Follow Me to Mindset Memory Centre!

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?

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

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

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

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

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?

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:

1. Accelerated investment in all areas of dementia research.
2. Supporting informal caregivers through education and dollars.
3. Recognizing the importance of prevention and early intervention for dementia on the part of health care professionals and the general public.
4. Greater integration of care and increased use of accepted best practices in chronic disease prevention and management, community support and community care coordination.
5. 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.