "Video Programming for Individuals with Dementia: Assessing Cognitive Congruence" published in the American Journal of Alzheimer's Disease & Other Dementias.

In a nutshell, this article presents the findings of a Canadian study into how long a person with dementia will watch a video. Several videos were used for each person, including an episode of I Love Lucy, a cartoon, the news and a "video respite" starring Molly the caregiver. (hmmmm). I won't go into the intricacies of how the researchers measured the length of time that a person watched each video, but it's quite interesting. The people involved in the study had varying degrees of dementia, from mild to severe.

The study found that the news received the least length of viewing time, and I Love Lucy the most. Video respite, unless I am reading this incorrectly, didn't receive a whole lot more attention than the news. The also found that the amount of time a person with dementia paid attention to a video did not correlate to how much television they watched prior to diagnosis with dementia.

From the results the researchers concluded that video programs that are less complex may be more engaging for people with dementia. While I don't think it takes a rocket scientist to figure that out, I'd have to say that most of us, including most memory care facilities, have not yet come to that same conclusion. I have seen some homes where television has been outright banned and others where tv viewing is restricted to videos, but I wonder how much guidance has been provided in selecting those videos. The study also points out, correctly, that what the person with dementia watches depends largely on what the caregiver wishes to watch, so quite often it's the news, or, in the case of where my mother resided, the Country Music Channel.

By "not complex" the study suggests that videos have simpler backgrounds, less going on, simpler plots, uninterrupted narrative. This is why I Love Lucy came in first, followed by Bugs Bunny and Blues Clues. They also point out that people with dementia are most likely going to watch more videos in the future because of the widespread existence of televisions and DVD players, and the fact that technology provides a low cost, convenient and simple intervention for residents in long-term care facilities. Television is provided as a substitute for companionship, sad as that may seem.

Given that tv is not going to go away, I think it's time to start seriously considering the potential for video programming, and perhaps even video games, for people with dementia. I think it needs to be more interactive and not as passive, and I think that programming can be developed that is easier for a person with dementia to follow, understand, learn from and appreciate.

Ideas anyone?

What????

2009-03-31T13:08:00.000-07:00

Just a short post after a long absence due to a March break vacation... But as per usual I am spurred into action by Richard Taylor (www.richardtaylorphd.com), who spoke at the recent Alzheimer's Disease International conference in Singapore. I truly don't know how he does it, but he's back already and writing and sending out his newsletter. He wrote extensively about the conference and his presentations and a link to his newsletter are available on his web site.

So what did he say that made me sit down and write immediately??? He writes that there was only one (yes, that's right, ONE) representative from the Alzheimer's Association in the USA at the conference. This is an international conference with representatives from 77 nations who are banding together to fight dementia. In fact, Richard reports that the word "Alzheimer's" was only mentioned once, and that the rest of the world is using the word "dementia" in recognition of the fact that we are facing a much bigger problem and that Alzheimer's is just a part of it.

One representative. Perhaps this is the time for the US to stop being so centrist in believing that we know best (and I use the term "we" loosely as I'm actually Canadian) and start joining the rest of the world in breaking down the stigma of dementia.

2009-03-12T17:12:00.000-07:00

I don't think it's because I have a heightened awareness of Alzheimer's disease. I don't think it's even that I am getting to be that age where the parents of my peers are now in their 70s and 80s. Perhaps it's more because people know that I am involved in working with people with dementia and that I have published a book for people with dementia, and so they feel comfortable opening up. But it seems that everywhere I go, I meet someone who is caring for someone with Alzheimer's, has a parent with Alzheimer's, has a neighbour with dementia, or thinks they might have it themselves. In fact, I think I meet more people who have someone in their family with Alzheimer's than people who have someone in their family with cancer or heart disease.

I quoted the statistics in a recent blog. 5.1 million Americans have Alzheimer's disease. And that's just Alzheimer's, not the other forms of dementia. But what does that mean in real terms?

