Forget Memory

In the conclusion of Forget Memory, I dream of a time when advocates with/for dementia create a movement like “Act-Up” that insists on humane treatment and financing of care and research.  This past Sunday, a New York Times article pointed out a similar movement starting to happen with mental illness.  Can my dream be far behind?

Judith-Kate Friedman came through Milwaukee in April to give a workshop on Songwriting Works at Luther Manor (UWM’s Center on Age & Community sponsored, along with the Southeastern Wisconsin Chapter of the Alzheimer’s Association, and the Wisconsin Conservatory of Music).  Friedman works with groups of people to catalyze the creation of an original song.  She works with all walks of people - including people with dementia.

WUWM’s Lake Effect came out to record the session, and created a lovely story about it.  You can listen to it online by clicking here.

I’m always trolling for news about creative expression and dementia, and came across this one today - Creativity Not Slowed by Dementia in the San Mateo Times (CA).

Enjoy.

What an incredible conference.  The New York City Chapter of the Alzheimer’s Association held its annual Early Stage Conference on May 1st at the Roosevelt Hotel in NYC.  350 people - a blend of professionals in dementia care, family care partners and people in the early stages of dementia–were guided by a stable of clear and calm volunteers up to the grand ballroom and break out rooms.

I mainly talked about StoryCorps’ Memory Loss Initiative, sharing clips of that project, and results of our Center’s evaluation of it in the first year.   I see this conference as the wave of things to come for the field.  Usually, conferences in dementia care leave a sticky feeling on my tongue - that I’m talking about THEM.  A conference in which people with dementia sit laughing and learning among care partners - professional and informal - takes that uneasy stickiness away.  WE are in this together.  WE aren’t so different.  WE can learn from each other.  Thanks to the NYC chapter for organizing such an incredible day.

I had a conversation yesterday with a friend who had just talked with some of the fascinating folks doing person-centered dementia care in Australia.  There is lots of work happening internationally that fell out of the scope of Forget Memory (which is United States-centric), and I start this series of entries to draw people’s attention to some of it.

First I’ll point to my collaborator on the Arts and Dementia Care Resource Guide, the incredibly gentle-spirited John Killick and his partner Kate Allen, who have a website/consulting group called Dementia Positive. John was a teacher for 30 years.  In 1989 he began a journey that has led him deep into community-based arts in communities of need - prisons, and now, predominantly, health care settings for older adults.  He began by writing poetry with people with dementia.  His adventure in writing coincided with the groundbreaking work of Tom Kitwood in England, and Kitwood’s ideas are manifest in John’s elegant, respectful fostering and sharing of voices of people with dementia.  Kate is a clinical psychologist with deep community-based experience, whose specialty is working in communication with people with dementia.

The site includes publications (books on poetry, communication, and  the arts in general), Allen and Killick’s bios, and bios of fellow travelers.

John and I had the funny experience of collaborating on the Arts and Dementia Care Resource Guide strictly via email.  We finally met at the Society for Arts in Dementia Care’s conference on Creative Expression, Communication, and Dementia in Vancouver in May of 2006.  To sit and tumble into discussions of his work over the pond as we ate box lunches with a view of mountains and water was the highlight of the conference for me.

I’ve noticed a ton of traffic searching for info on film and forgetting.  I am covering this pretty extensively in the book, so I thought I’d share some of the types/lists of films.

There are films that directly address dementia and aging (Iris, Away From Her, the Notebook, Aurora Borealis, Diminished Capacity etc.).  There are films that address forgetting through amnesia or dubious scientific manipulation (Eternal Sunshine of the Spotless Mind, the Bourne trilogy, the Majestic, 50 First Dates etc.)  There are films that hover somewhere in between - namely Finding Nemo - one of my all time favorites.  The documentaries are in their own category (Pop, Complaints of a Dutiful Daughter, Memory for Max Ida and Clare, etc.)

In all, I find two waves of films - post WWII, and the last 20 years.  This last wave has been HUGE - spurred on by (I believe) lots of anxiety around the turning of the century, technological “advances”, and the growing awareness of dementia.

