March 26th kicked off the latest edition of Alzheimer’s Disease International in Toronto with “A Changing Melody”: a pre-conference event that celebrates people living with dementia with an all-day symposium that is largely planned and presented by people with various forms of the disorder.
After a musical introduction, the event was kicked off by Australian author Christine Bryden, whose book “Dancing with Dementia” was a central influence on my own writing and thinking. Christine was diagnosed with dementia at age 46. Now 16 years on, she is again traveling and enlightening the world with her insights.
Christine kicked off a session that dealt with “Coping with Stigma and Fear”. In a rather pointed comment, she remarked:
“What causes the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support and services. It’s a Catch 22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.”
The symposium had each segment punctuated by small group discussions, as tables mixed with people living with dementia, their families and professionals grappled with the issues.
At our table, Canadian Jim Mann shared how he copes with the stigma and fear: He looks for “teachable moments”. Often, when traveling with a book about Alzheimer’s on his lap, a nearby passenger will ask him about it, assuming he is a doctor or some other care professional. When he explains the truth, he uses their surprise to educate them about the fact the people who have been diagnosed with dementia can continue to find meaningful work, as he does with his local Alzheimer’s chapter.
Mary McKinlay gave a stirring talk about her life over the past five years with Alzheimer’s. She regaled the crowd with her dry wit and a wealth of advice about how she has enabled herself over the years.
She gave a description of problems with the shower that care partners far and wide should heed: “This morning ritual…seemed to be just too much input for my senses. The sound of the water, plus the water hitting my head and skin became more than I could handle. I began experimenting to find out how to make this an enjoyable activity again. Wearing ear plugs helped deaden the noise. And if I start the water running, then get in the tub at the far end, away from the shower, I don’t have the force of the water hitting my body to contend with. I have a shower stool to sit on and I can extend one limb at a time under the water.”
The conference was designed with the needs of people living with dementia in mind. It was paced with plenty of breaks and alternated brief talks with small group interactions. Music punctuated the segments and the was a quiet room for those who needed a break from the stimulation.
Even the washrooms had simple, enabling reminders:
I’ll be posting more reflections of ADI this weekend at allenpower.wordpress.com.