Today’s article in the NYTs by Gina Kolata points out what the folks working in advancing dementia care have been saying all along.  We are at a point where the massive efforts for early detection have resulted in a moment when doctors can diagnose but prescribe nothing.  And by prescribe, I don’t mean pills.

In the last 6 months alone I’ve been at two meetings to address this issue – both meetings rang with enormous urgency.  In June a huge group of leaders in dementia care and research gathered in DC to create a white paper on “non-pharmacological treatments” for dementia.  They have since eschewed that name for “life-enhancing” practices.  It was a who’s who in dementia care – over 40 people squished around the tables at Leading Age (which generously hosted us).  And the white paper has been a marvel of sausage-making.  But I’m hopeful that bringing all those voices together might lend strength to the ideas that it is unethical to advance detection without advancing care.  Especially when there are so many care practices that are wrapped in promising research.

In September my friend and colleague Kate de Medeiros and I presented a paper at a special symposium organized by the National Academy of Science to address the state of research in Arts, Health, and Aging.  You can watch the video of those proceedings here.   Kate and I were stunned by the research and practice mismatches – that research that showed pharmacological treatments with enormous potential side effects, high costs, and no impact on quality of life were being implemented far more widely than life-enhancing treatments that have no side effects, low cost and positive impact on quality of life because of a gap in research.

The “gap” it seems to us is conceptual (and of course financial).  The expectation of reaching a large group of people all with the same level of dementia, in living situations that are the same, who don’t know if they are being given a placebo or the experiment treatment, by people who have been trained exactly the same (and not by one charismatic trainer) is not, I believe, possible. Does this mean we can NEVER prescribe these life-enhancing treatments?  Or does it mean we must find other methods of research that are appropriate for these enormously complex settings?

And really, who will profit from the prescription of “meaningful engagement through the arts?”

My hope comes from the fact that these discussions are happening and that a new call from the NIH is interested in figuring out this issue.  My despair comes from the fact that the conversations are happening over and over…without seeming to move forward.

My mom called me the other night with a story (that I hear a lot unfortunately) about a friend who has dementia.  It seems she was in a “nice” place, but is now reported to be getting “aggressive” and they are demanding that she be drugged or they won’t be able to keep her there.  Perhaps I’ve been in the “bubble” lately, only hearing the talk of colleagues who KNOW that “behaviors” are communication – telling caregivers that something in the care context isn’t right.  They have an unmet need.  So these moments when you see these drugs used as an excuse NOT to change the care, not to inconvenience the caregivers, is a bit of a shock.

The advances made on alerting people to the side effects of psychotropic drugs (side effects like death…) hit a wall recently when a New England Journal of Medicine published an article about the “risk of relapse” in people with dementia who are taken off Risperdone.   The “challenging” behaviors come back.  They make NO mention at all of the possibility that the toxic environment of care might still be present as well.  That their needs – perhaps for pain medication, perhaps for basic human connection – might still be unmet.

I continue to work on ways to bring Life Enhancing treatments to people with dementia.  These same treatments also enhance the lives of the people who provide and participate in them – because they help to forge a sense of purpose and meaningful relationships in a very challenging physical and emotional time.  We are working to wrap research around these practices – research that will hold up.  But I know deep-down that with the competition for dollars in the field, these practices will never be “prescribed” unless we create consumer desire for them beyond the data.

The talk of my title is Forget Memory – Try Imagination.  Today I was putting together the powerpoint and included some of the groups I just met/learned about over at the Creating a New Old conference in Ireland. 

One of those groups is Spare Tyre, based in London.  They have a pretty remarkable program called “Once Upon A Time” which uses mythic storylines in a rich sensory (touch, light, sound, texture etc), process of engaging with people in mid-to late stages of Alzheimer’s.  The slide show on their website really captures the power of this work. 

Can’t wait to share it, along with so many other great projects out there.  Of course I get to share a bit of the Penelope Project and some early ideas on the new project, Shipwrecked! 

And we also sorta prefer not to refer to people at patients…

Thanks to Nora in Seattle for being so open and willing to being interviewed! 

Familiar things.  Familiar pathways.  Familiar sounds.  Familiar objects.  Reassurance and comforting when the lapses occur.  And opportunities for symbolic self expression when cognition blocks or interrupts rational language.

Two recent articles in the NYT’s affirm this approach, which is, at last, starting to make sense to the general public and care providers.  Cathy Greenblat’s new book of photographs and an article about a care facility just outside Amsterdam show us how engagement, expression, and the built environment are, as John Zeisel says/writes, part of the treatment plan.

I’ve written extensively about the stories we tell about aging and dementia – and about how they need to change.  Well…they are.  I was overwhelmed at times (cried like a baby…or maybe that was Banker’s baby) at the depth of talent and power of story in that room.  And all of it aimed at helping change the way we think about aging and the quality of life of all of us as we age.

