FORGET MEMORY BLOG

There was a surprise moment for me today in the middle of a day-long pre-conference intensive at the Pioneer Network conference in Indianapolis (2010).  First we talked about “the meaning of meaningful” – as we tried to figure out how to make everyday activities meaningful in long term care.  Then we took a turn.  “Not every activity has to be meaningful,” someone said.  “We play Bingo 7 days a week.  We tried to cut it down to 5, and the residents made picket signs and protested.”

I was stunned.  Is it REALLY that popular?  Why?  I asked people to dissect Bingo.  WHY do they want to play it 7 days a week?  What are the elements of Bingo that we can apply to other activities that the residents are clearly not engaging with?

What did they say?  They like to WIN.  They might never have won anything for years.  They like the spontaneity – the element of surprise. They like the relaxing quality – an activity they can do without explanation, and don’t need help.  (who likes that I asked…staff or residents?)

The discussion went on and on – some folks defending Bingo with all their heart.

I’m not saying Bingo is evil.  I’m saying that if your residents are THAT reliant on Bingo, you need to seriously look at what other programming you are offering – and if it is reflecting the interests/needs of the residents.

I also asked just how people might be able to wrap meaningfulness around Bingo.  Earlier in the day, someone mentioned that seeing an aide and a resident in close discussion is an ideal.  That is engagement, and it models relationships for the whole group.  HOW could we possibly get to that through Bingo?

Have residents make up their own cards – use a different word of their choice – and custom make the boards.  Give them as a gift to another group.  Invite in people to play with.  Create your own celebratory ritual for winners.  Create social roles around Bingo – (Bingo Captain of the week; Prize Distributor).

I still think that Bingo addiction is a sign that other programming is off.  It’s thinking small.  It’s not thinking about learning and growth and engagement.  But…if you DO have all that…an occasional Bingo game won’t kill you…;)

In his article “Letting Go” in the New Yorker, Gawande again weaves a gorgeously rendered thread – this time showing us just how badly we need what those who so badly sought to sabotage health care reform called “death panels.”

In truth, they are the hard conversations that no one wants to have about choice and mortality.  The first (choice) is why we founded this country. We fight for it with all our might.  The second is what we deny and fight AGAINST with all our might.

Gawande takes us through those conversations and their implications.  He picks very hard cases – mostly people under 70.  And one case in which a woman had to have her baby first before beginning radical and ongoing cancer treatment.  These are heartbreaking cases that the human mind can barely contain – whether one is reading it, or experiencing it directly.

How to move forward in the conundrum of end of life care?  The most promising path seems to be to offer BOTH options for treatment and hospice – particularly with Gawande shows us that studies suggest this lowers the cost of care and improves quality of life.  It might even extend it.

Gawande did mention dementia, but didn’t use any examples of the dying process in dementia or Alzheimer’s.  I wish he had…we so badly need models of how to handle these scenarios.

I was so struck by the human nature to FIGHT.  At first it is to fight the diagnosis and prognosis.  And sometimes it pays off.  But then that fight can turn to fighting the system that prioritizes the prolonging of life and is rewarded by treatment, not quality of life and satisfaction of patients.

I’m fresh back from a trip to Europe where I met some amazing folks and made several presentations on creative engagement in dementia care.  Here are just a few highlights – I’ll post more on each one later.

• gave an overview presentation on creative engagement focusing on TimeSlips in Florence, Italy at the Palaza Vecchio.   Later in the day, I gave a two-hour introductory workshop on the TimeSlips method in a theater in the garden of a lovely little bookshop.
• gave a presentation on “From Memory to Imagination: linking generations through creative engagement” at the “Lebensalter” conference hosted by the University of Graz in Bad Aussee, Austria.  I was the only presentation in English…so it was a little hard for me to tell how it went!
• presented as part of a two-day workshop on spirituality and dementia care at the University of Zurich’s Zentrum fur Gerontologie.  A kindred center to our own Center on Age & Community.

I think we’re all hoping that this trip helped establish a foothold for bringing the TimeSlips creative storytelling method to Switzerland and Italy…stay tuned!

I had the great opportunity in May to work with the Minneapolis Institute of Art. I was offering a training for their incredibly dedicated team (with amazing bench depth, to continue the metaphor) of volunteer docents.  The docents are well trained and supported, largely in the visual thinking strategies approach to creating engaging discussions about art with groups of museum-goers of all shapes and sizes.

MIA staff wanted to add creative storytelling to the toolbox of their docents, particularly for their “Discover Your Story” program that welcomes people with dementia and their families to the museum.  The idea is that some tours will blend discussions of the artwork with a stop at a work that inspires a creative, group story.  And some tours might all feature creative stories.

The training went swimmingly in the a.m.  Smart questions, lots of fun.  In the afternoon, we set out into the galleries in small groups to enable the docents to try their hand at their new storytelling tool.  Sheila McGuire  (Director of Museum Guide Programs for MIA) and I observed the small, pilot groups and offered a few suggestions.