It started to hit home for me last April. I went to dinner with five of my girlfriends from university. We all compared notes about our aging parents and the various challenges. Out of the six of us, two had mothers with some form of dementia, and another had a mother in the early stages of Alzheimer's. That's 50% of us with an immediate family member with dementia.

Since then, I have been in random places like the hairdresser and a public bathroom, and have overheard people talking about a friend or spouse with Alzheimer's. I've handed out the number of the Alzheimer's Association and also my phone number, in case they wanted to talk. I also went to see a husband and wife, where the husband is in the late stages of dementia, and the wife's sister was visiting. She wanted two copies of my book because her neighbour that they see regularly had Alzheimer's, and her husband was in the early stages. So between these two women, they were caring for three people with dementia. And, an online friend and fellow blogger Kristen Martini (www.simplymartini.com) whom I "met" on a completely different topic, well, turns out she cares for a friend with, you guessed it, dementia. As she wrote recently on her Facebook page "Holy dementia bat girl!!"

This is not only a call for more research dollars, but a call for more widespread recognition of the challenges our society faces with Alzheimer's disease. We need to bring this disease out of the closet, and fast. People with Alzheimer's disease need "enabling" not "disabling." We need a way to support and enable the people with dementia so that they can function in the wider society for a longer period of time after diagnosis, and this doesn't just mean through drugs. It means acceptance and support by general society so that all the weight does not fall on the person with the disease and their caregiver.

Discuss long term care with your parents now, before they need it

2009-03-08T23:33:00.000-07:00

I was reading a post by Phil Bosta (thanks for providing so much material Phil!) about how his father made sure he was present at his own funeral by making an audio tape greeting 20 years before he actually died. I admire that kind of proactiveness.

While your parents may not be prepared to make a tape of themselves to be viewed at their funerals, there are many things your parents can be doing now that will just make things collectively easier on your family should one or both of them die or develop Alzheimer's and/or require long term care. I'll talk about some of these discussions and decisions in future posts, but right now I'd like to focus on long term care arrangements.

I am no expert; I simply have been through this with my parents, who, staunchly British as they are, refused to talk or think about preparations should they need long term care, until it was almost too late. As a result, my stepfather had to scramble to find a long term care facility that would take my partially paralysed mother, who was showing signs of advanced dementia, before the hospital rehab kicked her out. Based on these experiences, and some reading I have done, my recommendation is start talking about long term care arrangements NOW, when they don't need it. .

First, what are their priorities in terms of care? Stay independent in their own homes no matter what? If so, do they have the space and the budget for a care provider to come into their home (or possibly live in their home) should they require one? Would they prefer to live with you in your home, and are you even prepared to discuss that option? Is their priority to "not be a burden on the children" and would they prefer their independence while having the security of medical assistance at close hand if needed? Then assisted living might be the way to go.

Assisted living homes provide independent apartments or rooms for people. They can come and go as they please. They may be able to prepare some meals in their apartment, but also have the option of communal dining on a daily basis. Assisted living facilities are typically not set up to take care of people with extreme medical conditions or dementia, but a nurse is on site if needed. In many complexes, a memory care unit for people who have Alzheimer's disease or dementia is also either in the building or on the campus, allowing couples to remain within close reach of each other.

Many desireable assisted living and long term care facilities have waiting lists. My stepfather has been on one for at least five years. Talk about what they would like out of an assisted living facility. What is important to them? Assisted living facilities range from small buildings that look and feel like a traditional nursing home, to large apartment buildings with underground complexes that house a bank, a drug store, a restaurant and an amphitheatre, creating the feel of a small town without having to go off campus. Many are also faith-based communities, or meet the needs of a specific cultural group. Think also about what they would like their apartment to look like. Would they like a small kitchen to prepare their own breakfast? How much space do they need? Do they need it partially furnished? Socially, is there a place where some of their friends have gone or are considering going? Do they want a place close to shops or a mall? Should it be close to one of their children's homes and/or, if that requires a move to another town, would they rather stay in their own community?

