Red Deer College is conducting research to look at the challenges for caregivers of those with early onset dementia.
In partnership with Early Onset Dementia Alberta, a report on the study will be complete in April.
RDC psychology instructor Greg Wells, co-supervisor of the study, said dementia affects about 750,000 Canadians and for about five per cent of them it starts before age 65 which is considered early onset dementia.
He said most research has focused on the experiences of older people with dementia and their caregivers. Families with early onset dementia are in an unique situation. Often caregivers are at the age where they are trying to continue to work and their spouse has lost their job due to their dementia.
“Retirement plans go out the window. Often there are dependent children at home, huge financial challenges, and generally a lack of access to social support programs that benefit older adults. What supports there are, like day programs, are often not geared to the needs and interests of younger people,” Wells said.
“We hope through our findings to build public awareness, build understanding of the unique challenges of early onset dementia caregivers, and perhaps facilitate their efforts to improve program and service delivery.”
RDC student Rozalyn Vickery is interviewing 35 caregivers from around the province for the study, including about five in Red Deer.
Vickery said she has found that many of the caregivers say after the interview that it felt good to not have to filter what they said.
“The variety of responses, the lack of consistency is surprising in that the path to receiving a diagnosis especially, is so different for each individual. That really shocked me,” Vickery said.
Often there is someone within support services or Alberta Health Services who has been particularly helpful to the caregiver and that’s also important to recognize, she said.
“The purpose of the research is to find areas where we can make things better. But it’s also to look at areas where we have success and find ways to expand on that.”
Red Deer College has partnered with Early Onset Dementia Alberta for two more studies.