New research from Penn State and the Benjamin Rose Institute on Aging finds that caregivers of people with dementia are not listening to what the people they care for want.
The researchers interviewed 256 pairs of people. In each pair, one person had mild to moderate dementia, the other was the caregiver.
The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.
“Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values,” said [lead researcher Steven] Zarit. “For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not.”
So the caregivers/decision makers aren’t taking into account what the person with dementia values. That’s really sad.
A few years ago I helped write a book titled I Can Still Laugh: Stories of Inspiration and Hope from Individuals Living with Alzheimer’s. My expert co-author was Audette Rackley at the Center for BrainHealth, part of the University of Texas at Dallas (my alma mater, and a current writing client).
The book is based on an intervention called cognitive stimulation, a dry academic name for something rich and human. The intervention supports things the person with dementia can do at any time, rather than trying prop up declining abilities. Helping people with dementia remain productive and connected helps mitigate the disease’s damaging byproduct: depression.
I Can Still Laugh focuses on a group of people with early-onset Alzheimer’s or other form of dementia. The group—mostly men, all professionally successful, all diagnosed in their 50s and 60s–called themselves the Stark Club, for their most dynamic member, whose donation also supported the research. Temple Stark was a loving guy with a big laugh and a sunny attitude who was diagnosed when he was 54 years old, a father of two teenage daughters at the peak of his career as an insurance underwriter. The book’s title is a quote from Temple.
Audette worked with individual Stark Club members and their caregivers, helping identify each individual’s cognitive strengths and how best to use them. Temple, for example, retained an ability to read for a long time, so once a week he read to kids with hearing disorders. (“It’s perfect,” he joked, “Because I can’t read and they can’t hear.”) Delbert Duncan had been an executive at a large grocery chain, so his family took him to deliver Meals on Wheels and help out at a community outreach center, where he enjoyed interacting with a low-income Hispanic community he had served as an executive.
The Stark Club met monthly. They sat around a table in a conference room at CBH and either Audette or a grad student moderated discussions on everything from history to contemporary pop culture. Conversations were paced to whatever level the participants were able to manage. Sometimes members would initiate discussions. Bill Crist, who indignantly fought his Lewy Body dementia, often brought in articles he found about dementia and explained them to the group, with varying degrees of success.
As a hired-gun writer with no experience with dementia, I was nervous before my first Stark Club meeting, but it felt like walking into a particularly genial and welcoming board meeting. This was a high-functioning group and the meetings were fun. The conversations were lively and full of laughter. They might wander off track, and there were confused moments and occasional raspberries blown, but things always got nudged back.
Stark Club meetings were the only time when these men and women weren’t the odd ones out. They were socioeconomic peers and high achievers who connected quickly. They got to know each others’ cognitive quirks, helped each other out; kindly Bill Crist would try to help Bob Eshbaugh, who had semantic dementia, get his points across. More than most people, Stark Club members recognized the difference between the person and the dementia. And being in a room with people who expected more, not less, of them was energizing and enlivening.
While the Starck Club met in one room, their caregivers waited together in another, forming their own strong bond. The couples all connected. They had parties. Some took vacations together. They had fun.
In I Can Still Laugh, Audette and I profiled thirteen members of the Stark Club and their individual challenges. I don’t pretend to know a lot about dementia, and can only begin to imagine the challenges of loving and caring for someone who has it. To write the book, Audette and I interviewed all the caregivers, and a few of the people with dementia . I went to many Stark Club meetings and a few parties. The rest came from Audette, who had the front-row seat.
Nevertheless, the people I met doing the book left a deep impression. I think fondly of them, and more often than you might imagine, considering we finished the book five years ago. The Stark Club taught me a lot about the human experience, and the lessons are meaningful beyond dementia. After all, if you take away our rational expression of thoughts and emotions, you are left with something essential about our need to be connected and understood.
From the Stark Club I learned that more often than not, no matter how garbled the communication, the emotion behind it is real. For a long time Bob Eshbaugh compensated for his declining verbal abilities with catch phrases: “Only in America,” “Just move on” and “You got that right.” With these, he could throw in his two cents, and context communicated his message. And when his verbal abilities were gone, his wife, Marie was still able to factor his desires into the apartment they would move in so they could downsize. Some apartments just made him look “forlorn,” she said.
And when we meet people where they stand, we can relate to them in ways that matter. Temple loved people. He was gregarious and a raconteur and even after he started his cognitive decline, friends enjoyed his company. His friend Greg Lafitte had a joking, silly friendship with Temple that continued beyond the diagnosis. “We go to lunch now and spend the entire time laughing our butts off,” Gregg said. “The subject matter makes no sense and a third party observer would think we had both lost our marbles, but the important thing is what remains: his humor and appreciation for life and what he gives me—himself, open and honest.”
The Penn State research makes me wonder whether other caregivers know what the Stark Club taught me: That if you slow down and pay attention, and don’t rush towards the sad finish line, there can be lots of life after a diagnosis of dementia. I learned something else from the Stark Club: Appreciate today because in six months or a year you’ll look back and realize that these were better days.
Members of the Stark Club have all passed now. That’s where dementia goes. I wouldn’t wish it on my worst enemy, and caregiving is a relentless and often thankless chore. Let’s be honest: a book of Inspiration and Hope from People Living With Alzheimer’s has been a hard sell. People dealing with dementia are pretty low on hope. I get it.
Still, it seems that listening to people with dementia and helping them live to their fullest can stave off some unhappiness. And by doing that, caregivers can provide their loved ones with joy through their waning awareness, rather than sentencing them to a suddenly constricted world.
(Note: I Can Still Laugh is available on Amazon, I don’t make any more money on it. It all goes to support research at the CBH.)