Dementia care study highlights need for caregiver support, quality of care

Tuesday, July 21, 2020


Caregiver with older adult colouring a picture.

People with dementia and their caregivers need to be included when health priorities are determined at the local level, shows a University of Waterloo study.

Researchers from the Geriatric Health Systems Research Group interviewed 59 persons with dementia, their caregivers, health-care administrators and policy-makers to find out what respondents perceived as system strengths and weaknesses in the southwest region.

“We found it interesting that the number one priority for health-care providers and administrators was support for the family care partners, while persons living with dementia and their care partners ranked a number of health-care system priorities higher, including care quality and system coordination,” says Paul Stolee, a School of Public Health and Health Systems professor who leads the research group. 

Both groups identified the following as areas of concern: a need for more integration and coordination, a need for more person-centred care, support for care partners and more flexibility in the provision of services.

The study also showed that persons with dementia and their caregivers identified care in the early stages of dementia as the top system strength, while providers, administrators, and policymakers identified a diversity of services as the top strength. Both groups highlighted professionalism and compassion that persons with dementia receive from care providers in their top three strengths.

“This reflects the importance of getting the views of all of those involved in the dementia journey,” Stolee says. “We believe it was critical to this effort that we were able to draw on the lived experiences of persons living with dementia and their families.”

The responses from the interviews, along with a subsequent survey, led to the creation of five strategic priorities for the South West Local Health Integration Network dementia strategy: Promoting patient centred care, Improving care partner support, Supporting persons with dementia across the disease continuum, Improving access to care and improving quality across the system of care.

Stolee says that regional strategies work hand-in-hand with national and provincial strategies. “Some priorities are more appropriately addressed at one level than another – for example, a national response would be appropriate for research funding, health care workforce education can be addressed at a provincial level and a regional strategy can focus on issues related to local service delivery.”

Catherine Tong, another researcher with the group, says, “While we are all currently, and justifiably, focused on the COVID-19 pandemic, we must continue to build on this strategy, the national and provincial strategies, and continue efforts to foster dementia-friendly communities.”

The study, “Whole Person, Whole Journey: Developing a Person-Centred Regional Dementia Strategy,” was published in the Canadian Journal on Aging. It is co-authored by Paul Stolee, Jessica Ashbourne, Jacobi Elliott, Sarah Main, Nicole Holland, Cole Edick, Courtney Ropp, Catherine Tong and Sheila Bodemer, all at Waterloo.