Whether we view Alzheimer’s as a disease, or as part of aging, most of us know from personal experience that the way we deal with it is terribly inadequate. In the past three posts, I’ve written about the growing recognition that Alzheimer’s isn’t a single disease, and the controversy about whether we should spend our limited resources on trying to find a “cure.”
Maybe if we give up our fantasies of a single “cure” for Alzheimer’s, we can start talking about better ways to view and treat dementia. These discussions have already begun in labs, at conferences, on email lists, and in homes around the world. While preliminary, they provide us with a glimpse of how Alzheimer’s care might look in the future.
Dr. Peter Whitehouse’s work is an example. Earlier in his career, he focused on drug development. Now he’s more interested in prevention and in intervention studies aimed at improving quality of life for dementia sufferers.
“We need to re-evaluate what’s important,” he says. “Regardless of cure, care needs more attention. Trying to find a cure is part of caring, but there’s an imbalance. We have a great obligation to think clearly about the condition, then do things to improve it. We need to think about ethical considerations – for example, there are still children whose brains are being damaged by lead. Addressing this problem is important for future generations. And instead of focusing on degeneration, we should be focusing on renaissance and legacy.”
Dr. Whitehouse’s recent work includes research on using electronic aids for reminiscence therapies (LifeBook) and archiving individual stories of people’s experiences with disease (including dementia) and medical treatment (StoryBank). His main intervention studies will be at The Intergenerational School, a Cleveland public school serving learners of all ages. He founded the school with his wife Catherine. “The IG school represents one way of pulling it all together,” he says. “Purpose, a sense of community, remaining cognitively active, leaving a legacy, being engaged and valued - these things are much more important to quality of life.”
In labs and at conferences, other scientists are discussing new approaches to Alzheimer’s research, such as more accurate “sub-typing” for identifying different types of dementia, and focusing on investigating potential causes of dementia other than beta amyloid. I’ll write more about this in another post.
And within DASN, members are talking about how to improve care:
- “I think the 'person-centered' model is the ideal for both the care partner and the person with dementia. Each of us has different needs, so no care plan would suit even the majority of folks touched by this disease.” (Shirl Garnett, western Australia, diagnosed with early onset dementia at 59)
Shirl Garnett
- “The mind-body-spirit approaches developed by new age physicians to address those other diseases must be brought to bear on AD. Further, I believe that new era medicine - consciousness and healing - could inform the research being done in the AD research centers and private laboratories.” (Jay Smith, California, diagnosed with early onset Alzheimer’s)
- “Services in the form of support for caregivers and those of us with dementia can often be provided in part by volunteers. I am convinced that there are many more volunteers who are qualified and would contribute if given the opportunity.” (Charley Schneider, Missouri, diagnosed with early onset Alzheimer’s)
- “I think that the key to finding a better medication for treatment and possibly a cure lies in the minds (no pun intended)of those that ARE diagnosed in their 30's, 40's and 50's. If they were open to allowing us to be a part of research in clinical trials I personally think that this would speed up the process for their goal of a cure. So, so many of us work so diligently with great urgency to make this happen as we don’t have the time that the associations and researchers do to plan this all out as our time is running out. Why not focus on those under 50? They might be surprised how much money is saved in research if they would just broaden their horizons so to speak.” (Tracy Mobley, Missouri, diagnosed with early onset Alzheimer’s disease at the age of 38)
Tracy Mobley
- “What makes the best sense of all is empowering people with dementia to care for themselves as much as possible and for as long as possible. People with dementia absolutely can learn some things far into the disease. I truly believe that people with early dementia can be taught to better understand and manage their own disease and behaviors. I further believe that a society which allows people with dementia to stay involved in their chosen activities also prolongs life and emotional health.” (Carole Mulliken, Missouri, diagnosed with vascular dementia)
Dr. Whitehouse sees hope in this kind of open-minded discussion. “If we can think through Alzheimer’s in a deeper way, will have insights into how the brain works. Underneath Alzheimer’s is a re-thinking about what it means to be human, and science’s role in society.”
Wow! I'm flabbergasted! Excellent series! Much to think about! Thank you, thank you, thank you, Mona!
Posted by: Gail Rae Hudson | December 16, 2006 at 03:25 PM
Alzheimer's is compounded by inaccurate information, insufficient funding and incompetent care. It's the perfect breeding ground for silver bullet thinking. THIS will solve the problem. THIS will make it all go away. THIS is IT! And who better to buy in than those who are desperate for answers.
We are going to be dealing with the mess of Alzheimer's for a long long time. We can describe it up one side and down the other but until someone figures out how the disease actually functions, we're shoveling against the tide. Until someone demands accurate up-to-date information, our nation will continue to be fed a watered down pablum of Alzheimer's care costs! And until someone confronts the nursing home industry on its awful record, defying corporate greed, we will continue to lament the poor pityful state of Alzheimer's disease and the families that suffer through it.
One hundred years ago, Alzheimer's was first "discovered". We still can't even get an accurate diagnosis! How many kinds of Alzheimer's are we talking about? How many people have the disease? Four million? Impossible. The number MUST be higher than that. The population is aging at a faster rate than the information is updated on major commercial Alzheimer's websites. And we tolerate that!
Nothing changes if nothing changes. We can write about it all we want but sometimes words are just that - so much ink on paper. And we get what we get - a pat on the head. There must be something missing from the national dialog. I think it might be the truth. And the anger that truth releases.
Your blog is an attempt to find truth. What tremendous effort it must have taken on your part to bring together your latest series of posts. You are a virtual clearinghouse of current, intelligent thinking on the subject of Alzheimer's. Thank you from the bottom of my hear, the top of my mind and the corner of my eye.
Patty
Posted by: Patty Doherty | December 19, 2006 at 10:13 AM
Wow, this is so thought provoking! You're right that we don't hear the kinds of things said on your blog in other places. I'm really grateful that you put this information out there.
Posted by: Karma | January 02, 2007 at 11:17 PM