Helping people with dementia stay engaged: what works, what doesn't
It's distressingly easy for someone with dementia to stop being active in their community and lose their sense of well-being. It comes from being deprived of what researchers call "social citizenship."
But groups are springing up in various parts of the country that aim to help people with dementia become more engaged and better able to participate in their communities. More social club than support group, these gatherings are often informal and unaffiliated with the health-care system.
"They’re totally operating under the radar and with very little funding," says University of British Columbia nursing professor Alison Phinney. "And they are doing amazing work."
While such groups are becoming more common, there has been almost no research examining their impact, "especially from the perspective of group members themselves," says Phinney. With money from the Alzheimer Society Research Program, she means to evaluate these groups and find out exactly what activities and approaches work.
Cultivating social engagement
Phinney is teaming up with another nurse, a social worker, a speech-language pathologist and a gerontologist to conduct in-depth evaluations of two such groups in Vancouver.
One group - called Paul's Club - has about 15 members, all of whom are relatively young with early onset dementia. They meet regularly in a downtown hotel. The group often goes for walks in the neighbourhood, chats with neighbours, visits museums and ends each outing with a treat at a gelato shop where employees know and welcome them.
The researchers will spend roughly seven months taking part in activities with group members and recording their observations. While they will ask participants directly what they like and don't like about the program, the researchers understand actions speak louder than words. They will make note of what makes people laugh, engage with neighbours and talk to each other.
Slide show doubles as research tool
Near the end of each evaluation period, the research team will show group members a slide show of photos from their outings. "Photos are a great prompt to get people with dementia to talk about their experiences in the group," says Phinney.
She and her team will then create a detailed case study of both groups' activities and outcomes. Starting in the fall of 2017, they will make the case studies available to people across the country organizing similar groups. The team also hopes its work will be used to help create strategies for dementia-friendly neighbourhoods.
"We as a society really want to know how to cure dementia, but until we do, we need to help people lead fulfilling lives," says Phinney.
Do you want better care for people with dementia and help find a cure? The Alzheimer Society Research Program seeks to fund the most promising research. Whatever you donate today will help us reach our goal faster.