Learning From People With Dementia

first_imgby, Kavan Peterson, Editor, ChangingAging.orgTweetShareShareEmail0 SharesWhat I love about blogging is the ability to present an idea or raise a question and almost immediately receive feedback from people who are smarter/more experienced than you are. I’m amazed by the response to my blog post Alzheimer’s Disease Has a Brand Problem. I received some valid criticism, some valued praise, and most importantly, some new insights. Here’s a sample of the best comments:Al PowerI agree that we need a more positive message, but “hope” is a tricky thing. The way hope is usually presented with Alzheimer’s is that “a cure is just around the corner, of only we funnel a few more dollars into drug research”. But close scrutiny of the mechanisms of dementia and its association with aging of the brain and vascular system suggest that this is false hope at best.More important is to highlight the potential for millions of people with dementia to live positive, engaged and meaningful lives, when we better understand how to support them and enhance their well-being. Will more effective treatments be forthcoming down the road? I believe so. But I don’t believe there is a magic bullet. Unless we go “Logan’s Run” and start killing everyone off at 30, dementia is with us to stay. The big question is, how are we going to help those who live with us continue to thrive, as we do with any other chronic illness or disability?Michelle J.I think that legislators and their staff in particular need to hear from more individuals who are living with Alzheimer’s. One of the challenges of this disease (compared to AIDS, cancer, heart disease, etc.) is that beyond the early stage of the disease, it becomes very difficult for people with Alzheimer’s to speak out about their experience. The most powerful meetings I’ve had with legislative staff have been those meetings were our group included a person with Alzheimer’s, who could share his/her experience. Jim RogersSorry, Kavan. I couldn’t disagree with you more. This isn’t about “branding.” It’s about raising public awareness — which is exactly what you’re seeing finally begin to happen. Organizations like the Alzheimer’s Association, the Geoffrey Beene Foundation, Women Against Alzheimer’s, and others are now fully engaged in well-orchestrated campaigns aimed at informing/educating the public — as well as policymakers — about the looming crisis posed by this horrific disease. Indeed, even the media have begun focusing more on the issue. HBO’s critically acclaimed documentary “The Alzheimer’s Project” is an excellent recent example of how the entertainment industry is responding to the issue. And lest we forget, the 2008 Oscars included two Best Actress nominations for performances in movies dealing with Alzheimer’s disease and dementia. Given these and other recent treatments of the topic, I suspect we’ll see a growing number media outlets attracted to stories of a similar nature. (I wouldn’t be at all surprised to see some filmmaker soon undertake a project focusing on Glen Campbell and his battle with Alzheimer’s.) No, Kavan, this isn’t about branding. This is about letting people know the awful truth about this disease — that, as things now stand, if you live long enough, your chances of developing Alzheimer’s or some other form of dementia are greater than 70 percent.Related PostsTrust at StakeThe full text of Eilon Caspi’s recent journal article “Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance?” is now available for free thanks to an anonymous donor seeking to raise awareness of the gross imbalance of effort and funding between the Association’s dual…Latest Alzheimer’s From The Inside Out NewsletterThe latest edition of Richard Taylor’s newsletter Alzheimer’s From the Inside Out was published today. If you want a deeper understanding of dementia, and the people who live with it, I highly recommend you become a subscriber by clicking here. Here’s what Richard has to say about the latest research…Best Blogs and Web Resources Focused on Alzheimer’sDr. Al Power (ChangingAging’s resident dementia expert) and I have been trying to put together a list of the best blogs and web resources focused on Alzheimer’s and dementia. We want to make sure we connect with those sites on the ChangingAging Blogstream when it goes live. Today I want to…TweetShareShareEmail0 SharesTags: Aging al power Alzheimers Dementialast_img

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