I think all the films dealing with forgetting tap into cultural dis-ease with self/memory, whether its Iris, the Notebook, or the Bourne series.  It doesn’t have to have old people in it to address this theme - sometimes the best lessons about how a culture should approach cognitive disability on the scale of alzheimer’s and dementia can come from a film about fish.

Just as I’m putting the finishing touches on the book chapter about the Boston Legal character Denny Crane, the ABC series shows another episode that wrestles with Alzheimer’s.  The chapter on Denny Crane in the book focuses on the incredible first season back in 2004 when the whole show seemed predicated on Denny being convinced he had what he referred to as “Mad Cow” disease.

The theme pops up again every now and then, but the series seems leery to address it as fully as they did in that first season.  On April 15th, Shirley Schmidt tries to end the suffering of her father who has been in a long battle with Alzheimer’s.  The season summaries show a thumbnail sketch of the plot.  The unofficial show site www.boston-legal.org offers lots of helpful info as well.

According to blogger Amy Archerd, the episode recently won special recognition (The Abe Burrows Entertainment Award) from  the Alzheimer’s Association at their annual “Night at Sardi’s” gala.

I picked up the book at Kramer’s (another favorite independent bookstore) in D.C. when I was there for the American Society on Aging in March. I started reading in a cramped Thai restaurant (sipping my favorite soup) and finished on the plane to Florida a week later. But the characters are so inviting (quirky as they are) and the story so playful (even if the topic is edged with sorrow), that it felt like I read it in one sitting. I was immersed in Block’s world.

There are autobiographies by people with early-onset, and many, many memoirs by caregivers. Some among these are very important - they let us know the hearts and minds of people going through the disease, and they chart out the experience of it in detail much greater than the medical diagnosis (which was really all we had for a long time).

Fiction, especially good fiction, about this experience can do something a little different - which is transform the experience of dementia/Alzheimer’s.

In the Story of Forgetting, which was featured on Weekend Edition on NPR over the weekend, Block does this beautifully. He wrestles with the core questions. Why would parents who know there is a chance of giving this to a child, have children? Why does this exist? Does it have any meaning at all? I can’t say that there are clear cut answers to these questions in the book - but there is a consistent, underlying dignity in all the characters, from the women who became carriers of the disease (in Block’s telling), to the ancient man with humpback who struggles to stay in his house so that it might be there for his wandering daughter to return to, to the young man who inherits not just the likelihood of disease, but the 1,000 pound, existential questions that come with his mother’s diagnosis and his father’s depression. There is love, goodness, and even whimsy in the darkest moments in Block’s world(s) - and that more than answered the Why for me.

My new motto for the field is that we need to raise awareness without raising stigma. And this tender rendering does just that. It is PACKED with science and realistic portrayals of the experience. And hope for meaningful connection in the moment.

I’m told by Don Moyer of Still Alice, another fictionalized portrait of early on-set - and I’ve ordered it and look forward to sharing it here with you soon.

I went to update my list of films about dementia in the book (my new deadline for final copy is May 1st!), and I found out that Diminished Capacity, the film about memory loss and dementia (with Matthew Broderick and Alan Alda) that played at Sundance this year, has been picked up by IFC.  Looks like it’ll open this summer (their website says July 4th).

There’s a lot of electronic activity going on about “video proof” of a “miracle cure” for Alzheimer’s - the anti-arthritis medication Enbrel.  I think it’s important to listen to all the voices out there on this one. The impulse is to fly into action and proclaim a cure. But there’s a lot of science that has to wrap itself around this first.  Peter Whitehouse calls the reporting on Enbrel “premature, irresponsible hype.” Remember the “vaccine” caused some serious brain swelling (people died) and then scientists found that even with the clearing up of plaques, that function didn’t improve.  One of the headlines describes this treatment as an “awakening”, drawing an association with the film/book Awakenings - in which a pill treatment “woke up” people who were deeply withdrawn into disease.  But the treatment did not last.

I suggest using all our media literacy skills here - look at how the story is being told, who is telling it, and what information isn’t available.

Here are just a few links to the discussion on Enbrel.

YouTube video #1

YouTube video/interview with daughter

Peter Whitehouse’s blog entry on Enbrel

newspaper article from Daily Mail

article from Telegraph.co.uk

article from The Independent