Alzheimer's Association -- it's about the cure, but why?

The National Dinner -- heartrending and motivated.  I was fortunate to attend an amazing dinner last night in Washington as a guest of Philips. This looked like, but was no ordinary awards banquet. The National Alzheimer's Dinner, the organization's largest (and most well-attended, ever) Alzheimer's Association annual fundraising event, hosted by Meredith Vieria and with a parade of famous folk. These included Jane Seymour who has made a documentary about Alzheimer's sufferer Glen Campbell, Maria Shriver who produced The Alzheimer's Project on HBO, and Pat Summitt, the famed Tennessee coach who has early onset (beginning at age 58) Alzheimer's Disease, who was there with her son. Beyond those folk (!), the evening's ceremony included heart-stopping comments from individuals who currently have a diagnosis of Alzheimer's. But then the audience stood up in groups -- first to stand were individuals who have a current diagnosis, then those with a family member diagnosed with Alzheimer's, followed by those caregiving for someone with the disease, finally those with a family member who died as a result of Alzheimer's. Emotionally drained yet?

The fundraising goal -- a cure by 2025.  Often mentioned throughout were the 5.4 million, the current US number with Alzheimer's today that is expected to grow to 16 million by 2050.  Each of the leading fund raisers in attendance mentioned the National Plan to allocate funds to cure the disease, and many spoke of the goal of a cure by 2025. Interesting when you think that there are no treatments whatsoever to halt, prevent, or erase the effects of the disease today -- despite numerous times that hopes have been raised about this or that drug (generating billions of dollars in sales anyway, and still NOT off the market). Who are we kidding that in 13 years one can fund-raise the research investment towards a cure? Even the NIH does not believe that Alzheimer's can be prevented or cured. Meanwhile, every other week we learn of an avoidable risk factor so that we don't 'catch it'. Sedentary? smoking? obese? diabetes? fatty food? All are regularly highlighted in this or that news article based on new studies (there they go again!). Making your brain and body more fit (neuroplasticity anyone?) or you -- healthier or more cognitively fit (just forget about crossword puzzles). Despite NIH doubts, these panaceas are believed by some researchers to ward off symptoms. Or maybe alternative medicines will prevent cognitive decline.  Dizzy with poor choices yet?

Mitigating the impact of Alzheimer's day-to-day. With all the talk about cure, let us wonder about those who struggle day-to-day caring for individuals who are slowly declining (typically over a decade) from Alzheimer's. What do we have for them? Not so much. Adult day centers and related programs are implemented differently and to a varying degree within each state -- no standard licensing or level of care is required. Nor is their focus specifically on Alzheimer's -- they include those with disabilities or other disabling diseases. In fact, most individuals with Alzheimer's remain at home with their 15 million caregivers -- or their care is part of the $200 billion of US annual expenditure on the disease. Meanwhile, there is virtually no useful day-to-day technology to support caregiving other than location tracking technologies for those who have already wandered away. (Although the Alzheimer's Association, to their credit, has introduced a grants program looking for research that could surface some ideas.) Interestingly, music therapy, while hyped recently in the media, is not mainstream in group settings for Alzheimer's care -- the activities staff in dementia units rely on music as entertainment and distraction. Music therapists get it that Alzheimer's is only one of many targeted uses of music therapy. Exhausted yet?

As an investment, helping people live with Alzheimer's ranks below cure. No non-profit can do everything. But in my view, the Alzheimer's Association is focused in the wrong direction -- towards a cure that the drug companies desperately want (to replace the current useless drugs) and from which they stand to gain boatloads of profit -- if such drug existed. When I am told that the Alzheimer's Association focuses its research dollar on early stage research, come on, really, who could not be cynical? Put the money where the people are NOW, not where Pfizer wants to be as soon as it can identify the recipe.  Let's remember today's 5.4 million people -- think about the misery index of that number! To the Alzheimer's Association, please, just forget about research for a cure, and reduce your continuous effort to educate the public.  We're drained, dizzy and exhausted. Let's see the funds applied to do more -- equally across every state -- to help caregivers of people who have the disease now.

Thanks for your post, Laurie,

Thanks for your post, Laurie, and for your comment on the Forbes post. It is amazing how the fervor that surrounds our current research community has eclipsed good science, while simultaneously stigmatizing and marginalizing all who currently live with dementia.

The truth is that by changing our approach to care, we can do far more to improve the well-being of people living with dementia (and their care partners) than any pill that will likely come on the market in the near future.

But no one wants to fund care and education. Everyone is looking for the "magic bullet", and we're willing to spend billions to go down every blind alley that we come across in a search to "win the lottery" and find the next money-making pill.

While young people can get dementia, and some have a strong genetic predisposition, the majority of people have degenerative processes that are closely tied to aging of the body and brain. Unless we all plan to cash it in at age 30, we had better learn how to live with and support people who forget more than we think is normal.

