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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.