Kathleen Schmidt doesn’t remember how to walk. Her ability to speak is almost gone. And she’s forgotten that, almost 50 years ago, she married the man who spends virtually every afternoon with her.
“But whoever she thinks I am, she likes me,” her husband, Jim Mangi, says. “And she does light up when I walk in the room.”
Schmidt, 74, was diagnosed with Alzheimer’s disease in her late 50s. In 2016, the two moved to a senior living community, where Kathleen now gets professional help in the community’s memory support center.
In addition to caring for Kathleen, Jim, 75, runs Dementia Friendly Saline, a nonprofit in Saline, MI, that aims to help people with dementia live in their communities with less difficulty and more dignity. He’s also a volunteer educator for the Alzheimer’s Association.
His goal: empower people with dementia to use their imagination and their current capabilities so that they and their caregivers can learn from each other, have fun, and feel valued in the community.
Alzheimer’s and other forms of dementia bring many changes and complications. Even so, play can bring joy and meaning to those with memory loss, says Anne Basting, PhD, founder of TimeSlips, a nonprofit group that trains caregivers and care systems how to tap into the creative capacities of older people all the way to the end of life.
“These are people who’ve lived a full life,” Basting says. “And powerful stuff comes out of these improvisational sessions. It is really poignant and pointed and hilarious.”
Arts-based programs like TimeSlips can boost quality of life for people with different degrees of dementia, research shows. It’s also rewarding for caregivers, loved ones, and care workers.
Marla Cattermole, 64, works for the Dauphin County Library System in Harrisburg, PA. As part of her outreach, she leads storytelling events at long-term care centers. TimeSlips is only a small part of her job, “but it’s the one thing I look forward to the most,” Cattermole says.
First, she gives everyone a picture, usually showing kids or animals. These images tend to be the most engaging and likely to trigger long-ago memories, Cattermole says, even though remembering the past isn’t the goal.
Next, she asks the group to tell her what’s going on in the photo. What might they smell and hear in that scene?
Cattermole assures everyone there is no wrong answer and gives each person a chance to respond. Even when people say something that seems totally irrelevant, Cattermole says, it still goes into the story.
Every now and then, she’ll stop and read the story back. “Some people get really lively,” Cattermole says, “and they are so much fun.”
One of the things that Mangi does through his nonprofit organization is to host a “memory café.” It’s an event, not an actual café like a coffee shop. Jim calls his memory café the “Come as You Are” café, twice a month at a local church’s social hall.
At a recent memory café, Jim’s group used a TimeSlips photo of a large man playing a violin next to a small guy dressed in green, with a pot of coins in the distance.
Here’s a snippet of the story the group spun: A man named Frank lost a bet with a leprechaun. Frank made the bet because his daughter was sick, and he needed to take care of her. They’re interrupted by a group of gnome cousins.
The tale takes off from there.
“It’s so beautiful to see persons with dementia, some of whom are not particularly vocal otherwise, really getting into the story and coming up with their contribution as to what happens next,” Mangi says. “They feel respected for the abilities that they still have rather than neglected because of the abilities they’ve lost.”
It can lessen everyday confusion for people with dementia to limit their choices. For example, do they want a ham sandwich or mac and cheese for lunch? Do they want to take a walk or watch TV this afternoon?
But closed questions may not spark meaningful moments. That takes a different approach.
Basting uses what she calls “beautiful questions,” which are open-ended prompts with no right or wrong answer where it’s OK to make things up. For instance:
- What advice do you wish someone had given you?
- What do you hear?
- If you had the ability to fly, where might you go?
- What superpower do you want?
You can add another artistic activity, such as prompting them to draw themselves as a superhero or playing music and asking them to sing along or add their own sound.
Mangi also partners with a local movie theater to host special screenings. Films such as Singing in the Rain play with the lights on and the sound turned down. Mangi encourages everyone to have fun. Some folks clap, sing along, sway in their seats, or get up and dance.
“We have food, we have a door prize. It’s a big event,” Mangi says. “One wife said it was so great to see her husband feel visible again. An adult daughter said her mom had the time of her life because she felt like she belongs there.”
You may find social events geared toward people with memory loss through resources such as:
- Memory cafés in your area with online or in-person meetings
- Creative Communities of Care through TimeSlips.org
- Local libraries or arts and culture centers
- The Spark! Alliance
- Spry Society (from the Alzheimer’s Association)
For more at-home ideas and resources, visit the Creativity Center on the TimeSlips website.
The next time Mangi sees Kathleen, he won’t ask her to remember him. He’ll take her for a stroll outside in her wheelchair if the weather is nice. Inside, he may crank up her favorite Motown classics or put on a “very over the top and colorful” movie musical like Moulin Rouge or The Sound of Music.
Whatever they do, Mangi appreciates any chance to enjoy Kathleen’s company a little longer. He celebrates her without focusing too much on the abilities she’s lost. He says it’s deepened his relationship with his wife.
“I’ve helped her get dressed and cleaned up messes and all that,” Mangi says. “But what a small price to pay for getting so much closer, so much more in love with my best friend.”