Living with dementia is already part of everyday life for over a million Canadians.
According to the Alzheimer Society of Canada, more than 540,000 people in this country live with a diagnosis, and an almost equal number are impacted indirectly – many as family caregivers.
“Dementia is complex and doesn’t typically fit with the traditional ways we provide health care,” says Holly Symonds-Brown, assistant professor, Bachelor of Science in Nursing. “We know hospitals aren’t good places for people with dementia, but keeping people at home for as long as possible has its own set of challenges.”
Often cited as the answer, day programs provide opportunities for older adults with dementia to stay active and socialize – and offer respite for family caregivers. But the reality is that not a lot is known about if, or why, these programs work, and the way they impact quality of life for people with dementia and their caregivers.
Holly Symonds-Brown is working directly with families of people who have dementia to look at connections between their experience at home and in day programs.
“The research on day programs tends to focus on the programs themselves, and doesn’t acknowledge that there are a lot of ways that families need to work to make these services fit into their lives,” says Holly. “If we’re trying to keep people with dementia at home for as long as possible, we need to look at the things that make life easier or harder.”
This summer, Holly is beginning a study that she hopes will help us rethink the way we look at care and space. Working directly with five families, she is exploring the back-and-forth connection between a person’s experience at home and their experience in a day program.
“I’m asking families to let me be part of their daily practices,” she explains. “To observe what happens at home before and after they attend a day program, to look at their spaces, to see how they get to the program, what they do when they get there and the paperwork that materializes in different places along the way.”
It’s a long study and slow research – Holly anticipates that field work will take at least nine months – but it will offer a different perspective on quality of life than the biomedical approach to dementia research.
“Ethnographic research is about thick description,” says Holly. "I really want to see and hear about the mundane things – eating breakfast, getting ready – and how those things may or may not be different on the days they go to the day program.”
That type of information, says Holly, can help drive innovation.
“We haven’t really had access to this type of information before, and that means we might see things that we haven’t been able to pay attention to because of the methods that were used.”
Ultimately, Holly’s research is to start identifying innovative ways to help people with dementia live the best life possible.
“Instead of focusing on a grey tidal wave, we need to start thinking creatively about how we can help people with dementia live good lives,” says Holly. “Because when we make the world better for people with dementia, we make it better for everyone else too.”
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