New research shows caregivers need to be included in health care for dementia patients

A new provincial strategy to help seniors as they age looks beyond just the individual being cared for.

The frail senior strategy is based on a research with dementia patients from University of Waterloo researchers, and suggests providing support to family caregivers to improve outcomes for seniors.

That means offering classes for caregivers, overnight respite care to give family members a break and creating behavioural support and community mobile response teams to help older people who are moving between care settings, such as from their homes into a long-term care facility.

"Family caregivers really need more support and education. The system is still very complex and difficult to navigate and older adults with complex conditions are receiving care from multiple providers across multiple systems," said Dr. Jacobi Elliott, who worked on the strategy. "An integrated system is really needed for older adults."

She says providing a wrap-around approach to care is something health care providers are starting to think about more now than in years past.

"[It's] really ensuring that the patient and family are always at the centre of the work that we do in the development of strategies or implementing or improving the health care system; ensuring that those voices are at the table," she said.

'You don't know what they are saying'

The frail senior strategy comes out of the University of Waterloo's Geriatric Health Systems Research Group. 

Researchers wanted to make sure any recommendations they made were "firmly rooted in the lived experiences and priorities" of people with dementia, their caregivers and their health-care providers, the researchers wrote in a paper, published online this month in the Canadian Journal on Aging.

The Waterloo researchers worked closely with the South West Local Health Integration Network and the St. Joseph's Health Care London in 2015 and 2016 to find people with dementia and their caregivers to interview.

Health care providers were also asked for their thoughts on how well the system was working.

Paul Stolee, a School of Public Health and Health Systems professor at the University of Waterloo led the research.

He said it was interesting to see how the two groups perceived the system differently.

Health-care providers said a top concern was supporting caregivers because it's known those who care for a loved one with dementia often faced burnout.

People with dementia and their caregivers said a top concern was that the system was confusing and there was a lack of integrated care. 

One person with dementia described their confusion with health-care providers by saying: "They've got the words that you don't know what they are saying."

A person caring for someone with dementia said they were "constantly repeating the same thing to every person that you see."

Next steps

After the research was done, the South West LHIN decided to use the new strategy to improve their care, and the strategy has since been brought to provincial committees for wider use.

For the South West LHIN, implementing the dementia strategy has meant creating more adult day programs, as well as overnight respite care.  They also plan to create teams to help people move from a home or retirement home into long term care.

In a statement, the LHIN said COVID-19 has caused some community groups to "adjust their operating models."

Elliott says the frail senior strategy can be used as part of a framework for other regions to develop their own best practices for helping seniors.

"I think turning these priorities into action is where we need to go next," she said, noting the plan is to implement the frail seniors strategy between now and 2022.