A Search For Meaning
“When someone is given a diagnosis of dementia, we sometimes lose sight of them as a person,” says Candace Kemp, professor of gerontology. “Frequently, emphasis is placed on lost abilities rather than how they can still find purpose or make their voice heard.”
Yet Kemp says that meaningful engagement is not only possible for people with dementia, it’s critical to maintaining quality of life. It’s also a huge unmet care need.
Kemp and her collaborators in the university’s Gerontology Institute received more than $3.3 million last fall from the National Institute on Aging to research the best ways to help assisted-living residents with dementia be optimally engaged in life. They hope to uncover general principles that can be personalized and adapted for different settings beyond assisted- living communities.
“What’s meaningful to you might not be meaningful to me and vice versa,” Kemp says, noting that there are some studies that suggest meaningful engagement is also a potential avenue for addressing anxiety, agitation and aggression in people with dementia. “These behaviors are all forms of communication. If bingo is not your thing, and someone is trying to make you do it, that could spark or worsen agitation.”
Over the next five years, Kemp and her research team will study the routines and engagement patterns of 75 individuals in 12 assisted-living communities and personal care homes across the metro Atlanta area. To gain insight into a range of experiences, they will choose a resident sample that is diverse in terms of age, sex, type of dementia, type of care partner, and cognitive and physical ability. The group will interview residents when possible, along with family members, staff and others who are involved in engagement in the community, such as volunteers or hospice workers.
At the end of the study, Kemp hopes to define best practices for meaningful, person-centered physical, social and emotional engagement and provide guidance for how to promote it across various settings and functional abilities.
“The goal is to produce something that is useful not only for care providers but also family members,” says Kemp. “Sometimes people find it hard to communicate with those who have dementia, and as a result they struggle to connect. I hope we’re able to come out with strategies that care partners can use to create meaningful experiences.”
Photo by Meg Buscema