Elder care book club

October 15, 2023 9:45 AM

This is the 1st iteration of the elder care book club that will have an asynchronous discussion here in FanFare and perhaps a live, virtual meeting to cap off the conversation. The goal is to create a space for learning and mutual compassion as we all support the elders (parents, relatives, chosen family) in our lives. The first book is Creative Care: A Revolutionary Approach to Dementia and Elder Care by Anne Basting. For those who would be able to listen to a podcast interview but not read a book, here's an episode of Zestful Aging that features Anne Basting (43 min, 2020).

The Bookshop summary of Creative Care:

A MacArthur Genius Grant recipient, Basting tells the story of how she pioneered a radical change in how we interact with our older loved ones. Now used around the world, this proven method has brought light and joy to the lives of elders--and those who care for them. Here, for the first time, everyone can learn these methods. Early in her career, Basting noticed a problem: today's elderly--especially those experiencing dementia and Alzheimer's-- are often isolated in nursing homes or segregated in elder-care settings, making the final years of life feel lonely and devoid of meaning. To alleviate their sense of aloneness, Basting developed a radical approach that combines methods from the world of theater and improvisation with evidence-based therapies that connect people using their own creativity and imagination.

Rooted in twenty-five years of research, these new techniques draw on core creative exercises--such as "Yes, and . . ." and "Beautiful Questions." This approach fosters storytelling and active listening, allowing elders to freely share ideas and stories without worrying about getting the details "correct." Basting's research has shown that these practices stimulate the brain and awaken the imagination to add wonder and awe to patients' daily lives--and provide them a means of connection, both with the world and with those caring for them. Creative Care promises to bring light and hope to a community that needs it most.

Here's a 15 minute TED Talk by Anne Basting.

P.S. Suggestions for books, articles, audiovisual materials, etc are very welcome.

posted by spamandkimchi (13 comments total)

I've only read the Kindle sample, but wanted to comment here in case I don't read the rest. I can see there are two of her other books on the Internet Archive, so may try those. Find the style a bit florid, though perhaps it will quieten down as it goes on.

As far as I've got, she's making a point about arts in dementia, with which one can't really not agree. My own father (used to be a drama teacher and a novelist, as well as some less arty careers) is in the process of joining an art group for people with dementia. It's been a bit tricky to get him to this stage, and I think there will be bumps along the way, but if he can continue it it's got to be a good thing. He also really likes daft conversations. Which can be more tiring than "sense". My step-grandmother, on the other hand, whose care I was part of until she died a few years ago, resented any attempt at playfulness or whimsy once she had dementia. I don't think she'd have coped with the kind of imaginative flights AB is talking about as far as I've got in the book (despite theatre and literature having been important to her before she was ill).

I did like Basting's "I've got this, I'll remember" approach in the anecdote about her mother. That sort of reassurance is what calms my father. And is hard sometimes when I think "don't trust me to remember, I'm too careless".

Anyway, interested in other people's views.
posted by paduasoy at 12:03 PM on October 18, 2023 [1 favorite]

I have now ordered the book, so will read the rest and comment.
posted by paduasoy at 11:09 AM on October 19, 2023

Oh! Another source for the book is Better World Books, there are used copies for $5.

And paduasoy, I must have overlooked the florid style when I first read it ;-) but I think it just stops being as noticeable (kinda like when a very stylized cinematography recedes from the foreground as the film narrative steps up?).
posted by spamandkimchi at 12:28 PM on October 20, 2023

Reading on, and commenting as I go. I like her thought about self-care - that when we remind the carer of the importance of looking after themselves, we just put another task on to them. "Now caregivers must see to the needs of other people and also to themselves."
posted by paduasoy at 7:15 PM on October 20, 2023 [1 favorite]

The stories of people's engagement are powerful. I've got stuck at the bit where the staff sing to one of the senior staff at the care home provider's HQ though. Also it sometimes gets a bit too cutesy for me - the drawer of sleeping fairies.

I liked the bit about diagnostic questions being sharp-toothed. I have a full day with my father next week of tests - physical and cognitive - and I know he struggles with feeling he's failing the tests. Will mention the phrase to him.

Leaving the book for now, will try to return to it in a few days.
posted by paduasoy at 8:01 PM on October 20, 2023 [1 favorite]

Thank you for doing this spamandkimchi!

I will admit it's my first visit to the purple - the blue and Ask for many years, but never fanfare - thanks for the push!
posted by esoteric things at 8:39 PM on October 22, 2023 [1 favorite]

Hi - just finding this today and have requested a copy of the book from my library. Am at the very early stages of helping my elderly mother plan the next stage of her life and am looking forward to digging in.
posted by tangosnail at 2:54 PM on October 25, 2023 [2 favorites]

Thanks for this. I just downloaded the ebook from my library and am tearing up after reading the first page. I wish I read this when my grandmothers both had dementia... but this is healing to read now, in anticipation for the care I'll need to do for my parents.
posted by AnyUsernameWillDo at 10:38 AM on October 27, 2023 [2 favorites]

These excerpts make me wonder about how we can give ourselves and others the flexibility to not remember but to go on nonetheless, without fixating on what was incorrect or forgotten.

