Creative Care: A Better Way for Alzheimer’s/Dementia Patients and Their Caregivers to Thrive Together
John F. Thompson, CPWA?, CIMA?
As a Private Wealth Advisor, I help highly successful Business Owners, Professionals and their Families work towards making "work" optional so they can focus on their life of meaning
Key Takeaways
Everyone ages. Unfortunately, for many of us, that journey will be accompanied by a considerable loss of physical abilities and cognitive function—in other words, dementia.
At first, mental losses and lapses may seem almost endearing—more of an amusing nuisance than a serious problem. But when Alzheimer’s or other age-related dementia sets in and worsens over time, it becomes anything but funny. From confusion and disorientation to loss of memory, speech and the ability to physically take care of oneself, dementia takes a terrible toll.
One of the most painful outcomes for people experiencing dementia is the loss of existing connections with friends and family members. Because interacting with affected individuals can be fraught with emotion and frustration, many simply pull away.
Fortunately, there are steps we can take to help both those suffering from dementia and ourselves navigate the challenges of staying connected. It turns out some of the best methods stem from the world of art and performance. So says Anne Basting, PhD, a professor at the University of Wisconsin who won a 2016 MacArthur (“genius”) Fellowship for her work on using storytelling and creative expression to enliven and sustain emotional connections with those with dementia.
Her insights can potentially help those of us caring for family members with dementia, as well as those of us who may very likely be called on to do so in the years ahead.
A growing trend with outdated responses
Chances are good that at some point, in some way, you will come face-to-face with dementia. Consider the numbers: Currently, there are over 5 million Americans (and over 50 million people worldwide) with Alzheimer’s-related or other dementia, according to Alzheimers.net. By 2050, these numbers are expected to roughly triple. The nonprofit Alzheimer’s Association tells us that 1 in 3 Americans dies with Alzheimer’s-related or other dementia each year—in fact, dementia kills more people annually than do prostate and breast cancer combined.
It can initially be quite difficult, unsettling and challenging to experience someone—especially someone you know well or love—losing his or her memory, speech and other abilities.
But the societal challenges we face here go beyond increasing incidence rates and the terrible toll on individuals and families. Substantial stigma and denial often accompany Alzheimer’s and dementia. Simply put, it’s a frightening topic for many people—and that fear too often results in a lack of new ideas and approaches in communicating and working with people with dementia.
Research and experience show that cognitively stimulating therapy has beneficial effects on memory, thinking and well-being generally for those with these conditions. It’s also widely agreed that interactive stimulating activities lessen anxiety and irritability, both elevating mood and preventing depression.
That’s probably why Basting believes that in far too many elder homes and care facilities—even well-run ones—people with dementia are “treated” with what she calls “numbing, one-way” activities such as Bingo or coin toss. Similarly, those who remain at home and are cared for by family members often spend far too many hours every day mindlessly watching TV to pass the time. While watching television can be enjoyable, informative and relaxing, it can also be problematic if it is overused or if the content becomes upsetting.
Adopting a ‘creative care’ approach to communication
Enter Basting’s “Creative Care” approach to working with people with dementia, which is based on the concept of meaningful joyful connection fostered by shared creative expression. Creative Care asks family members and other caregivers to be open to the idea that everyone has stories inside of them and can be helped to express those stories—regardless of how much their level of functioning may have declined.
The approach is rooted in four key principles:
Basting tells one particularly powerful story of an elderly man who lost his speech but was able to powerfully and creatively respond to a simple question: “Can you show me how water moves?” The man, who had not spoken in months, picked up a piece of driftwood and began animating it. For 20 minutes he made different pieces of driftwood appear buoyant and real, floating flowing vessels that he moved and danced with, bringing delight to himself and all those present.
Basting notes that by using Creative Care to connect with dementia patients through stories, the arts and what can be thought of as “improvisational creative engagement,” we can accomplish two things:
We can bring beauty, growth and joy into the lives of those experiencing dementia.
As caregivers, we can experience the joy, wonder and awe that come from the connections and expressions we’ve fostered—thereby recharging ourselves as well and knowing that we are finding ways to stay a part of an affected family member’s world.
Put differently, whether we are working with those suffering from dementia at home or in a facility, three sorts of benefits occur. First, from the perspective of the person with the condition, the beneficial effects of cognitive stimulation and caring interactive communication can help delay further mental decline while improving mood and forestalling depression. Second, from the perspective of a family member (or a facility caregiver), creative engagement can bring forth genuinely meaningful experiences that yield poetic and beautiful moments. Third, as caregivers, we get to know we have done our best—to the degree possible—to help slow cognitive decline while becoming or staying as emotionally connected to the individual as possible.
Creative Care principles and practices
So how can you and other caregivers implement this approach and bring it to life? In terms of specific action steps and practices, consider the following:
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1. Yes/And
Creative Care springs from the arts—in particular, from improvisational theater—which makes great use of the “Yes/And” construct. If someone in your world with (or even without!) dementia forgets a name, fact or how to do something simple, or otherwise makes a mistake, try taking a “Yes/And” approach rather than making them wrong.
When you make someone wrong, you deflate and de-energize them, and can damage your connection. If a dementia patient offers that she was once married to Mick Jagger, instead of correcting them, say, “And what was that like?”
Here, facts and reality don’t matter as much as imagination and connection. Basting notes that trained staff members at care facilities sometimes resist this approach; they note they are trained to do the opposite and don’t want to worsen any delusions. But the Creative Care approach holds that if you try to rebuild the facts of someone’s life brick by brick, all you end up with is a brick wall separating them from you. Instead, Yes/And helps patients and caregivers get around that wall so they can meet and bond through shared imagination, shared experience and connected emotional truth.
2. Beautiful questions
Beautiful questions are open-ended inquiries meant to spur the imagination, foster creativity, and open a pathway to shared discovery, meaning, wonder and awe. They have no yes-or-no or right-or-wrong answer. And instead of relying on memories of specific occurrences or facts—which dementia sufferers often can’t access—they center on the imagination. By shifting us away from memories and facts and into the imagination, an unlimited number of correct responses can be made to the same beautiful question. That, in turn, opens the door to more potential connections between you and the person with dementia.
Some examples of beautiful questions include:
A very powerful word related to beautiful questions is “imagine.” Instead of asking someone to remember something, ask them to imagine it, and then ask a beautiful question about what they’ve imagined.
3. Acting things out
Acting things out physically, with or without props—like the above-described man who utilized driftwood to show how water moves—can be very powerful and freeing. Inviting a person with dementia to act in this way can empower him or her to safely express a wide variety of ideas, concepts and possibilities—from showing you how something works to how it feels to how the person would like to make it work even better. This not only potentially enables better connectedness, but also conveys helpful and actionable information.
Conclusion
Helping those with dementia express themselves and communicate creatively won’t cure the problem. But it can potentially help keep them more mentally and physically active and engaged as they navigate one of life’s most difficult roads. And it can help family members maintain connections to loved ones who might otherwise slip away entirely.
Ultimately, it can bring value, meaning and wonder to people and places that otherwise may have all but abandoned hope.
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