If your parent(s) opt to stay in their home for as long as possible, discuss in advance under what terms they would move to a traditional nursing home (when there are medical issues too severe for an assisted living situation). This is almost like a living will. If one of your parents develops Alzheimer's disease, and the other spouse must make the difficult decision that they can no longer care for them, it is helpful to be able to refer back to a document where the spouse with Alzheimer's, when in a frame of mind to think about such things, made the decision for their husband/wife and the rest of the family that they should go to a long term care facility should such and such situation arise. It doesn't completely eliminate the enivitable guilt, but it helps to add clarity to the situation and to guide the discussion.

Which reminds me... take notes. Designate a family member to take and maintain notes, even if these discussions are taking place via a family conference call on the telephone. If the going gets tough, you will need to refer back to decisions that were made previously, with clarity and reason.

It is also important that your family does not make the decisions for them, and then, more or less, tell them what you want them to do. Honour their many years of making decisions for themselves and the family, and make sure that you and your siblings do not have too many side discussions without them present.

These are difficult conversations to have, because your parents know that they are envisioning the last place they will ever live. There's only one way out of their last home, and it's hard to talk about it! However, by discussing it openly now, they will help to ensure that their last home will be the best it can be.

Setting your loved one up for success

2009-03-02T15:16:00.000-08:00

Read this post to the Caregiver Examiner by Anne Togher. She writes about how important it is to ensure that your loved one with dementia has a feeling of success and not frustration when answering your questions. It's all about how you phrase the questions. Love it!

http://www.examiner.com/x-4682-Caregiver-Examiner~y2009m2d28-Dementia-Care-Setting-your-loved-one-up-for-success

2009-03-01T14:45:00.000-08:00

First off, I want to say that I would never impose my religious beliefs on anyone. But I came across the following "prayer," which could almost be called a poem, and even if you took out the words "Lord" and "God," it could just be a little talk that one has with oneself. It's called "Morning Prayer." It's meant for caregivers, but is appropriate for anyone that deals with daily stress. I know I could use it!

Dear Lord,
So far I've done all right.
I haven't gossiped,
haven't lost my temper,
haven't been greedy, grumpy, nasty, selfish, or overindulgent.
I'm really glad about that.

But in a few minutes, God,
I'm going to get out of bed.
And from then on,
I'm going to need a lot more help.

This came from the web site of Caregiver Relief (http://www.caregiverrelief.com). This is a service provided byDonahue Vanderhider, who is a gerontologist and the executive director of a large assisted living facility. On this web site caregivers will find resources and information for stress management. Their goal is to provide caregivers with resources to meet their emotional, physical and spiritual needs, as well as those of the people they look after. It's worth taking a look at if you are a caregiver.

Living in the Present

2009-02-23T18:55:00.000-08:00

Yesterday I went rock climbing with my son and his youth group. I had never really been rock climbing before, except once on a wall on the Intrepid aircraft carrier in New York City. Why they had a rock climbing wall, I don't know. So yesterday was my first time really learning how to do it: watched the video, wore real rock climbing shoes, learned how to put on the harness, and was instructed on how to belay, that is, be the person at the bottom of the rope ensuring that the person climbing doesn't fall.

I got to climb up the wall twice, clinging to the footholds on the way up. The first time I made it half way up the wall, and the second time three-quarters of the way. It was a very tall wall. Both times, when I got to a certain point, I got dizzy. I tend to get vertigo or some sort of panic attack when I get too far up a wall, or when I think about walking on the glass bricks in the floor of the observation deck of the CN Tower in Toronto, or hiking on a mountain path that's too close to the edge. I'm not afraid of heights per se. I never seem to miss an opportunity to put myself in a position where I might get an attack of vertigo!

In any case, my son asked me how far up I got (he didn't belay for me as he's only 11!). I told him that I had climbed twice and got dizzy and had to come back down. He said, "Yeah, don't look down!" I replied that even looking up made me dizzy. With the wisdom of his years, he said, "Just look at the foothold in front of you."