Some of the films are already finished.  Some you can look for in the near future.  For sure I’ll be hosting a film series in Milwaukee – so those of you in my neck of the woods have that to look forward to.

There are several dementia-oriented films coming out soon – all of which push us to see the world through the eyes of the PERSON with dementia.  Trevor Albert is working on a documentary about Glen Campbell’s “farewell” tour.  Scott Kirschenbaum’s You’re Looking at Me Like I Live Here and I Don’t is out THIS WEEK (I can’t wait to see it…).

And my new friend Banker White is at work on The Genius of Marian, a beautifully crafted story of his mother’s effort to create a book about his grandmother’s life as an artist (shortly after she died of Alzheimer’s) – only to discover that she has young on-set.

All three are stories of strength, of sorrow AND of joy, and of families coming together.

When I wrote Forget Memory, the chapter on film was fairly bleak.  The best representation of dementia was a little blue fish named Dory.  But now, just a few years later – there is abundance. What hope for families.  And they will need all of these films they can find – it’ll take a 100 of them to move the medical establishment and the stigma.

There is definitely a shift in the air…at least in the memoirs about the dementia experience.  The policies and official organizational language still lag, of course…but perhaps with the army of the newly diagnosed helping to fight for their dignity, even those will begin to change.

I wrote an essay several years back on autobiographies by people with dementia.  The bulk of them at that time were chronologically told – and hid evidence of the condition in seamlessly told narratives.  Could you make a statement about the strength of people with dementia if you didn’t actually perform or show dementia itself?

Well.  I saw the Glen Campbell show tonight.

I didn’t take notes.  And honestly (and ironically), I’ve forgotten a couple of the most poignant moments – lines from songs, or quips that he rattled off that were spot on – performing both strength and his condition at the same time.  But the overall evening will be with me forever.

I brought my 6 (soon to be 7) year old son Will and my 10 year old son Ben.  Both are musicians.  And I brought my 74 (soon to be 75) year old mom and dad.  I can see the Glen Campbell album covers in my dad’s collection.  I can hear them.  I can hear dad playing guitar.  And I play – still – and aspire to the velvet tones and agile fingers of Mr. Campbell.

The show is clearly billed.  This is a farewell.  He has made his Alzheimer’s public.  The Alzheimer’s Association walked through the aisles with buckets for donations.  There are no surprises.  There is no hiding anything.

On the contrary, it is quite visible.  Glen gets hung up on things that he can’t let go of.  The sound levels were a particular distraction at tonight’s show.  He mentioned them, during songs, multiple times.  Too loud.  It’s too loud here.   He seeks out the monitor with the lyrics.  He skips a line here or there.  But just as you get used to the skips, he bursts into a guitar solo that takes your breath away.  And you feel the strength amidst the loss.  Just as you get used to his daughter Ashley (one of three Campbell children on stage) explaining that he is borrowing her guitar because his keeps shorting out  (and if you know Alzheimer’s you think…oh – something out of the routine is the LAST thing they need…), Glen goes into a solo (acappella) of the Moon is a Harsh Mistress that blows your heart, mind, and soul.

For me, it was a thick night.  Visions of the musicians my children will become (if I’m strong enough to make them practice).  Memories of the music my dad played (vinyl and live).  And the music inside me.  It was also the antidote to so, so many public message/images/stories of Alzheimer’s that I’ve spent some 15 years complaining about.  “Alzheimer’s is more than tragedy,” I say.  People are still living.   And here it is.  An unapologetic performance of dementia, combined with inexorable beauty — in the music and in the powerful scaffolding of a family that embraces and supports him through it all.

The gorgeous new songs with spot-on lyrics – Ghost on the Canvas and A Better Place.

The dueling banjo/guitar.

I Can’t Stop Loving You.

Glen turning the microphone toward the audience for an exuberant  sing along of “There’ll be a load of compromising, on the road to my horizon, but I’m gonna be where the lights are shining on me!”

So many moments made richer by the open and unapologetic embrace of vulnerability, mortality, and memory loss — of Glen, and eventually, of all of us.

Thank you Glen and Kim and family –  for your enormous generosity and bravery.  I wish you more of both as you continue on your journey.  And may the lights shine on everyone with dementia.

To share the model and inspire others to create their own extended, rigorous, collaborative projects, the partners behind Penelope are offering a Summer Institute.  From June 24th to June 28th, attendees are invited to experientially learn:

• the meaning and power of partnership
• the basics of aging and dementia
• how regulations shape (and don’t shape) activities in long term care
• some basic techniques for collaborative storytelling and art-making
• how to work “site-specifically”
• how to ignite individual and organizational change
• how to do simple project evaluation
• how to design a project

We will also premiere the new documentary about the Penelope Project at the Institute.

Come join us for this exciting experience, taught by the artists, teachers, researchers, care-providers, and residents who collaborated on this unique project.

REGISTRATION IS NOW LIVE at www.aging.uwm.edu.