Ensuring Rights to Health, Independence, and Rehabilitation among Canadians Living with Dementia
University of Waterloo
Associate Professor, Department of Kinesiology
University of Waterloo
Associate Professor, School of Public Health and Health Systems
Schlegel-UW Research Institute for Aging
Schlegel Research Chair in Dementia
Dementia Advocacy Canada
Dementia Advocacy Canada
Alzheimer Society of Canada
Stigma and exclusion remain common experiences for the over 419,000 Canadians living with dementia. People are viewed as “suffering” from dementia, rather than living with dementia. In 2020, it is still common for people to receive few supports and little hope after a diagnosis of dementia. Too often, people are only told to “get their affairs in order”. The possibility of improving or prolonging ability, independence, and well-being among persons living with dementia is largely ignored.
There is an ethical, moral, and legal responsibility to treat persons living with dementia as full citizens with equal rights. Articles 25 and 26 of the United Nations Convention for the Rights of Persons with Disability enshrines the rights of persons with disability to health, habilitation, and rehabilitation. This includes persons living with dementia. In signing the convention, Canada committed to providing equal access to healthcare and services that promote independence, physical, mental, social and vocational ability, and meaningful participation in society. A respect for human rights is now identified as one of the five principles that direct and guide action under Canada’s first National Dementia Strategy. Yet, full human rights are not realized for Canadians living with dementia.
Rehabilitation is a broad term that refers to strategies to regain or slow decline in skills or abilities. Rehabilitation can also include learning ways to compensate that allow independence despite changing abilities, including the use of assistive devices. Some of the strongest evidence supports physical exercise as a strategy to promote functional independence and, possibly, cognitive function among persons living with dementia. Indirectly, family care partners experience lower stress when their family member living with dementia participates in physical exercise programs. Specific challenges common to dementia also fall under the scope of practice of rehabilitation professionals. For example, speech language pathologists and audiologists can promote communication, occupational therapists can develop compensatory strategies to maintain function, and physiotherapists can improve mobility and recovery after injury.
The potential benefits of a rehabilitation system that supports persons living with dementia are considerable. The traditional approach of caring for persons living with dementia by doing “for” them (home care, long-term care) demands time and financial resources. In contrast, a focus on rehabilitation for persons living with dementia could reduce costs and delay reliance on family, friends, and the health care system.
Stigma rooted in our health care sectors results is systematic in its exclusion of people with dementia. It is still common for rehabilitation programs to de-prioritize or explicitly exclude persons living with dementia. For example, a study published in the Journal of the American Geriatrics Society found that 40% of persons living with dementia have no formal rehabilitation after hip fracture, which is critical to recovery. Those who exclude persons living with dementia from rehabilitation argue that rehabilitation is less effective for this population. This argument is circular. Since persons living with dementia are often excluded, rehabilitation therapists have little knowledge or experience regarding dementia. Further, rehabilitation practices and programs are not intentionally developed to suit their needs.
It is the right of each person living with dementia to have appropriate, time-sensitive, patient-centered rehabilitation. New policy and practices must be informed by an equity approach, with contributions from scientific knowledge, professional colleges, and people with lived experiences of dementia. Accessibility policies must include specific guidance to accommodate the needs of persons living with dementia, a group often considered “separate” to other persons with disabilities by the public and in policy. Professional colleges must require knowledge and training regarding dementia. Scientific discovery must continue to identify accessible and effective approaches to rehabilitation for persons living with dementia, focusing on the outcomes that are important to them (independence, cognitive abilities, social inclusion).
Canada’s inaugural National Dementia Strategy envisions:
“a Canada in which all persons living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, well understood, and effectively treated”.
It is time to move beyond aspirations to enact policies and practices that ensure equality of access to all persons with disability, including those living with dementia. Rehabilitation is just a first step but an important one that can facilitate the highest possible standard of health and independence to facilitate ongoing and meaningful participation.