As dementia slowly steals people’s memories, caregivers often struggle to make an emotional connection. The Minnesota Historical Society wants to bridge that gap.
The museum is working on a mobile app that will help professional and family caregivers draw stories out of those with memory loss. It also is developing a training program for caregivers, who don’t always know the best way to spark a conversation.
“Dementia is so detrimental to relationships,” said Maren Levad, who is leading the multiyear initiative for the Minnesota Historical Society. “The conversations you’re used to having are no longer; the roles you used to have are no longer. It’s really hard to continue to connect and love the person when you’re changing their diaper, fighting over finances or taking away your father’s independence.”
The app, called “My House of Memories,” will be built by the National Museums Liverpool, which launched a similar program in the United Kingdom in 2012. The Minnesota Historical Society will provide the images and content, and will spend the next year fine-tuning the app and developing training materials. The free software and in-person training programs are expected to be available next fall.
The unconventional initiative stems from the museum’s core mission that all personal stories have value. With a substantial segment of its membership beginning to care for aging parents, the organization is seeking ways to remove barriers to its programs and to stay relevant as the elder boom approaches.
As one of the nation’s largest and most prestigious historical societies, the effort leverages the museum’s substantial archives. But taking a hands-on role to educate caregivers has raised some eyebrows in the museum community for its move into the health and wellness arena.
Yet as Levad fanned out across the Twin Cities and western Wisconsin to talk with those on the front lines of dementia caregiving, she began to embrace a bolder vision for the project. She learned that something as simple as a photograph — delivered with the right context and training — could reduce caregiver stress, bring joy to people living with dementia and possibly reduce some of the challenging behaviors sometimes associated with the disease.
“People don’t realize that the objects that sit around us are just ripe for storytelling and for conversation,” Levad said.
With two grants from the Institute of Museum and Library Services totaling $296,000, the society has spent the past two years working with community-based dementia groups and assisted living centers to test out images and conversation-starters that provide the most impact.
To understand training needs, the museum worked with the Charter House, the Mayo Clinic’s assisted-living center in Rochester, and Twin Cities-based Rakhma Homes. They showed hundreds of images to people with dementia who attended memory cafes and a volunteer-based drop-off program called the Gathering. Levan hired consultants from the black community and other ethnic backgrounds to make sure the images would resonate across many cultures.
Among what Levan and her staff learned: That a simple bicycle might not spark a memory, but showing a kid with his bike definitely would. And that veterans respond best to images specific to their war experience and military branch, right down to drawstring on the duffel bags. She also learned caregivers need more prompts such as suggested questions to spark the conversations.
Carolyn Klaver, a nurse and dementia specialist with Lyngblomsten, a nonprofit caregiver for seniors, said she was impressed with the level of detail and care as Historical Society staff tested out the photos at the Gathering’s six locations that she supervises.
“They weren’t just looking for images,” she said. “They were looking for images that would truly inspire and bring up authentic conversation.”
With 5.5 million Americans now living with Alzheimer’s disease, and the number expected to triple by 2050, advocates said there’s a growing need to support both formal and informal caregivers. Technology holds great promise in this arena.
“In our classes, we talk about the importance of knowing the person you’re caring for — their leisure preferences, their occupations — because it can help you be a better caregiver,” said Katie Roberg, a program and education manager at the Alzheimer’s Association of Minnesota and North Dakota. “You can better refocus and say, ‘Hey Shirley, I know how much you like fishing. Let’s go see if we can catch some fish.’ ”
The challenges are equally tough for volunteers at adult day programs or paid staff at nursing homes, where the state requires only four hours of training to be able to work one-on-one with people with dementia. The lack of available workers and low pay contributes to high turnover and burnout.
“We’re training them what to do if someone yells or hits you, and how to help them brush their teeth and go to the bathroom,” Levad said. “They’re not learning how to meaningfully connect with another human being and how that might make basic care easier.”
Within a few years the Historical Society will bring on museums around the country to supplement the online images collection and to host workshops in their communities. Levad hopes that broader adoption of the museum’s free software, combined with in-person training, can start to inspire deeper changes in the way the elderly and people with mental decline are cared for.
Klaver believes the approach has potential. “This could be used by families taking care of loved ones, by volunteers going into homes, by professionals, or by the daughter in California who’s having a hard time relating to Dad,” she said. “We have to create an environment where these folks are cherished again.”