Financial Burden of AZ Caregivers

Laurie,
Thank you for taking on the misconception that every disease can be "cured" if only we throw enough money into research and "promising therapies" Although, this approach may have worked well for Heart Disease and some forms of Cancer, the fact remains that such an approach to any problem is unsustainable--especially when we are in a global recession. Even in those cases where cancer, stroke, and HIV victims were miraculously saved, we never hear the rest of their story. Many family caregivers of these survivors were forced into emotional and financial bankruptcy in order to help their loved-ones survive. What organization is there to help them?
AZ Caregiver Support Groups, where they can be found, do provide quality emotional support, but that comes out of the compassion offered by members of the community--not the health care establishment. And while the financial establishment may be quick to offer equity loans or extend mortgages, don't ask for any handouts. I've seen families cannibalize their Retirement Savings, College Funds, and just about every other potential income stream just to cover the day-to-day care required to help their loved-ones survive until the promised cure was available. Your closing statement says it all, "We're drained, dizzy and exhausted. Let's see the funds applied to do more...to help caregivers of people who have the disease now."

thank you thank you thank

thank you thank you thank you, laurie. i have long been coming to this same conclusion and meet so much disaproval when i try to explain it.

Losing your mind!

Futility, Guilt, Sadness, Desperation, Frustration those are just some of the issues the caregivers have that try to make their loved ones comfortable. Depression, Confusion, Unhappiness, Reliance is the daily routine of loved ones coping with "losing their minds" ( a simple definition of the state we call Alzeimers Disease) The process is incredible; progressing from forgetfulness, to memory loss that makes them babble misdirected words tossed out of their mouths, to introverted souls recognizing few, and finally to coma-like glare - initially they KNOW it is happening to them, what a horrifying, scary stage this must be. Yes, antidepressants assist in calming their fright, but ultimately death or oblivion will be their only savior. During those waking hours we try to keep her busy, taking her mind off the present stress she experiences, but she still can think and what do you think that is about? She thinks about her lost independence, she thinks about dying, it is not worth living in this world she has arrived in. No medication that we know could have prevented, and none can reverse this thing they call Alzeimers, so we all do the best we can, coping until Sarah 93 dies - final relief. Until then we revel in her history and accomplishments and her tenacity and love of life past, we love this diminutive lady. Today society must try to make her as comfortable as possible, but investment must continue to try to prevent this condition for future generations through all means possible! But don't forget the caregivers, they need as much help coping with THEIR travails TODAY.

Can technology really help Alzheimer's caregivers?

Larry, I understand your caregiver's difficult journey.
My Mom had Alzheimer's too.
I witness other AD caregivers in my community and I'm appalled that no one has focused on helping caregivers with a broad range of issues that could be handled better with a tablet providing info, links, video connections between family members and support groups, et al,
There are many possibilities for empowering caregivers with such applications.
I know that an iPad will not lessen the pain, anger, grief caregivers experience.
And I know that nothing will replace the hugs and validation that a small local support group offers. However, a properly programmed tablet/smartphone can be a fountain of information, education, online support and guidance -available 24/7 when a caregiver feels overwhelmed and alone.
I wish you well on your caregivers path. As the saying goes, "caregiving is love made visible".

Tablet

I have been working on a cloud based tablet app for over a year.

Call me we can discuss!

Larry
1-877-300-1940 toll free

Alzheimer's - Focus on Research AND Caregiving

Laurie -

As always, your posts are insightful and provocative. I am an author, scientist, a former pharma executive, and quality expert turned health care advocate after caring for my mother who lived at home with Alzheimer's until the end. Adult day care, quality home care providers, programs like ARTZ, and community support are all necessary to enable loved ones to live well with the disease within their families and home communities. Too few families have sufficient resources to access decent help, stressing caregivers and increasing their health risks. Surely, we can do better, as you advocate. Yet efforts by MIT's McGovern Institute on brain research, CAF, the Cure Alzheimer's Fund, and the Family Cohort Study in Women's Health at Brigham and Women's hospital, to name a few, are among the many cutting edge research programs aimed at finding, and attenuating the devastating symptoms of this disease. Those efforts also need increased funding by the NIH and other sources to eventually find a cure, not by 2025, of course, but perhaps by the time my yet unborn grandchildren are elderly. With someone being diagnosed globally with dementia every four seconds, and nationally, every minute, we cannot afford to reduce our focus on research.

And not just Alzheimer's

What has also struck me as somewhat unbalanced with the Alzheimer's Association and related groups is their push to "rebrand" all forms of brain function impairment, memory loss and cognitive decline as Alzheimer's alone. Those with stroke-related, vascular and other dementias (e.g. Lewy body, Pick's disease)--even long term effects of TBIs--are unrecognized and lumped in with AZ even when the causes (and effects) are different, and treatment may be different. This is not only true for the general public, but doctors, insurers and other providers as well, and it is WRONG.

That being said, both improving quality of life for the affected person and caregivers is imperative. There may never be a cure, only mitigation and management, and that has to start happening now.

