Museums Fight the Isolation and Pain of Dementia
Posted March 15, 2018 12:39 a.m. EDT
An assisted-living facility in Liverpool, England, was confronted with an unusual dilemma in 2013: An elderly resident with severe dementia suddenly became terrified of water and showering — and categorically refused to bathe.
“His demeanor and his well-being started disintegrating. It became socially unacceptable,” recalled Carol Rogers, executive director for education and visitors at National Museums Liverpool, a complex of eight cultural venues that developed and now operates a dementia program. “The other older people didn’t want him in the day room. It wasn’t pleasant for them, and there was a loss of dignity for him.”
When the museums were contacted for advice, they offered one of their memory-stimulating suitcases: one that was linked to bathing. Inside was a bar of strong-smelling carbolic soap, a kind widely used during the war years.
“It evoked a very strong memory for him, of sitting in front of the fire at bath time,” Rogers said. “They got him to bathe with it and managed to get him integrated back into the community.”
That suitcase is one of about 40 that have been devised as part of House of Memories, the Liverpool Museums’ multipronged dementia program, which just celebrated its fifth birthday. The program also has its own app, offers training days for caregivers and family members, and memory walks, hourlong guided tours of the Museum of Liverpool devised to get older visitors to share their memories of life in the city.
The suitcases cover 1930 to 1980. Themes include transportation, the natural world and ethnicity; for example, Irish and Afro-Caribbean people are among the groups represented. One suitcase contains items like flyers from early Gay Pride marches and club nights; photos of venues in the 1950s, ‘60s and ‘70s; and a pair of brown suede Hush Puppies, which some gay men wore to spot each other at a time when homosexuality still had not been decriminalized in Britain.
Backed by the British government and by state-funded British health care partners, House of Memories has now trained more than 12,000 people nationwide, and is crossing the Atlantic: The Minnesota Historical Society plans to offer its version of the app in the fall.
The idea first came to Rogers as a way of “supporting our aging society,” she said. “Globally, we’re all living longer, and we all want to live well, but there are older people in our community who are socially isolated,” she said. “They’re lonely.”
Among them, people with dementia are particularly isolated, she said, and museums with recent collections could help. Photographs, memorabilia and objects — be they the actual items or images of them on apps — help rekindle memories in people with dementia and lead them to start conversations.
Rogers also had a personal motivation. Her mother “had a stroke many years ago,” at age 70, “and she had memory loss problems and couldn’t communicate,” she recalled. “For 10 years, we struggled as a family to connect with her.”
She teamed up with colleagues to start a dementia program, seeking input from local caregivers, doctors and nurses, then tried it out with her mother, Margaret. “I knew by her eye contact, by her squeezing of my hand, that she gained great pleasure from having that experience,” Rogers said. “It was interactive, it was personal. It got right to the hub of Margaret’s life story.” The next step was to offer the objects, narratives and experiences to dementia sufferers digitally, via an app. It was tested with people who had dementia, as well as caregivers and families. Eileen Gilbert, whose 83-year-old husband, Dave, was found to have Alzheimer’s four years ago, was part of the app focus group.
When Dave Gilbert’s dementia was diagnosed, “it was a shock to us all,” she said, referring to her three children, all in their 50s. Even before the diagnosis, she sensed that something was wrong. “There were silly things that he would forget,” Eileen Gilbert said. “He would say, ‘Is one of the children coming home from school?'”
The tablet-based app offers an array of themes, and Dave Gilbert chose images of 20th-century Liverpool: the cinemas, the Blacklers department store with the rocking horse at the top of the stairs, the Punch and Judy puppet show.
“Now, I can put the tablet on for Dave, and he can sit there and press the different things,” she said. “It’s fascinating watching him: He recognizes things on it.”
“It’s kept Dave active, and that helps me,” she added. “He feels as though he’s still doing something.”
In Minnesota, Maren Levad, a museum access specialist at the historical society, said that when her organization decided to extend its new dementia program statewide, it looked for programs and found Liverpool’s instantly appealing.
Caregivers in Minnesota, she said, needed tools for “meaningful, person-centered engagement,” and “this is something House of Memories does brilliantly.” The program’s other attraction was “its clear connection to museum resources: using the collections to service the public.”
Seeking a partnership, the historical society — whose dementia program is based in St. Paul — contacted House of Memories the very week of the app’s launch. Thanks to funding from the Institute of Museums and Library Services in the United States, the Minnesota society is now the program’s national headquarters.
The app is being tailored to the United States in a number of ways. One is an increased focus on African-Americans, who are twice as likely to receive diagnoses of Alzheimer’s, “have a very different experience navigating our health system, and different cultural expectations when it comes to caring for elders,” Levad said.
In Liverpool, next on the agenda is exploring options around augmented reality, Rogers said: using digital technology to recreate 3-D object experiences on the screen. “There’s a great opportunity there to take objects and experiences into people’s homes in a different way,” she said, noting that they were heading into uncharted territory. “This is our ambition.”