Kathleen Schmidt can’t remember how to walk. His ability to speak has almost disappeared. And she forgot that nearly 50 years ago she married the man who spends practically every afternoon with her.
“But whoever she thinks I am, she likes me,” says her husband, Jim Mangi. “And it lights up when I walk in the room.”
Schmidt, 74, was diagnosed with Alzheimer’s disease in his late 50s. In 2016, the two moved to an elderly community, where Kathleen now receives professional help at the community’s Memory Support Center.
In addition to caring for Kathleen, Jim, 75, runs Saline solution suitable for dementia, a nonprofit organization in Saline, MI, that aims to help people with dementia live in their communities with less hardship and more dignity. He is also a volunteer educator for the Alzheimer’s Association.
Its goal: to empower people with dementia to use their imaginations and current abilities so that they and their caregivers can learn from each other, have fun, and feel valued in the community.
Alzheimer’s disease and other forms of dementia cause many changes and complications. Even so, the game can bring joy and meaning to those with memory loss, says Anne Basting, PhD, founder of TimeSlipsa nonprofit group that trains caregivers and care systems to harness the creative abilities of older adults until the end of their lives.
“These are people who have lived full lives,” Basting says. “And powerful things come out of those improv sessions. It’s really poignant, sharp and hilarious.
Arts-based programs like TimeSlips can improve the quality of life for people with varying degrees of dementia, research shows. It is also rewarding for carers, loved ones and carers.
Marla Cattermole, 64, works for the Dauphin County Library System in Harrisburg, PA. As part of her awareness-raising activities, she hosts storytelling events in long-term care centers. TimeSlips is just a small part of his work, “but it’s the thing I’m looking forward to the most,” says Cattermole.
First, she gives everyone a picture, usually showing children or animals. These images tend to be the most engaging and likely to trigger memories of long ago, Cattermole says, even if remembering the past isn’t the goal.
Then she asks the group to tell her what is happening in the photo. What could they smell and hear in this scene?
Cattermole assures everyone that there is no wrong answer and gives everyone a chance to answer. Even when people say something that seems totally out of place, says Cattermole, it still goes down in history.
From time to time, she will stop and read the story again. “Some people get really animated,” says Cattermole, “and they’re so much fun.”
One of the things Mangi does through his non-profit organization is host a “memory cafe”. It’s an event, not a real cafe like a cafe. Jim calls his memory cafe the “Come As You Are” cafe, twice a month in the social hall of a local church.
At a recent memory coffee, Jim’s group used a TimeSlips photo of a tall man playing the violin next to a short guy dressed in green, with a jar of coins in the distance.
Here is an excerpt from the story told by the group: A man named Frank lost a bet with a leprechaun. Frank made the bet because his daughter was sick and he had to take care of her. They are interrupted by a group of gnome cousins.
The story starts from there.
“It’s so beautiful to see people with dementia, some of whom aren’t particularly vocal otherwise, really get into the story and offer their input as to what happens next,” Mangi says. “They feel respected for the abilities they still have rather than neglected because of the abilities they have lost.”
This can reduce the daily confusion of people with dementia by limiting their choices. For example, do they want a ham sandwich or a mac and cheese for lunch? Do they want to go for a walk or watch television this afternoon?
But closed questions may not trigger meaningful moments. This takes a different approach.
Basting uses what she calls “beautiful questions,” which are open-ended prompts with no right or wrong answers where it’s okay to make things up. For example:
- What advice do you wish someone had given you?
- What do you hear?
- If you had the ability to fly, where would you go?
- What superpower do you want?
You can add another artistic activity, like inviting 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 cinema to host special screenings. Movies such as Sing in the rain play with the lights on and the sound muted. Mangi encourages everyone to have fun. Some people clap, sing, sway in their seats, or stand up and dance.
“We have food, we have door prizes. It’s a big event,” says Mangi. “One woman said it was so good to see her husband feel visible again. A grown daughter said her mother had the best time of her life because she felt like she belonged there.
You can find social events for people with memory loss through resources such as:
- Memory cafes in your area with online or in-person meetings
- Creative care communities via TimeSlips.org
- Local libraries or arts and culture centers
- The spark! Alliance
- Spry Company (from the Alzheimer’s Association)
For more ideas and resources at home, visit the Creativity Center on the TimeSlips website.
The next time Mangi sees Kathleen, he won’t ask her to remember him. He will take her for a walk outside in her wheelchair if the weather is nice. Inside, he can crank out his favorite Motown classics or put on a “very over-the-top and colorful” musical like red Mill Or The sound of music.
Whatever they do, Mangi appreciates any opportunity to enjoy Kathleen’s company a little longer. He celebrates her without focusing too much on the abilities she has lost. He says it deepened his relationship with his wife.
“I helped her get dressed and clean up the mess and stuff,” Mangi says. “But what a small price to pay to be so much closer, so much more in love with my best friend.”
Related: A better daily life for a loved one with Alzheimer’s disease