Page 61: In care settings, "Yes, and" [the classic improv game] can feel like a radical act, especially with people who have dementia. "Yes, and" can feel like the exact wrong thing to do. In the first story sessions I facilitated in a Milwaukee adult day center, a staff member warned me that there would be resistance among staff to affirming the reality of a person with dementia: "We're trained not to do this," she said.

When someone with dementia says something that we know is not true, the impulse is to gently correct them, as if a calm recitation of facts can heal a wounded brain. But we can't fix dementia by rebuilding the facts of someone's life brick by brick. All that does is create a brick wall between us. "Yes, and" helps us walk around the wall to find each other in a place where imagination, shared experience and emotional truth can bond us.

Page 62: [About a husband going through a workshop and feeling horrified that he's been doing the opposite of Yes and for the past two years, e.g. "No honey, she's not your sister, this is our daughter." etc etc. Post workshop there were changes!]

He and Carolyn [his wife] used to go for walks in their neighborhood. They would stop at a house and he would say "Tony's house looks nice." But Carolyn would look lost. She didn't know who Tony was. "So I just asked, 'What does this look like? What do you see?' And I realized that we could communicate about a lot of things that she had just a partial memory about."

Their daughter also followed suit: When Carolyn would stare at the ketchup at the dinner table and say, "Pass the..." Katie would simply ask, "What do you want to call it?" "Red sauce." "Then red sauce it us."

Page 63: "Yes, and" affirms the person's reality and gives the person the power to name, shape, and respond to his or her world with the tools that the person has. "Yes, and" teaches and rewards flexibility for both sides of the care partnership.

posted by spamandkimchi at 7:18 PM on November 1, 2023 [2 favorites]

I'm now on the chapter about "beautiful questions." Rather than typing out a bunch of paragraphs, here's Basting on them via an interview:

If you're asking someone, "Do you remember one night when we did this?" Or "Do you remember me and my name?" there's one answer. And when you're dealing with cognitive challenges or any kind of cognitive disability the likelihood that pathway is broken is really high. But if you shift to open the question to what I now call beautiful questions, that opens a shared path of discovery, you've opened a thousand pathways.

An example is, "What is something you treasure in your home and why?" "What is the most beautiful sound in the world? And can you make it?"

It’s this thoughtful, poetic component of unlocking the world. You don't want to have too many cognitive steps in the question but one that appeals to strength, and one that appeals to emotional memory, and that has a playful component as well.

I am having a hard time picturing myself using these kinds of questions with one of my parents, who has always been the more literal, read four newspapers a day, kind of person. But their older sibling has dementia, so it feels quite possible that they would also have a similar trajectory.
posted by spamandkimchi at 2:57 PM on November 5, 2023 [1 favorite]

Oh, and from that same interview:

[Interviewer]: The experience of dementia inspires fear from the moment of diagnosis. We all know the way the story is going to go. The decline, senility, the gradual extinction of what we call personhood. That story is so terrifying to us collectively it's almost paralyzing. Why do you think we're so afraid of dementia?

[Anne Basting]: In Western culture we prioritize cognitive control and we subsume the emotional intuitive experience which is present all the way through that experience you just described. So that is still there, and there's a lot of forms of memory that are still there. But explicit, rational language is what erodes and that's where in Western culture we've put all of our eggs in that basket.

I think about how much emphasis my parents have put on education and knowledge, and how scary it is to have those aspects of self blur. While this book club is for those of us taking care (or preparing to) of parents and other elders, but thinking about dementia and the need for emotional creative expression really does make me want to pick up or return to some non-verbal hobbies. Hmmm... I wonder if the parks & rec department will offer hand drumming classes again....
posted by spamandkimchi at 3:03 PM on November 5, 2023 [1 favorite]

Hello all, just dropping in to see if folks are chugging along in Creative Care the book and to provide a gentle nudge in case this dropped off your radar! Non-reading options that will cover some of the same topics in the book include the podcast or TED talk from Anne Basting that are linked above.
posted by spamandkimchi at 10:35 AM on December 5, 2023

Linked this post in Ask, Podcasts for dealing with early dementia parent, as asker says they may be interested in books too at a later stage. Sorry not to have come back to this post; I'd still like to finish the book, but stuff has got in the way (including problems between my father and another resident in his sheltered accommodation, argh).
posted by paduasoy at 10:54 AM on December 8, 2023 [1 favorite]