The brain

First let me say I look forward to your blog's. As an architect turned Aging in Place adviser for not only environmental considerations but financial as well.
I was a an aging work shop recently, the speaker a doctor , made some interesting comments.As we age apparently our brain shrinks and the mass (gray matter)of the brain acts as a form of insulator for nerves and cells to keep the brain functioning.
My mother was a big influence on me and as a child preached supplements and health. Her favorite phrase was " you have one body, take of it and it will take of you". She made me take all kinds of supplements and a few she said were particularly important. Like all kids I pay no attention to her but when I was in my 40's I remembered what she had taught me. I'm 85 now and working full time riding my bike and have a good quality of life. I am not a medical person but I think my mother 's teachings would be a good start to help people with Alzheimer's and other aging problems. The problem is people abuse their body until often times its too late.
Respectfully TM

Alzheimer Research

I agree with you that the explosion of Alzheimer’s related “news" dizzying today but inevitable. We have thousands of outlets created by those who profit from the disease to those it impacts at the most important level...within families, friends of those affected. Your blog one example of how the topic and discussion will carry far and wide with plenty of reaction. The majority of us will never be in a lab to find “THE CURE”. So whats the next best thing...news and opinion gathering from sources such as FB, blogs, Linkedin groups and others which we must weigh whose money is behind these messages. These emotional news items and campaigns grab our attention on not only Alzheimer's but all the other diseases. Wellness tips are the easiest no-brainers to get the spotlight, they make for endless conversation. Doesn’t Guilt and HOPE get us every time? The 21st C aging paradigm is all about uber quality of life which let’s be honest is bottom line “buying time”. Americans talk nonstop about the broken health care system, someday more light on the research end on how it is conducted and funded, will create enough outrage that you might find potentially, a recalibration of the cure clock. And you are right, caregiving, something so many of us do now or have done for loved ones, is where we can make a difference right now, and should be supported as a top priority.

Who wouldn't want a cure?

Very thought provoking piece ... and as usual Laurie, you hit the nail on the head.

Who wouldn't want a cure IF it was available? but currently it is not so the best option currently available is to apply best practice in all areas of supporting people and their families affected by this devastating disease ... whether that involves technology, activities, looking at their home environment, awareness raising for families about considering the changes they make, or dignified care and support from people.

Sadly for many reasons that is not happening as often as it should.

Posted by Cathy Stephenson on ConnectedHealth LinkedIn Group

Keep focus on research

Although I agree that there is a great need for support for current sufferers of Alzheimers and their families, I would hate see money diverted from research. It's true that quality research takes a lot of time, but ultimately, understanding the processes by which the disease begins and advances will result in prevention and treatments. Drug companies will not fund the basic research necessary to understand the disease; after it is better understood they will fund applied research to develop drugs. I think the current situation is very similar to cancer research 30 years ago. Remember when a diagnosis of cancer was a death sentence? Now about two-thirds of people who get cancer survive, thanks to research sponsored by the National Institutes of Health, the American Cancer Assn. and others. I think we've got to move in the same direction with Alzheimers.

Glenner Memory Care Centers

I'm on the board of the San Diego-based Glenner Memory Care Centers - a 30 year-old theraputic day program focused on dementia participants and their caregivers. The program was founded by Dr. George Glenner and his wife Joy. Dr. Glenner was an early Alzheimer's researcher and one of his interactions with a patient's caregiver drove him and Joy to create the centers.

Dr. Glenner's contributions to Alzheimer's research were foundational and significantly more research is needed, so I have to disagree with your premise that the Al Assn not focus on research. Research is imperative, even for current programs like Glenners, to improve their theraputic efficacy. Research is imperative to try to understand the root cause and progression of the disease. There is nowhere near enough research on this horrid disease.

Yes, I hope they can shoot for a cure by 2025. But to get there, our country needs to prioritize brains over boobs and dramatically increase the stupidly small reasearch funding allocated to Alzheimer's disease.

Perspectives

Compliments for your incisive Alzheimer's perspective. You raise many thought provoking points.

I am struck though with your dark streak. How the AZ funds use $ to a cure deserves review. Is legitimate gain achievable by reaching for a cure and caring for a disease simultaneously?

Technology products needed for AZ patients at home

We have a huge and growing national elder care crisis. We will all be dead before there is a cure for AZ. Bringing new drugs to market takes many, many years. Rich pharma companies can fund that research. AZ patients, elderly people and their family caregivers need practical technology tools to help with in-home care NOW. Money and effort is desperately needed to increase public awareness and fund technology product development.

Help for Caregivers

Last year I set up the Alzheimer's iCaregiver Foundation-a Utah nonprofit.
It's mission is to help Alzheimer's caregivers.
Once funded, I'll load an iPad and other tablets with helpful information and support features aimed at a broad range of Alz-caregiver's needs.
As funding permits, other technologies will be linked to tablets for long-distance caregivers.
I need startup funding for tablets, assistants, legal fees, field trials, operating expenses, et al.
Collaborators welcomed!
peterdurkson@gmail.com

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