Bruce Grierson, Deep client profiling, Dementia, Is dementia a retrieval issue?, Losing sight of the memory shoreline, New Trail Magazine, Recent trend in Dementia Care, Reminiscence Therapy, Scrapbooking, Sense of Purpose, Still Alice, The magic of story telling, The Tonic is Attention, Timeslips
In the Autumn 2018 edition of New Trail magazine, Bruce Grierson asked the question:
Are We Our Memories?
“Who are we without our memories? For people with dementia, recovering even some of the experience they have banked is a crucial part of feeling, well, like themselves again.
One theory of dementia-related memory loss is that it’s a retrieval issue, rather than a data-loss issue. In other words, the memories are still in there, only their tags have fallen off. In recent years, researchers have experimented with using sensory triggers to call some of those memories up.”
“Reminiscence therapy, this kind of intervention is sometimes called — and preliminary research suggests it can not only boost happiness levels but improve cognitive function. This year, the Canterbury Lane staff tried a simple version of it in the run-up to Mother’s Day with a scrapbooking activity. Family members were asked to contribute photos of mom or dad through the years, surrounded, if possible, by the people they have loved the most. “You’re really trying to get them to live in those moments,” activities supervisor Mbalia Kamara told me. “And then to really validate the feelings that emerge.”
For Mom, it was pretty profound. As she turned to a snapshot of her and Dad circa 1980, both of them tanned and smiling in Hawaiian sunshine, she began to cry. A staff member allowed her to sit with that sadness for a few moments, and then steered her toward the light. “He must have been a great guy,” she said. “Tell me about your wedding day.”
My own mother lived and died with dementia, and now my mother-in-law shows signs of this. I recommend the book and movie “Still Alice” for anyone who is now facing someone close who is entering dementia/Alzheimers (two different conditions, but of the same category of memory deterioration).
I have also watched friend’s parents lose sight of their memory shoreline over time, and I observed my mentor James Houston interact with his wife who eventually died with dementia/Alzheimers; I witnessed his tenderness, as author Lisa Genova expresses, “in the absence of a cure, empathy is key.”
I have wondered at the significance of memory to our personhood as I wrote in: “What am I [worth] if I am not thinking?“. I marvel that we “live in the memory of God” as Houston says.
The Tonic is Attention:
“The tonic here, as much as the memory work, is the attention. People with dementia often lose their voice as the disease progresses. The world stops listening. “People used to think that because there was cognitive impairment there wasn’t insight — but that’s not true,” says nursing professor and researcher Hannah O’Rourke. “People with dementia still know what they like and don’t like.” To pull that insight out is not that difficult, she says. “You ask. You just ask.”
A couple of years ago, Elly Park, a post-doctoral fellow in the U of A Faculty of Rehabilitation Medicine, undertook a project with researchers from Simon Fraser University and the University of Toronto on digital storytelling. Facilitators helped people with dementia create a digital story with photos, music and narration by the participant. “Storytelling is a tool,” writer Ursula K. Le Guin put it, “for knowing who we are and what we want.” People with dementia are no different from the rest of us in this way. Park’s research found that encouraging participants to think about and share meaningful stories enhanced relationships with caregivers, increased communication and interaction, and gave participants a sense of accomplishment. “In several cases, participants said they surprised themselves with the stories they were able to remember,” says Park.
… University of Wisconsin theatre professor Anne Basting received a MacArthur Fellowship, sometimes called a genius grant, for her invention called TimeSlips. It replaces “the pressure to remember with the freedom to imagine,” as she puts it. TimeSlips is like a book club where no one has read the book, except in this case it’s a photograph. Each photograph is striking and mysterious. It looks as if it has a story to tell, so everyone makes one up. There’s no way to be wrong, which seems to loosen tongues. “The absolute key to the entire process,” Basting says in a video about TimeSlips, “is that we validate everything they say.” This sounds like — it is like — improv theatre.”
The Magic of Story Telling:
“Something a little magical happens when we start telling stories to each other, whether they’re true or not. Neuroscience has shown that it boosts the sense of connection between the teller and the listener. As the story unspools, the brains of teller and listener sync up — a phenomenon psychologists call “linguistic alignment.” Another bonus: for people who can no longer have out-there-in-the-world adventures, storytelling is an excellent proxy. It stimulates many of the same parts of the brain that light up when we are actually experiencing things — just as reading does.
For the scrapbooking exercise at Canterbury, not all the families contributed photos. So those residents instead received pages of their scrapbooks with stock photos of a random family. Which sounds a little sad but turns out to be a perfectly serviceable alternative. “Just the idea of family can get people talking about their own,” says Kamara…
“Every act of memory is to some degree an act of imagination,” the neurologist Oliver Sacks wrote. We’re all unreliable narrators…
564,000 Canadians living with dementia
937,000 Canadians predicted to have dementia in 15 years
Source: Alzheimer Society of Canada
Our Purpose, Our Selves
“If the residents here were able to describe their biggest frustration, what would they say?” I asked Wendy King, executive director of the Canterbury Foundation, not long ago. “I think maybe they would say, ‘You don’t understand me,’ ” she replied.
Hence, a recent trend in dementia care toward what you might call deep client profiling. In the old days, staff received an incoming resident’s medical charts, some basic biographical data and not much else. Now, families are often asked to flesh out the story of mom or dad. The more data, the greater the likelihood a resident ends up where they belong, doing things that pluck the strings of their hidden enthusiasms.
A “sense of purpose,” as O’Rourke discovered in her analysis of dementia studies, can involve many things: the feeling of contributing to others; a belief in a higher power; some control over how your day unfolds. From a caregiver’s perspective, restoring a sense of purpose is about reconnecting people with who they used to be — placing them back in the vicinity of that intersection where, as American writer and theologian Frederick Buechner put it, their deep desire meets the world’s deep need.
What is your experience of demential, and what role do memories play in your life?
For more see, “The Persistence of Memory.“