I’m always searching for new ideas that could improve the lives of families affected by dementia. But I was stunned to discover there are whole towns working to become dementia-friendly. A warm embrace of dementia is the opposite of what we usually find as we strive to keep our loved ones feeling loved.
Henning Pond at Twilight
Unlike the other zillion towns in America, Watertown, WI is on a quest to train its 24,000 residents in ways to support people with dementia when they come across them. This concept extends as far as teaching servers in restaurants to recognize gestures from people instead of forcing them to choose from a jumble of words like small, medium, or large. Businesses involved in the project display a purple angel on their window.
What an amazing trend! Many times I’ve been in situations where people recoil at the mere sight of a dementia patient with chaotic movements or halting speech. The situation is just too different for them and they find it easier to look away or leave in panic. At some level, I understand their fear. It takes time to get used to the company — and the needs — of someone who’s really been impaired by the disease. But I also know that for every person who has avoided our mobile chaos, there have been many waiters, cab drivers, and medical professionals who were extremely sensitive to the needs of my mother and other people like her. Those people seem to come alive in situations where they get a chance to show compassion or help out.
Before you pack up your suitcases and move to Wisconsin, you might want to do some research on other places engaged in similar efforts. An article in the January/February AARP Bulletin by Elizabeth Agnvall describes dementia sensitivity projects underway in other U.S. towns and some European countries. I love the article’s quote from Jan Zimmerman of Heritage Homes, which launched the Watertown initiative. Jan says, “We have to get rid of this fear of admitting that ‘I’ve got dementia’ or ‘My loved one has dementia’….we’re hoping to raise awareness so this is not something that hides in the closet.”
Ideas that reduce stigma move us in the right direction. But as long as a community is training its members to be kind to people with dementia, how about also educating people to be kind to caregivers? Imagine a cafe where the workers immediately notice your tired eyes and frazzled demeanor. They don’t act impatient when you don’t order right away — because you’re trying to remember if the drugstore with discount Depends and quick prescription service is open until 6:30 or 7 pm. Instead of rolling their eyes, they give you a piece of chocolate — or a wheat grass shot — and say, “It’s okay, take your time. Everything’s gonna be fine.”
Some people take on the role of caregiving when it doesn’t really suit them. I’ve seen staff members in care facilities who don’t understand the needs of people with dementia. In families, we can also be blockheads. Stress makes us gruff or impatient, and that helps no one.
On a recent visit to my mom’s activity program, I watched an aide cleaning up after lunch. She was angry at someone — could have been a staff member or someone with dementia — but it made no difference. Plates were flying into a basin, crashing into each other. Knives and forks clanged as she threw them. Noise like that upsets people who are impaired and sensitive to the slightest emotional rupture. I don’t know what this woman thought she was accomplishing. But the whole show was wrong for a setting where dementia patients were trying to transition from a meal to a group activity. If she had been a bratty teenager, you could banish her to her room. But these were the actions of an employed adult. Could better job training change this?
One of the most exciting elements of the recent New Yorker article, “The Sense of an Ending”, was its explanation of how one care facility revolutionized its approach to staff training. Dementia caregivers were asked to put themselves in the place of their patients. They “spooned food into each other’s mouths and brushed one another’s teeth….to be on the receiving end of activities that they performed for their charges every day.” After these experiences, the education director at the care facility said, “You can feel how threatening it is to have something touch your mouth when you have not brought it to your own lips.”
This comment has lingered with me. Sometimes when I feed my mom, I think something is cool enough for her to eat and believe she’s being difficult if she refuses it. Now I think more about how shocking a warm — or cold — spoon might feel if you can’t see it coming. I’ve also been guilty of trying to get her to eat faster when I’m busy. But she needs extra time to chew and swallow. Since she has no control over the other parts of the dining process, maybe slow eating is the only way she can retain some ownership of her meals.
I’m trying to stop more often and put myself in Mom’s shoes when helping her with intimate tasks. But how do you get poorly paid caregivers with minimal training to show that kind of sensitivity at work? Most of us spend our lives doing unto others what has been done to us. Now and then we are wise enough to add a bit of learned behavior to that basic recipe. But given the numbers of people likely to develop dementia in the coming decades, I think our society needs to require that Adult Day and Residential Care programs hire staff who have (at least) completed a Certified Nursing Assistant program and show sensitivity to the needs of those they help. Better training would improve the quality of care for dementia patients and might give family caregivers who rely on these services more peace of mind.