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Archive for March, 2008

Young writers and artists turn to dementia

Posted in art, books, cultural phenom, tagged , , , , , on March 27, 2008 | 1 Comment »

I ran out to Harry Schwartz bookstore this morning (just as it opened) to pick up the new novel by Stefan Block, The Story of Forgetting, but it’s not due in the store until April 1st – no joke. Block’s book received a great review today in the NYT’s. Block’s novel playfully stretches into the past, future, and fantasy world simultaneously. He portrays a wayward Lord who spreads his damaged genes far and wide; a planet on which no one remembers anything; and a young man (Seth) whose mother leaves him all too early with early on-set.

Janet Maslin writes:

Eventually, in a novel that has a strong scientific component, Seth begins conducting research into the EOA-23 gene. He wants to understand not only what has happened to his mother but also how long a shadow her fate casts. He wants to know why, if his parents thought he was doomed to Alzheimer’s, they ever wanted Seth to be born.

Yet “The Story of Forgetting” is as true to the anguish of these questions as it is ablaze with love and vitality. In the end, without false optimism, Mr. Block taps into the life force that gives Seth a human, heart-wrenching answer.

“The Story of Forgetting” is a fresh, beguiling novel in what is sure to be the rapidly expanding genre of Alzheimer’s literature. As medicine alters life expectancy and genetic testing for the disease predicts destiny, these subjects invite new attention.

I can’t tell you how happy I am to have young people turning their creative energy toward the issues/concepts/realities of dementia. The press will undoubtedly ask WHY? like they did with Sarah Polley, when she selected Away From Her for her directoral debut at age 28.

But why wouldn’t young artists and writers be drawn toward the topics of love, family, and country in the time of forgetting? The legal, emotional, spiritual, economic, and physical ramifications of dementia in an aging population are enormous.

I can’t wait to read this book.

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New short animations on Alzheimer’s

Posted in books, cultural phenom, film, public education, tagged , , , on March 25, 2008 | 1 Comment »

There are 4 new short “pocket” films about Alzheimer’s disease out and available for open use. They are made by the team that brought us The Forgetting (the film and book). David Shenk, author of The Forgetting, wrote and directed the pieces. Naomi Boak (exec. producer of the Forgetting), Dr. Steven DeKosky, Dr. Rudolph Tanzi, and Geri Hall (PhD) advised.

The animations, by Jossie Malis, are simple, playful, inventive, and inviting. They encourage us to take in the frightening facts and figures in a way that a talking head, no matter how authoritative or famous, could ever do.

The 4 pocket films tackle separate issues, including: What is Alzheimer’s Disease?; An Urgent Epidemic; The Race to the Cure; and A Message for the Patients and their Families. I think they will be very important tools for relaying the urgent message that Alzheimer’s Disease research needs greater public funding.

Do not look for the films to share any good news about research in social/care and treatment of people and families moving through the disease. There are no voices of people with the disease. Their length denies the possibility of nuance. The segment on Patients (patients? haven’t we moved past that?) and Families does calmly affirm that there are support systems available for people to get diagnosis/medical treatment, support groups, and assistance in financial arrangements. These films will potentially shape the concept of Alzheimer’s for the YouTube generation.

I’m all for raising awareness. But as always, my hope is that we can find a way to do it without simultaneously raising stigma. I remain a huge fan of the book – which is filled with nuance and which makes an elegant, contextualized argument for the humanizing of those who struggle with dementia, and the complicated world of scientific research and the prioritization of cure over care.

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The Bad Daughter Gains Insight

Posted in books, tagged , , , , on March 20, 2008 | 2 Comments »

Lauren Kessler didn’t handle her mother’s dementia very well.  Haunted by how things might have been, the writer applied for a job as a care assistant in a nursing home near her home in Oregon.  Dancing with Rose: finding life in the land of alzheimer’s is the chronicle of her experiences and deepening understanding of how she went wrong with her own mother.

There are some lovely moments in the book.  Slowly, Kessler invites you to see patterns of residents, of staff, of the place itself.  By book’s end, when she takes us to the memorial services of some of the residents, we know them deeply and can feel the loss along with staff and family.

Kessler manages to go deep into the sorrow and loss – as a daughter and as someone doing the back breaking work of caring for 8 people with dementia at a time and getting minimum wage.  And yet she also puts words to the peace of deep human connection, with residents and fellow staff, that seems to addict her to the job that she intended to quit after three months.  She stayed for 6.

from page 224:

“Of course, the human animal in the absence of all these civilizing conditions may not be all that pleasant. And family members accustomed to the pre-disease person who revealed only what he or she wanted to reveal, whose ego was fully in charge of the show, might very well find the new person difficult, distressing, even heartbreaking. I know I did.  But there’s one thing about the folks at Maplewood, about people with Alzheimer’s in general: they are real, even the ones like Frances M. and Marianne, who are seriously deluded. They don’t have ulterior motives. They don’t manipulate. They don’t play games.  They just are. “

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Presentations (too much travel!)

Posted in Uncategorized on March 10, 2008 | 1 Comment »

I thought I’d share a bit about the presentations I’ll be making in the next couple months.

I just got back from giving a talk at Duke University’s Joseph and Kathleen Bryan Alzheimer’s Disease Research Center Conference. Storytelling is a strong tradition in the Carolinas, so I always enjoy giving talks about micro and macro storytelling (personal and institutional stories) at this exceedingly well-run conference.  They are good peeps.

I also just got back from an exhilarating day at the Museum of Modern Art. Their accessibility program coordinated a pre-conference workshop (as part of the Vanderbilt Arts in Healthcare symposium) on the arts and Alzheimer’s. Gay Hanna, Director of the National Center for Creative Aging talked about arts and aging in general. Meg Sewell gave an impassioned description of what we know, and what we need to know about Alzheimer’s. I followed with an overview of what is being done in the arts and Alzheimer’s. After that, the workshop shifted to the Meet Me At MoMA program. Francesca Rosenberg described the basics, but the heart and soul details were filled in by a panel of people who have gone through the program. Wives, sons, husbands, and people with dementia talked eloquently of the importance of opening the doors of one of our country’s most incredible collection of art to people with cognitive disabilities and their families. For people used to daily struggles with basic care and to overcome isolation and loneliness, this program offered a way to create special new memories of a shared experience of inspiration. It lifted them from their daily struggles. It gave them something to brag about. It honored them.

I’ll also be at ASA in March, speaking with Susan McFadden about the importance of story in dementia.

I’ll be talking at the Wisconsin Assisted Living Association’s conference on April 2nd in Madison (and visiting my parents!).
I’ll be addressing a similar topic at the New York City Chapter of the Alzheimer’s Association’s Early Memory Loss conference on May 2nd.

On May 4th, I’ll be back in Milwaukee at the State Conference for the Alzheimer’s Association, talking on Sunday evening about “Remembering What’s Important” in dementia care.

I think that’s it for now…Phew!

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