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?