Over the course of two days, we visited MOMA, The Museum of Folk Art, and theMetropolitan Museum of Art to learn and observe (I actually presented a session on arts/creative engagement programs across the country).

The buzz was tremendous.  The museum educators (and one community partner) had some amazing ideas of how to work together in coalition – to share trainings, promotion, etc.  to let families know about all their programs.  This is truly a new wave…

*the concept of “gerogogy” came up several times.  As did the idea that “activities” should focus on learning, not “doing” or keeping people busy or “occupied.”  This made me think about the fact that the medical industrial complex overshadows any other framework in late life.  Is it even possible to grow old without an assumed calculus of measurement?  of how successfully we are aging?  of how intact our cognition is?  The arts might be part of a liberation movement for elders – a radical reframing from the calculus of health/therapy/treatment to expression and learning.  From being acted upon  and treated toward acting/agency.

*the concept of enchantment came up – I confess it’s a word that I use in trying to describe just what I hope we can do to “activities” like “sort poker chips” or “sort silverware.”   We teased out the meaning of “enchantment”…saying that it meant making it magical – which I interpreted as infusing it with mystery and meaning for multiple groups of people.  One of the highlights of the think tank for me was the transformation of the activity of “sorting silverware” into an international, intergenerational communal table project in which elders designed the invitation, the meal, grew the food, and set the table.  The meal was then shared through the internet with sites doing the same activity across the world.  Now that is enchantment.

*We talked a lot about a “model” of a project that envisioned many entry points for different groups/types of people, and exit points to share the project with multiple audiences.   Thus “sorting silverware” became a 3-6 month international project.

*We got stuck several times on the notion that we can’t really transform (let alone “radically”) activities in LTC without transforming the health care system.  SO much of how we see/envision activities is bound up in how we pay for and value (or devalue) them.  There was a groundswell here for creating a media campaign to rebrand aging to insist on dignity (satire was the approach we thought might intrigue multiple generations to join the fight) of elders regardless of disability.

*at the end of the day I think the biggest impact of the Think Tank was simply bringing really smart, savvy, and community-inclined artists together with leaders in the field of aging services, caregivers, and youth and elders.  There were several moments when I witnessed mouths agape at ideas that clearly rocked someone’s world.  It’s rare we get to see the world through different eyes.  And the view can be so illuminating…

* in sum sum then…people with dementia and elders in general can grow, learn, be creative, engaging people.  And those without dementia can learn and grow from sharing their company.

The study of these folks by USC and UC Irivine is trying to tease out the answer to the condundrum “Are they active because they are sharp or are they sharp because they are active?”

The study is finding that exercise and diet aren’t as big of an indicator as some studies are suggesting – but that mental challenge/exericise and social engagement are.

“So far, scientists here have found little evidence that diet or exercise affects the risk of dementia in people over 90. But some researchers argue that mental engagement — doing crossword puzzles, reading books — may delay the arrival of symptoms. And social connections, including interaction with friends, may be very important, some suspect. In isolation, a healthy human mind can go blank and quickly become disoriented, psychologists have found.”

But the most fascinating thing about the article is the way the group of card-playing “super-memory” 90+ year olds talk about what happens when they detect one of them is slipping.  They are kicked out of the group.  And, as they observe, their isolated friends quickly decline.

My question is WHY?  Isn’t there something else they could do that could maintain their friendships?  Like maybe…ART?  DANCE?  MUSIC? POETRY?  WRITING?  Cards are fantastic.  But you can also challenge yourself mentally in a non-competitive way that allows for friends to maintain social connections rather than set them off on the ice-flow.

Here are my thoughts as I was watching…

The opening segment is about a woman who is really pretty early in her memory loss.  She is a hoot, as my mother would say.  She gets together with women friends in a singing group and they serenade a local nursing home.  The segment almost feels like a commercial for Aricept… “that’s where I got the idea to take pills for my memory” she says…and then later, we see her getting her prescription and swallowing the pills.   She seems pretty fine about things.  At one point she tells a friend “sometimes I can’t remember your name.”  “That’s okay,” her friend says. “I’ll tell you my name if you forget.”   THAT to me is HOPE.  More than the pill she takes in this segment, which will help for a couple months maybe.  But her friends will help her through to the end.

Another segment features a self proclaimed computer genuis, who isn’t anymore.  We see him in a therapy session (now THAT is opening yourself to a documentary!) in which he tells his doctor in so many words that he plans to kill himself as soon as he feels that he is “no longer really himself.”  It’s important to show this – as this really is what you hear people saying.  But it’s also important to show that this isn’t the only option.  And that that is painful for the family too.

