A Wonderful Week with Richard Taylor and Friends
We’ve had a great week at St. John’s. I brought Dr. Richard Taylor, award-winning author of “Alzheimer’s from the Inside Out” to speak to our community. The planning led to a mini-chatauqua with several luminaries in tow: Judy Berry, founder of Lakeview Ranch homes in Darwin MN, and winner of an RWJF award last year; Mona Johnson, author of The Tangled Neuron blog and currently exploring transmedia to find new ways of educating people about dementia; Sarah Rowan, Eden board member, former care partner and educator extraordinaire; and Barabas Julius Keya, a very talented videographer.
Richard spoke several times, to our staff, elders and the greater Rochester community, and the rest of the group spoke as well. Then we spent yesterday afternoon working on a DVD of answers to common questions about dementia – a project Richard has been wanting to do. Each of us stood up and gave our own perspective on the various questions. Bill Thomas and Anne Basting will eventually add their insights to the project as well. Today I speak at the Alzheimer’s Association, and they all have to sit and listen to me! But now I’m better informed by all I’ve learned from them this week.
Here’s a nugget I learned this week from Richard: People living with dementia need to be enabled, and some need to be “re-abled”. Our approach to care disempowers, isolates and overmedicates people with dementia, creating excess disability – more disability than the illness itself would cause. By enabling people with dementia, we accept that they are not dying from a fatal disease, but living with a chronic disability. In so doing, we create opportunities for them to grow, engage and succeed.
Others have given up on things they are able to do, because we have convinced them that they no longer can or should do them. (This includes decision-making, and I am NOT just talking about nursing homes!) This group also needs to be “re-abled”: encouraged and helped to use those retained skills that they have been told are no longer valid.
Richard also feels that dementia is not so much losing cognition as it is losing the ability to organize and retrieve it in a timely fashion to succeed in our world. This is borne out by the moments of lucidity people have, even with advanced illness. The thoughts didn’t disappear – they are still there, but hadn’t been released.
This should be exciting news, because it means we can try to find ways to tap these reserves and re-connect people thought to have been lost to connection. This doesn’t require a new pill – it can happen today. Nancy Pearce’s book (mentioned in my last post) addresses this, as does a new book on creativity and demenetia, edited by Hilary Lee, which will be released this year.
As Richard says, we need fewer pharmaceauticals, and more “social-ceuticals”.