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Archive for April, 2009

I first started reading Atul Gawande’s piece on solitary confinement in the New Yorker because 1) I pretty much love anything he writes, and 2) I love picking up the New Yorker and falling down rabbit holes of fascinating research and beautifully written tales.

But pretty quickly I realized this article has implications for long term care – where people are too often in a unique kind of solitary confinement, cut off from family, friends, personal belongings that might orient you, and the cognitive ability to connect past, present, and future.

“Human beings are social creatures,” Gawande begins the article.   “We are social not just in the trivial sense that we like company, and not just in the obvious sense that we each depend on others. We are social in a more elemental way: simply to exist as a normal human being requires interaction with other people.”  He proceeds to describe and connect 1950s experiments in raising baby monkeys much like people were encouraged to raise children at that time – like little independent adults.  What the scientists observed was that isolating people essentially did irreparable, psychological damage.

Gawande goes on to make the case that solitary confinement is a kind of torture – that human beings must have contact with other human beings to stay sane.  Without it, prisoners of war describe a slow loss of one’s mind.

And of course I think of the nursing homes.  And the time we were trying to test a research method by counting the number of interactions between staff and residents.   In a one hour window…we waited.  And waited.  And waited.  And could not legitamately code one earnest interaction.

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I just read a fascinating article called “Brain Gain” in the most recent New Yorker.  At first blush, one might not connect the stories of college students (or professional poker-players) taking “neuro-enhancers” like Adderall for a cognitive boost with concerns over memory loss.  But raising for bar for “normal” cognition creates greater pressure and worry over “normal” age-related memory loss.  Peter Whitehouse has been talking about this link for years, particularly in his critique of the pharmaceutical industry.  And Carol Elliott’s Better than Well makes a similar point – that we find ourselves where people feel cheated if they are just “normal.”

“Brain Gain” author Margaret Talbot makes an explicit link to aging and memory function – deep in the article she mentions a 30-year old man who takes neuro-enhancers because he worried “he ‘didn’t have the mental energy, the endurance, the–I don’t know what to properly call this–the sponginess that I seem to recall having when I was younger.’”

He later makes the link directly when he talks about his wife, who is 9 years younger – “‘She’s twenty-one, and I want to stay young and vigorous and don’t want to be a burden on her later in life.’ He didn’t worry about visible signs of aging, but he wanted to keep his mind nimble and healthy for as long as possible.’” (41)

Will we soon all be taking Adderall?  Will this become such a universally accepted right (to be alert and cognitively focused) that neuro-enhancers will go over-the-counter?  Their common use in a generation defined with the label ADHD might point to a new normal of enhanced cognitive expectations just when the boomers head into normal, age-related memory loss.

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Saw an interesting article today based on a study from NC State.   Dr Tom Hess found that older adults performed worse on memory tests if negative stereotypes about aging were activated.   Stigma and fear over how one is being perceived really do make a difference…

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I’m seeing lots of traffic of people looking for who sings the song on the trailer to the HBO series on Alzheimer’s.  It’s Gary Jules.  Here’s a youtube clip.

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I was in Boston this week for a couple days of meetings, including one with a lovely fellow named Alan O’Hare who runs the “Life Story Theatre: Celebrating the Mysteries and Miracles of Life.”

life story theatre

life story theatre

Based in and around the Boston area, Mr. O’Hare draws on the tradition of the Schenachie, Irish storytellers.   He has created several plays inspired by the stories of elders living in care facilities, or elders he comes to know and befriend.  Blending music, dance, and storytelling, Mr. O’hare presents the plays to inspire others to explore the stories of those around them.  We’ll keep in touch and possibly do a joint training in the Boston area…stay tuned.

Alan also told me about a great project he did with people who lived in a senior housing facility, where the divisions between the young people with disabilities and the elders were quite sharp.  He brought together people from both groups and found common ground through sharing stories of oppression.   He was quite moved by the experience, and found that sharing the performance was inspiring to others as well.

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Today’s NYT’s article on the memory research at SUNY Downstate Medical Center in Brooklyn is the stuff of sci-fi-esque movies like Eternal Sunshine of the Spotless Mind.  Looks like they can block some unpleasant memories in mice – like the memory of a particularly disgusting taste (wonder how they simulated that…) – some three months after it occured.  The concepts hold promise for better understanding how memories are formed and, hopefully, unformed, as in dementia. They remind us of the ethical issues at play in blocking memories.  But anyone suffering from PTSD will probably cheer at the possibility.

The odd thing about the article is that it is framed as a contest between artists and writers and scientists to find the meaning in human identity through memory.  At the start, the writer says that the artists and writers have been talking about this for centuries.  At the end, it seems, the scientists are poised to surge ahead.  It’s great to have the work of artists and writers identified – but really unneccessary to pit the two against each other…we continue to work hand in hand.  Or rather molecule in molecule.

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And I don’t think it was just the fragrance of cherry blossoms wafting through DC this week.

Monday through Wednesday, March 29 – April 1st, The National Center for Creative Aging held its Creativity Matters: Health, Wellness, and the Arts symposium.  Executive Director Gay Hanna organized the perfect blend of presenters, peppered with introducers/responders who represented national organizations that were important witnesses to the event and contacts for people at the event, including Paula Terry (NEA’s Office of Accessibility), Marie Bernard (Deputy Director of the NIA), Judy Diaz (Director of Brand Strategy for PBS), Marsha Semmel (Dep. Director for Museums and Director of Strategic Partnerships, Institute of Museum and Library Services).

The 60 people who attended the TimeSlips creative storytelling workshop on Monday (and the 100+ folks who attended the MOMA training on Tuesday/Wed) came from all over the country – which suprised both me and Gay.  We had expected more of a local crowd.

There’s clearly a hunger for the establishment of infrastructure for the field of making the arts accessible to people with dementia and their caregivers – whether they are at home with family or living in group settings.  People want to know about funding, about sustaining programs, about networking, about deeper training practices.  They want to move past limitations – stigma, fear, outdated regulations, outdated assumptions that pills are the only part of treatment for dementia.

The National Center for Creative Aging seems poised to continue to collaborate with “best practice” programs to bring these methods out to the rest of the country, and to act as a convener/connector/networking venue to capture and grow the interest in this field.  Now to figure the angle to get them the funding to do it!

HIGHLIGHTS:

  • squirming while Dina Zempsky and I waited patiently for the audio tracks to play… (you can hear them all on storycorps.net)
  • getting to present with Dina…
  • The Phillips Collection – how lovely…
  • Talking with Anne Robinson about the exciting things that are happening with this year’s Edna Gates conference in Detroit.
  • Seeing and talking with TimeSlips Trainers and others who’ve gone through the training and talked of how much they enjoy the work…
  • Amir Parsa’s usual panache!
  • Really learning more about Meet Me at MOMA – and figuring out more about the common roots of successful programs and the distinctions as well.
  • Eating good Thai food….yum – can’t get that in Milwaukee…(cruel)
  • Catching up with my friend Joe over a banana and iced tea…and talking about the wide trends in the field.
  • Collecting cards from people who are starting or have started their own programs all across the country.

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