It was fascinating to witness the friction points between the TimeSlips approach and a Visual Thinking Strategies approach.  And in some cases, a simple human tendency toward efficiency rather than inclusion. You could see the VTS reflex when the facilitator would ask “What do you see here?” and  “What makes you say that?”  Sheila and I would encourage them to ask a question (both approaches are built on open-ended questions) that invites an imagination-based response to the world OUTSIDE the picture – something that falls outside of VTS, but that is squarely in the realm of TimeSlips.

VTS aims to develop critical thinking and group dynamic skills by facilitating engaging discussions about works of art.  Its core audience are children.

TimeSlips aims to create a sense of belonging and provide access to meaning-making through imagination-based and improvisational storytelling.  Its core audience is people with cognitive disabilities, usually in the later years of their lives.

It was fascinating to watch the docents as they tried to embrace the new approach – it felt a bit like watching them rub their bellies and pat their heads at the same time.  There is the illusion that the methods are doing the same thing (open-ended questions, engaging and facilitated discussion based on the group responses).  But there are key differences that you feel as you practice the creative storytelling approach with people trained in VTS.

There is also the basic human impulse to speed things along by leading the discussion a bit to get folks on the “right” track.  This isn’t part of either approach…but is hard to resist when you’ve got a group of people you’re trying to move through galleries.  I’m fascinated to learn more about the VTS approach (perhaps even take some training) to more fully understand the similarities and differences.  For now, I see them as built of some similar techniques, but with very different goals.

Imagine a building that housed adult day services that offered a broad menu of the latest approaches in creative engagement techniques.  Music, dance, visual art.  Intensive sensory stimulation.  The rooms also have an observation room attached, so researchers can watch and code – and approach engagement with the same rigor as pill research.

Imagine that that building also has in it an auditorium, classroom, and conference room with all technological amenities to support international gatherings of experts.

Imagine it also has rooms for families to have respite overnight.  And several private rooms for longer term stays.  Imagine a high-design lobby with stunning modern furniture and long/tall (seemingly endless) windows overlooking a medieval university town.

This place exists.  Perched on a hill outside Salamanca Spain, this is where the panel of international experts in “non-pharmacological” care approaches for people with dementia gathered in late May of 2010.  And where perhaps 5 more such gatherings will take place over the course of the year.

From the perspective of “person-centered care” (or person directed or or or ), it’s not perfect.  Some staff wore white lab coats and its not clear how much choice the participants/residents had in their programming.  But the intention of the place, and the grandness of the commitment to that intention is astounding.  It is a place with resources and leadership and staffing dedicated to finding the best way to CARE for people with dementia, and through best care practices, changing the course of the disease.

I felt honored to be among the first gathering in Salamanca, and will eagerly follow the news of the next rounds of expert gatherings…

I feature a chapter in Forget Memory on TimeSlips, a project I started way back in 1998.

We just got news this a.m. that we received $100,000 from the Langeloth Foundation to support the TimeSlips Online project.  This will bring the creative storytelling method that eases the pressure to remember by encouraging people with dementia  to use their imaginations.  The funding complements support from the Extendicare Foundation, the Retirement Research Foundation, and the Picker Fund, and will enable the UWM Center on Age & Community, where the TimeSlips project is based, to put our TimeSlips training online and create a new website.  The website will enable people with dementia and their caregivers to do storytelling one-on-one, in a group setting, or in a virtual group – with friends/family who are far away.

We are in the process of gathering proposals from web companies who will create the site for us, and I’ve got one module completed for the online training…so it’s underway!

The Memory Disorders Project at Rutgers has a great newsletter (Memory Loss and the Brain) and they did a nice interview with me awhile back that is now appearing…  Check it out!

I’ve been reading some articles of late that have me thinking about the changes afoot in the field of aging.

One was in AARP’s magazine on “Boost your Brain Health”, which features the new video games designed to challenge your mind in the hopes of reducing age-related memory loss.  This is good – it’s like getting bifocals for the brain – a natural, preventative coping method that can improve our functioning as we age.  But…I see these games like workout gyms, and I find workout gyms totally depressing – with their rows and rows of equipment where people plug into their i-pods and zone out with 50 people surrounding them, all plugged in and going back and forth on their machines in an oddly orchestrated yet totally disconnected rhythm.

I also saw an article about a program in England that has developed touch screen technology to help people with dementia do reminiscence, and also another program to help link them to the moment.  They show a person working with them – which is good.  But my fear is that this is another device to hook someone up to.

Do we really need a touch screen?  Do we really need the computer games that have us find number patterns?  To me, what works is engagement.  Creative, in the moment engagement that looks past loss and develops/connects with remaining skills.  We are developing a new website for TimeSlips to enable caregivers and people with memory loss to tell stories together and use technology to share in the process with relatives/friends/e-pals who are far away.  It’s meaningful, creative engagement that is shared in person and electronically.  It’s a tool to prompt in-person relationships and create a “web” of support around people with memory  loss.

It’s fantastic to have inventive people addressing the needs of our aging population.  MORE! We need More of them!  But we should question the core concepts of every intervention.  What is its attitude toward people with dementia? What is it replacing?  What is it designed to do and why?  We’ll only move forward if we continue to promote relationships with people with dementia, and assume their ability to grow/express themselves.  We’ll only use brain boosters if they are meaningful – not medicinal.