Upon later reflection, I realized that this is a great metaphor for life. Don't look down and don't look up. Don't look back (except to realize where you took a wrong foothold and slipped up) and don't look too far forward (except the next few steps just to know where you are going; no point worrying about the footholds at the top. Too much worrying can make you dizzy). Just look at the foothold in front of you and deal with the issues at hand. And don't forget to celebrate each successful step where you don't fall off!

I think it's important, especially if you are caring for a family member with dementia, or if you yourself have dementia, to keep this in mind. It's hard enough for anyone to stay in the present, but you can't worry too much about what's to come and you can't fret about what's past, except to learn from it and to prepare for the future. The rest of the time, grab the foothold in front of you!

I'm Still Here

2009-02-19T21:30:00.001-08:00

Well, yet another reason to travel to Toronto this year...

There is a play called "I'm Still Here." The play, developed either by or in association with MAREP (Murray Alzheimer's Research and Education Program, based at the University of Waterloo in Waterloo, Ontario), is, according to the MAREP web site:

a powerful, research-based play that presents a realistic portrayal of the experience of dementia from the perspectives of those living with dementia and their families. The play is performed by actors from ACT II Studio housed at Ryerson University.

I encourage you to view the brief video exert at http://www.marep.uwaterloo.ca/conferences/index.html. This exert depicts the interaction between a mother who is in the earlier stages of dementia and her grown daughter. The daughter finds the mother in the garden, and the mother is quite distraught as she doesn't know how she got there or why she went there in the first place. It goes on from there.

I just watched it, and I think that if you have dementia, even this small sample will make you, um, cringe perhaps, but I think you will identify with the emotions portrayed by the character of the mother, such as fear, frustration and anger. If you are a caregiver, you will particularly identify with the daughter when she makes her soliloquy at the close of this exert, especially if one of your parents has dementia.

The web page where you will find the video lists the schedule for upcoming performances of the play. I sure hope I can catch it during one of my trips to Toronto!

So take a look, and please comment!

Stepping into Reality

2009-02-18T19:35:00.000-08:00

I worked with Linda Radke of Five Star Publications to publish my book, and as part of the marketing program, she has obtained written reviews from various people (thanks Linda!!!).

One of my favourite reviews comes from the author and actor Lisa Cerasoli, who wrote On the Brink of Bliss and Insanity. She wrote that "the most invaluable tip as the caretaker of a loved one with dementia was 'let go of your reality... and step into theirs.' Thank you for my new mantra."

I wrote this tip in the "How to" section at the front of my book ElderCareRead Life Scenes 1. It had to do with not trying to direct conversation too much, not pushing nor pulling the person with dementia into participating in your conversation, your discussion, your train of thought, your reality. You have to let go of your reality, and step into theirs. Doing so allows you to let go of your frustration and just "go with the flow." Enjoy the moment!

I learned this way of being with my mother while she was in the later stages of vascular dementia. She was in the memory care unit of her nursing home, and was surrounded by people with Alzheimer's and other types of dementia. My mother wasn't terribly talkative... in fact, my mantra with her should have been "don't take it personally." Perhaps I will make that my second rule. When she didn't remember who I was (but remembered my two sisters including the one who had passed away two years before!) I didn't get angry, frustrated or sad. Instead, we played a game of "place this person in the family." Eventually, by talking about how many children she had, and remembering the names of the first two, she could place me as "her baby" and remember my name. I'll never forget the look of joy and acknowledgment that would light up her face when she remembered who I was!!!

When I wasn't playing "who am I" with my mother, I would get to talk to other residents. I learned to step out of my reality first with the lovely lady who was firmly routed in World War II. Hey, I was cool with that. I got to learn about her job (something to do with translating messages), her parents (whom she had displaced somewhere) and her husband. I got a glimpse into England during the war and into her life. If I had fought her on what year it was or told her that her parents were likely dead seeing as she was well into her 80s, all that would have resulted would have been two angry people. Stepping into their reality is so much more comfortable and fun than trying to pull them into ours.

