Diminished Capacity, with Alan Alda and Matthew Broderick playing uncle and nephew (respectively) with matching memory problems, is in limited release.  The NYT’s was lukewarm…I’ll write my own review after the film makes its way to Milwaukee…

I would love to read a good history of pharmaceuticals in this country. Just when did we become convinced that it is cheaper to medicate than to provide actual care or change behaviors? How is it that we arrive at the numbers that tell us this is so? And why do we believe them?

There’s a great article in today’s NYT’s Science section about the over-prescribing of anti-psychotic medications for people with dementia. The article mentions a tripling of the sales of the drugs, up to $12 billion in sales from 4 billion in 2000.  Sometimes, the anti-psychotics are the only thing that can relieve tremendous suffering.  But too often, they are prescribed to control behaviors that might be changed with improvements in care.  The author points out that just paying attention to people with dementia can improve their quality of life and behaviors.  Yet the suggestion is that improving care practices is too expensive. Would it really be more than 12 billion?

The MoMA Alzheimer’s Project, which opens access to this magnificent cultural treasure to people with dementia and their families, now has a guide for museums interested in replicating their program.

You can download the Guide for free, thanks to support from the MetLife Foundation.

This marks a really exciting shift in the field. Rather than create a parallel universe of support for people with dementia and their families, we are now starting to open up real life to them. Art museums and cultural institutions are just the beginning of the mainstreaming of dementia. May it happen quickly and well.

Looks like PBS will be rebroadcasting The Forgetting this summer.

I have mixed feelings.

On the one hand, the film certainly has been a powerful tool for raising awareness. The local feeds afterward, which feature more nuanced discussions of the experience of dementia, are very informative and moving.

But the film itself is pure tragic narrative. I almost felt like I was suffocating while I watched it (several times) as research for the book. What is missing from The Forgetting (television version) is any sort of sense of the resiliency of people with dementia. There is no meaning in their lives. There is no humor. No joy. This film chooses to tell the story of the tragedy of dementia and the exciting scientific race for answers.

The book (by David Shenk) is a skillful and inviting weaving of the complexities of Alzheimer’s. The website is equally complex and inviting. But the film scares me. And I fear it scares others more than it inspires them to respect and engage people with dementia - and in so doing, to be part of the social cure.

The Forgetting Rebroadcast and Panel Discussion on PBS

The critically acclaimed documentary, The Forgetting: A portrait of Alzheimer’s, will be rebroadcast this summer on PBS stations nationwide. Immediately after the 90-minute documentary, stations will air a 30-minute panel discussion about the disease moderated by David Hyde Pierce featuring a number of researchers with whom the Alzheimer’s Association works closely. The Association is working with the producers of the program to provide Chapters with tools you can use if you would like to leverage this opportunity to generate awareness of the disease and the Association. This will likely be ready the week of June 23. The program will air in most markets on Sunday, August 3 at 9PM ET. Check your local listings for exact airing times and dates in your market.

Joe Shapiro did a lovely piece on NPR about The Intergenerational School (TIS) in Cleveland.  The school brings together young (K- and old, as well as people with disabilities, including Alzheimer’s.  Thanks largely to Civic Ventures, the idea of older adults becoming a large, mobilized volunteer corps for this country has started to really take shape.  But the radical notion at TIS is that people with dementia can experience the rewards of volunteering as well.

When I was first pitching Forget Memory to agents, a very successful agent whom I admire a great deal told me that it was a great idea, but that unfortunately, in her experience, “dementia doesn’t sell.”  I just got word today that Lisa Genova’s book Still Alice, which she initially self-published, has been picked up by Simon and Schuster for a hefty six figures.  It’ll be out in early 09.

There are three books out there right now on midlife memory loss (Carved in Sand, Can’t Remember What I Forgot, and Where Did I Leave My Glasses?) and an elegantly written fictional account of early on-set AD, The Story of Forgetting.  I’m sure the film rights for The Story of Forgetting and Still Alice can’t be far behind, if they haven’t already been snapped up.

Dementia is starting to sell.   Perhaps this means that we are starting to break the threshold of being able to talk about dementia…and to live with it as human beings rather than be considered vegetables.

In the conclusion to Forget Memory, I imagine a day when people with dementia will engage in ACT-UP style activism.  In the way that ACT-UP shaped AIDS/HIV research and funding, dementia activists might be able to shape a research agenda for AD that includes care as well as cure. They might be able to drive us toward a long term care policy in this country.  Imagine that…

I saw an article today that shows the beginnings of this movement - the early stage dementia activists!  Richard Taylor is of course setting the course for this movement as well.

The NYT’s Science Section featured an interesting article today about how memory loss associated with aging might actually be recast as a widening of the attention/focus to better synthesize information rather than focus on details. This, the article tells us, is another way to define wisdom.

Might this also be true of other “losses” associated with age? Of mobility? Of vision? Of hearing? Of visual “sex” appeal? Those are rhetorical questions…

As the population ages, the marker of “normal” in memory loss will continue to shift. There are several books out now that address the worry over memory loss in all its manifestations - from seemingly benign to the significant losses in the dementia experience. The latest entry is coming out this month from Harmony Books, a division of Random House. Sue Halpern’s Can’t Remember What I Forgot: The Good News from the Frontlines of Memory Research is a personal journey through memory research. I’ll write more after I have a chance to read it, but for now, check out reviews and ordering info here.

I was sure that when I turned in the final copy of the book to the publisher on Tuesday, that it was already out of date.  I’d just given two talks at chapters of the Alzheimer’s Association, and the audiences really got what I was saying.  We can no longer raise awareness of Alzheimer’s with a message of fear alone.  Doing this only restigmatizes the amazing people who are living with this disease.

Then today, my husband sent me this article from Alternet, which does exactly that.  The moment when a parent doesn’t recognize you is indeed very painful.  But it is not the end of your relationship.  It might even, in some cases, as Deborah Hoffman showed us in Complaints of a Dutiful Daughter oh so long ago, be the beginning of something better.

The numbers are frightening.  They do feel overwhelming.  And we should do something.  But the experience of dementia can have meaning.  We can’t empty out the meaning of people’s lives in the hopes that it will raise awareness and dollars for research.