There’s a segment on a woman living on a farm with her daughter.  She speaks only in a kind of sing-song sound and wanders…but we gradually realize that she was and remains an artist.  Her daughter photographs little “vignettes” that her mother makes and leaves around the farm for her to find.  And they are wonderous.  There is clearly emotional pain here – the daughter is so hard on herself when she shows her mother a stone and her mother puts it in her mouth.  But there is also mystery and connection on a deep level.  The sorrow here is when the daughter says she never had children…and you wonder who will be as tender of a caregiver to her as she is to her mother…

There’s an amazing segment about a man who happily whistles and sings and walks with a tender and loving companion…whom we learn is not his wife.  One of the most touching scenes I’ve seen on film about dementia is in this segment.  The camera follows the couple as they walk into an empty bedroom and lay down on the bed together.  The hold each other.  She strokes his chest as though they were newly weds.

His wife and daughter are rather astounding – they walk in and warmly greet the two of them and explain to her that he’ll be back soon.  They take him to a concert of his singing group – and in the car he asks over and over again where they are going.  When the choral leader introduces him as leading a song…we really don’t think it’s possible.  And then the miracle of music and memory – he sings clearly, confidently, beautifully – the entire song.   A standing ovation erupts.  This is community. This is the arts bringing people with dementia into community.  Wow.  And then in the car – he has no idea again.

There is a haunting segment about a woman experiencing hallucinations – which can be part of the Alzheimer’s experience.   There is a lovely moment in the beauty salon when a fellow resident tries to comfort her clearly paralyzing anxiety.   But one of the most difficult moments in the show is when her son struggles with his mother not remembering him.  It shouts out for the need to help families move beyond memory – just be there with her, talk to her in the now, try to comfort her anxiety.  It’s hard…but it is possible.

There is a segment on Cliff, magician and host of a beloved and long-running children’s television show.  His wife is elegant and loving – and makes you wonder why some people get this and not others?  Truly, why?  We watch him edge toward hospice, and then are privy to his final moment.  It is a true gift of this loving family to share this moment with others who will soon face it.  May they be fortunate enough to experience the quality of hospice care that Cliff did…

And after this powerful moment in hospice, we end where we began, with the woman taking her memory pills…leaving us anticipating the potential trajectories of her journey into Alzheimer’s.

The messages of this episode were more complex than I anticipated…they showed the incredible power of the arts to help people communicate with people with Alzheimer’s and dementia – and the incredible NEED for these programs.  MORE MORE MORE!  Right now, companionship, community and creative expression are doing much more than that pill.

I’m neck deep in thinking about “activities” now as I prepare for the Center on  Age & Community’s (which I direct) Next Step Think Tank.

Artist David Greenberger and musician Paul Cebar

This year, we’re gathering leaders in the arts, education, aging services, and media and technology, as well as students and family caregivers to think about “How can we radically transform activities in long term care?”

Over the two days, we aim to 1) describe what we’d like activities to be like – for those living in individual homes or in group settings; 2) enchant or enliven a dozen or more “recommended” activities according to our own description of what activities should be like; 3) identify why activities aren’t working or aren’t accessible now; 4) imagine ways to help them work.

And dare we imagine a better word than “Activity?”

Our first question for the day on May the 14th will be…”what is the meaning of meaningful?”
We commonly hear that activities should be “meaningful.”  But just what does that mean?

The opening event for the Think Tank is Cherry Picking Apple Blossom Time, David Greenberger and the Paul Cebar Stage Ensemble’s performance of songs inspired by conversations with people with memory loss at the gorgeous Pabst Theater in Milwaukee.  I’m struck by the timing – such a powerful, empowering message for people with dementia coming the night after the HBO Alzheimer’s Project.

Imagine an “activity” in a nursing home being collaborating with an artist to create a collage of songs that will be made into a cd and then performed in your community at the most beautiful venue in town?

I am reminded of something Naomi Boak (Exec Producer of the documentary The Forgetting) told me once.  In so many words, she said that the point of film/tv is to have a big message that gets/holds attention and leads people to more nuanced ideas on websites, articles, and books.  But is it worth it?  Do people ultimately get the more nuanced information?  In response to the AARP interviewer’s question “Why should more people be concerned about Alzheimer’s”, Shriver talks of the increasing numbers of people with early on-set, and then says “and with Alzheimer’s you are out of commission on every level. You need 24-hour-a-day care, but we don’t have enough caretakers and facilities.”

Eventually yes.  But the more nuanced story would explain that people can live 15 years with Alzheimer’s and other types of dementia.  I worry, as I do throughout Forget Memory, that such alarming statements usher those trying to live with the disease (and I can imagine Peter Whitehouse cringing at my use of that term!) right back into stigma, social isolation, and shame.

David Shenk and I have a friendly disagreement on this – as I do with many scientist/researchers.  Perhaps they are right and the race for the cure and the tragic story need to lead popular consciousness in order to get any attention for Alzheimer’s in our landscape of multi-tasking where ageism and other fears keep most people’s heads firmly planted in the sand.  Perhaps those of us in the arts and person-centered care movements just need to get a lot louder.

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.

“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.