Many memory care units have adopted this strategy. My favourite is the nursery, where people can go and pick up a "baby" (a doll) to take care of, feed, dress, cuddle and carry around to show off to their friends.

Now, note that I am talking about people in the later stages of dementia. My friend Richard Taylor is adamant that people with early onset or the early and moderate stages of Alzheimer's are fighting to stay in the present. They don't necessarily want to be looking through memory books or reviewing their past or reading magazines about olden days. I guess for people who don't want to live in the past, the best strategy IS to keep bringing them into your reality, until it just becomes too agonizing.

You'll know when it's time to swap realities...

Happy Valentine's Day

2009-02-13T08:07:00.000-08:00

When my mother was alive, I would send her chocolates or stuffed animals, ordered from an online service and delivered to her home. I knew that she might not remember right away who this person was who was sending her these things, and that the day after, she would have to be reminded that there were chocolates in her drawer that she could eat, but I was hoping that in the moment that she received them, she would find pleasure and she would be happy and surprised, even for that fleeting moment.

This Valentine's Day I am reminded of how easy it is to forget that, when our loved one with dementia loses their memories of those closest to them, their heart remains. It is their heart that goes on and on (to quote a song from Titanic!), and their heart is the key for us to connect with them. As long as their heart beats, as long as their thoughts and emotions are driven by their heart, they are humans with a lot of love to give, and that is our golden opportunity to connect. As Phil Bolsta recently said in his wonderful blog on the Alzheimer's Association web site (http://actionalz.blogspot.com/2009/02/transcending-life-as-flowerpot.html), "With a hug, a kiss on the cheek and a shoulder rub, I can still communicate with him through the language of the heart." I know that when I used to communicate with my mother this way, I always got a hug back, and man-oh-man, I miss those hugs now.

On this Valentine's Day, practice speaking the "language of the heart!"

If you live in Arizona or Southern Nevada...

2009-02-11T12:03:00.000-08:00

And if you are a person with dementia, a caregiver (current and past), a professional who serves people with dementia, or just a concerned member of the community, please take the time to fill out the following survey. It will only take a few minutes.

The Southwest Chapter of the Alzheimer's Association is conducting a program and service evaluation as part of their strategic planning process. With an aging baby boomer population and more and more people developing Alzheimer's and other forms of dementia, the Alzheimer's Association Southwest Chapter is preparing for the increased need for their services and programs.

You can help by providing your input and suggestions. The programs you want to see developed won't get developed unless you have a hand in forming them!

Here's the link:

http://www.surveymonkey.com/s.aspx?sm=iiewfQGJLjW_2fEZrr0GPirg_3d_3d

Experiences that let me know I'm on the right track

2009-02-10T11:41:00.000-08:00

Like most people who are out there trying to sell their books, I have up days and down days. My up days result not so much from actual sales, but from hearing about people's experiences with the book.

When I was at the Changing Melodies conference in Toronto in November 2008, I was fortunate enough to be able to put my ElderCareRead Life Scenes 1 book out on a table to sell. At one point I left the table to grab a coffee, and when I returned, a lady and her daughter immediately came over to me to purchase a book. They said that they had come past the table a short while ago, with their father/grandfather in tow. This gentleman had advanced Alzheimer's disease -- and it speaks to the spirit and uniqueness of the conference that he was in attendance and getting something out of it (note to Alzheimer's Association!).

When he saw my book, he picked it up and, flipping through the pages, stopped at the photo of the couple dancing. After gazing at it for a short time, he started talking to his daughter about how he remembered dancing with his wife. Tearfully, the daughter told me that her father had never talked about his wife before (not sure if this was a first wife or a wife who had died some time ago) and the last time they could possibly have danced was in the 1950s. She was grateful to me for providing a vehicle for her father to talk about these precious memories and for bringing these memories into the present.

It's these kinds of stories that keep me going...

