“Creative Care” Unlocks Hidden Strengths for People With Alzheimer’s Disease
A MacArthur “Genius Grant” recipient is redefining meaningful connections between people with dementia and their caregivers. During Brain Awareness Month, learn about this radical approach.
By Thomas Vincz, Public Relations Manager
Alzheimer’s disease and dementia are often thought of as illnesses of loss. Loss of memory, loss of language, and a loss of years that families could have spent together.
But when we simply focus on loss, we overlook the many strengths still present in seniors with these conditions and the relationships they can still form in the later years of their lives.
This insight forms the foundation of the work of Anne Basting, Ph.D., MacArthur “Genius Grant” recipient and a professor of theater at the University of Wisconsin-Milwaukee who has spent more than 25 years researching and practicing radical new ways of interacting with older people who have dementia.
In her new book, Creative Care: A Revolutionary Approach to Dementia and Elder Care, Basting explores how caregivers can use creativity to bring joy to and connect meaningfully with those who are experiencing cognitive or memory problems.
Creative care starts with shifting attention from loss to imagination. “If you are speaking with someone who has a cognitive disability and ask them ‘Do you remember that time when we did that thing?’ there’s a neural pathway for that fact that’s fixed and may have broken,” said Basting. “Basically you’re asking that person to demonstrate loss, and everyone in that situation ends up feeling terrible.”
The alternative is to practice creative care. This approach allows seniors to freely share ideas and stories without worrying about getting the details “correct.”
“Instead of looking to the past, what if you asked that person, ‘Where would you go on a trip right now?’” said Basting. “There are a thousand possible answers to that question.”
Connecting with caregivers
Creative care has been shown to improve well-being, relieve stress and promote connections between people. These connections are so important, especially during the COVID-19 pandemic, because “dementia is fundamentally an experience of isolation,” said Basting.
This is true not only for seniors with this illness, who may not have the ability to communicate or live in a nursing home, but for their caregivers too. “Many families no longer know how to act around their loved ones,” said Basting. “It’s easy for them to get overwhelmed.”
It’s estimated that 15 million caregivers in the U.S. give 18 billion hours of their time caring for people with Alzheimer’s disease, sometimes taking a second job to afford the extra thousands of dollars in care. This burden is only expected to grow as the number of people with dementia or Alzheimer’s disease may triple in the next few decades.
Combining simple elements of theater, arts and improvisation, creative care is an approach that can be learned by all. Although many people claim that they aren’t creative, it all comes down to how you define it.
“Creativity is something new you add to the world that has value,” said Basting. That could range anywhere from writing a poem to coming up with a new dinner recipe. “All you need is creative confidence,” said Basting.
In the book, Basting lays out different strategies for engaging people with dementia, such as inviting them to imagine a story or asking them a “beautiful question” – an open-ended query that can be playful and draw on a person’s emotional memory.
On the website of TimeSlips, a nonprofit international alliance of artists and caregivers that Basting founded and serves as president, there are more than 400 projects that seniors and their caregivers can use to inspire creative care.
The most important thing to consider when choosing an activity is that it is meaningful to everyone involved. “Too much programming for people with dementia and Alzheimer’s is either passive or entertainment-based,” said Basting. “We know people with these conditions can still learn. Why shouldn’t you engage them in something interesting? Why must we just have endless games of bingo?”
Finding meaning together
While many doctors and scientists are working hard on treatments for dementia and Alzheimer’s, there is still no cure for these diseases. The research builds hope but can also lead to “cure fatigue,” said Basting.
“We’ve been told there’s a cure five years away for the past 40 years,” she said.
In the interim, creative care works to improve health in other ways. Basting related the story of a chief medical officer of a health care system who witnessed the impact of creative care on a group of people with dementia.
“ 'You should have seen these people’s faces,’ he told me,” said Basting. “ 'There’s no treatment available today that can give that sense of joy.’”
Basting would like to see doctors practice “social prescribing” – combining interpersonal connections and creative engagement – just as they do with prescribing medications.
“As the brain changes and people start to experience these very real symptoms of loss, their caregivers need to know that strength, empathy and meaning are still possible,” Basting said.