On July 1, York University Associate Professor Mattias Hoben was awarded the Helen Carswell Chair in Dementia Care within the Faculty of Health’s School of Health Policy and Management for a five-year term.
In this role, Hoben will evaluate day programs that provide care and support to older adults living with dementia.
The Chair was created and is funded by the Carswell Family Foundation and makes possible a collaboration with the Alzheimer Society of York Region and York’s Faculty of Health.
Many older adults living with dementia attend day programs for parts of the day, while returning to their homes overnight. Supports and services offered through these programs can include: transportation; meals; recreational activities (e.g., playing games, musical activities, crafting, painting); socializing with other clients and day program staff; physical, cognitive and spiritual activities; social work counselling; case management support; and – to a limited extent and as needed – personal, nursing and medical care. However, depending on the program, admission criteria, supports and services offered and funding models vary.
Along with these supports, the programs offer respite to family/friend caregivers of older adults living with dementia.
While older adults prefer to receive care at home for as long and as safely as possible, even at advanced stages of their dementia trajectory, this is often not possible, says Hoben. When care needs become more complex, caregivers may not be able to meet these needs and the individual in need of care must move into a long-term care home.
“By providing a range of supports and services, day programs aim to assist older adults living with dementia to maintain, restore or improve their health, social, physical and cognitive functioning, and to maintain the highest level of independence possible,” says Hoben. “They also provide respite to caregivers during the daytime and allow them to continue working a paid job. Ultimately, the intention is to prevent or delay admissions to facility-based continuing care and to enable older adults living with dementia to remain in the community for as long and as safely as possible.”
The question of whether older adult day programs work as intended currently constitutes a knowledge gap. Hoben says there is a lack research to demonstrate whether or not day programs are indeed effective in preventing or delaying a move into a long-term care home, whether the programs decrease physical and cognitive decline of older adults living with dementia, and whether the programs reduce the workload of family/friend caregivers.
Research is also lacking on the experiences of older adults living with dementia, their family/friend caregivers and care staff with respect to receiving or providing day program services and on how to improve these services if needed.
In collaboration with the Alzheimer Society of York Region, older adults living with dementia, their family/friend caregivers, day program staff/managers/operators, and representatives from the Ontario Ministry of Health and the Ontario Ministry of Seniors and Accessibility, the Helen Carswell Chair in Dementia Care will generate this much-needed evidence, says Hoben, and will make a difference in the quality of life for both individuals living with dementia, and their family/friend caregivers.
“We hope this partnership will further validate the good work that is being done in our programming, and will help to support future initiatives,” Loren Freid, chief executive officer of the Alzheimer Society of York Region, said. “The research of an endowed Chair and graduate students will provide expertise in dementia care that can be shared across the province and across Canada.”
Allan Carswell, York University professor emeritus of physics, and his wife Helen established the Carswell Family Foundation with an objective of supporting the education and health-care sectors to make a difference in the lives of others. In the 1990s, Helen was diagnosed with Alzheimer’s disease and recently passed away. Helen and her family benefited enormously from the day programs offered by the Alzheimer Society of York Region.
"It was incredibly touching to hear Professor Emeritus Carswell speak about his wife's legacy and about his experiences with caring for Helen during his speech after receiving the Philanthropist of the Year Award on Nov. 15," recalls Hoben. "It was actually Helen who initiated – and to a large extent drove – the couple's philanthropic engagement."
As the severity of her dementia progressed, she required an increasing level of care because she could not stand, speak or do anything for herself anymore, said Hoben.
"Professor Emeritus Carswell highlighted how invaluable the support from the Alzheimer Society of York Region was in caring for Helen – especially the support provided in day programs.
"It is an honor having received the Helen Carswell Chair in Dementia Care," continued Hoben. "In collaboration with the Alzheimer Society of York Region, health policy decision makers, and individuals living with dementia and their caregivers, we will work to honor this important legacy by making a difference in the quality of life of individuals living with dementia and their caregivers."