Long Distance Caregiving

2009-02-09T09:08:00.000-08:00

As a one-time long distance caregiver to my mother, this article resonated with me:

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/159

It's called "How out-of-towners stay in the loop" and while it's directed at caregivers of people with cancer, there are a lot of good ideas for caregivers of people with dementia. It might even serve to validate how you as a long distance caregiver feels, and make you feel better about some of your decisions and actions!

The Statistics Bear Repeating

2009-02-08T14:12:00.000-08:00

Whether or not you are involved in the world of Alzheimer's and other dementias on a daily basis, it's always shocking to hear the statistics on how many people have Alzheimer's and what the cost is to our society. So, if you find yourself needing a jolt to get you going and keep you motivated, the statistics are worth reading again. Here they are:

More than 4.5 million Americans have Alzheimer's disease.

This number is projected to increase to 13.2 million by 2050.

Someone develops Alzheimer's disease every 72 seconds.

If you are over the age of 85, your chances of developing Alzheimer's is 50%.

The cost of caring for someone with dementia is more than $47,000 per year.

Economic cost associated with Alzheimer's disease is close to $100 billion annually.

The incidence per 100,000 for someone with dementia is 268. There are 670,000 new cases of dementia per year in the USA alone. Of these, 470,000 are Alzheimer's disease.

There are 17,176 nursing homes in the USA with more than 1.5 million residents.

25% of people over the age of 85 live in nursing homes. Of these, more than 75% have a mental disorder.

What I would do if I could do it again

2009-02-07T19:21:00.000-08:00

I was at the Caregiver's Conference of the Phoenix Alzheimer's Association conference this week. I met a number of interesting people who, of course, got into the field of Alzheimer's and dementia because they had a family member who has or had a form of dementia. More often than not it was a mother who had the disease.
Those who had lost someone to dementia reflected that if they knew now what they had known then, things would have been different. What would have been different? The place where their loved one lived. The type of caregiving. The type of activities and the amount of stimulation given. The rehabilitation.
I would have done all of these things differently with my mother, and after attending a session on nutrition for people with Alzheimer's, I realized that I would have done the food differently too. The food at my mother's home was not terribly appealing or nutritious, nor was it the right consistency for someone with moderate to advanced dementia. There weren't enough snacks, and the snacks weren't accessible for the times when people were hungry. Someone with Alzheimer's may wish to graze all day rather than eat three square meals. People with advanced dementia just need to eat. They need the caloric intake so that they don't lose weight. This means that nutrition can go out the window -- bring on the ice cream, pudding, Twinkies and juice! I realize now that when my mother stopped eating, she probably could have been tempted by ice cream at any time of the day.
Nursing homes have to realize that we rely on them to know best. Families do their own research and if we learn a better way, it means we have to take on the nursing home staff and battle with them to make them see our way. We usually have to do battle on medications, safety and activities. We assume that the homes know what they are supposed to be feeding their residents, and while we did do battle with them on food issues fairly frequently, we figured that they were trying to keep up on the best nutrition for their residents. Now, in retrospect, I guess we should have been bringing in sweeter, softer and higher caloric intake foods to supplement whatever she wouldn't and couldn't eat in the home's dining room.
We families depend on our nursing home staff to stay on the forefront of the latest knowledge of how to help our loved ones with dementia to live their best life. Some homes do a great job of this, and some do not. It's time for everyone to step up.

Clearing up confusion about the difference between dementia and Alzheimer's

2009-02-05T17:34:00.000-08:00

I just got back from the first day of the Caregivers Conference, put on by the Southwest Chapter of the Alzheimer's Association. One of the best presentations that I heard helped to clear up the confusion between the terms "dementia" and "Alzheimer's." Many people think that these are separate diseases, including some doctors. However, dementia is the umbrella term for disease that involve cognitive impairment, while Alzheimer's disease is one type of dementia. There are many other types of dementia, including vascular dementia, Lewy Body, and many many others. In fact, it was interesting that one of the presenter's slides listed Alzheimer's as "Alzheimer's Dementia," which could have been a slip up, but in fact, is much closer to the truth!