FORGET MEMORY BLOG

Re the article Ventriloquism Helps Memory in the AARP Bulletin – I’m thankful that AARP is profiling positive engagements with people with dementia.  But they simply must find a new language to do it.  People with Alzheimer’s are MORE than “patients.”  And the old trope of “second childhood” is just offensive.
I do hope AARP continues covering this important issue — which will only grow in relevance to people of every age.  But the framework and language must change.

Here’s a lovely article about one of the 10 cultural institutions in the Spark Alliance here in Milwaukee.  These museums and cultural organizations are part of transforming the culture of dementia care by making everyday life accessible to and embracing of families with dementia.

What a lovely job the Today Show crew did -click here to watch it.

they were genuinely open to and moved by the storytellers – and I think it showed in their editing/narration of the segment.  A hopeful image/story of dementia…

Let us know what you think!

Back in October 2011, the Today Show crew came to Milwaukee to shoot a segment on TimeSlips creative storytelling.  The project had just launched a huge new website with free, interactive storytelling software designed to bring creativity to families with dementia wherever they live, as well as a 5-module online training in the method.

Looks like the segment is scheduled to air on Friday the 25th, between 7:30 and 8:00 a.m. EST.

Jenna Bush was the reporter on site in Milwaukee – she had a tremendous ease/comfort with the group of storytellers gathered at the Luther Manor Adult Day Center, and clearly understood the power and value of storytelling.

Jenna interviewed the staff, storytellers, a family member, and me – the whole TimeSlips crew is hopeful that this segment can inspire families to move through their fear to find each other again through stories – real or imagined.

The long plane flight to Brussels gave me a long overdue chance to read/finish a couple of books, including Susan and John McFadden’s Aging Together:  Dementia, Friendship, and Flourishing Communities.

I’m a long time fan and friend to both John and Susan, and I have them both to thank for the development of my own ideas on dementia.  So reading this was a personal journey (watching our friendship and conversations over the years evolve into the printed word) and a professional treat (gasping at times at the beauty and solidity of their ideas/words).

The book is academically rigorous – incorporating research from fields of theology, psychology, sociology, history — and yet also inviting and readable.  It could be a text for grads, undergrads, or informed readers.  What any level of reader will walk away with is a deeper understanding of:

-the history and theory of self, community, and friendship

-the history and theory of the state/diagnosis of dementia

-personal stories/models of how families with dementia have negotiated the challenge of maintaining love and friendship

There were moments when their framing of the issue made lightbulbs go off…as in their discussion of the history of how “man” being created in the image of God has changed across time.  Pre-enlightenment, it was the BODY that was imagined as created in the image of God.  Thus leprosy was seen as an abomination.  Post-enlightenment, it was the MIND that was imagined to be created in the image of God.  Thus dementia is seen as the new leprosy.  We fear and distance ourselves from it at all costs.

Another moment was their careful analysis of the various types of friendship, and the realization that friendship has fallen victim to capitalism and been commodified.  The true rewards of friendship operate outside of the value/market exchange.

Finally, my favorite element of the book is their notion that the biggest challenge for people with family/friends with dementia comes at the moment when fear and compassion both flare up.  In my mind, this book is an effort to help coach us through that moment -to calm ourselves in the face of tremendous fears and to choose the path of compassion.

Thanks to Kirsten Jacobs of Leading Age for bringing together an inspiring group of folks working in creative engagement for the Sat. Oct 15th 4.5 hour preconference session.

Kirk Murphy of Sandglass Theater in VT provided an overview of their project with Renya Larson and the folks at Holton House in Brattleboro.  They used the TimeSlips storytelling process to elicit imagination-based stories and then created a puppet theater piece inspired by the storytelling sessions.

Kelli Holsopple of Phoenix Theatre Ensemble in NYC led the group through the creation of stories and movements about the word “evolve,” and shared clips from the documentary Stages which follows an intergenerational theater-making process.

I talked about the Penelope Project as an attempt to infuse creative engagement into an entire care facility – encouraging ensemble/collaboration not just among the residents and an activities professional or visiting artist, but also among the entire staff, family, volunteers, and admin team.  We walked through a few of the creative discussions that were led by students and staff during the “data gathering” period, and then talked briefly about the play itself.

Finally, Michelle Pearson and Shula Strassfeld of the Dance Exchange led us through a series of engagements with a scrap of newspaper – movement, current events, and discussions (and then physical manifestations) of our reactions to the news, our own news, and what was missing from the news.   All along, they shared the stories of using this method in intergenerational settings as part of a MetLife grant to infuse creative engagement into long term care.

Questions that lingered among the group of nearly 40 attendees included 1) how do you approach an arts group to partner? 2) how do you fund these? 3) how do you get buy-in from your organization?

I sooo look forward to the UWM Create/Change Summer Institute now (June 24-28, 2012) – it’ll be an opportunity to explore all these issues and more, all taught in collaboration between a long term care partner, and arts partner and a university partner!