New study highlights unique challenges faced by caregivers

The number of Canadians living with Alzheimer’s disease and other forms of dementia has continued to rise steadily, as have the demands experienced by their care partners.

Caring for and supporting a loved one living with dementia - which is typically caused by a neurodegenerative disease or stroke - is a role that family members or friends often take on. Statistics Canada reports that in 2018, approximately one in four Canadians aged 15 and older provided care to a family member or friend with a long-term health condition, a physical or mental disability, or problems related to aging.

A new study, led by Dr. Derek Beaton (while at the Rotman Research Institute, currently at Unity Health Toronto) and Dr. Angela Roberts (currently at University of Western Ontario), used data collected across five diseases by the Ontario Neurodegenerative Disease Research Initiative (ONDRI) – a research program carried out in partnership with OBI. The data, which is stored in Brain-CODE, OBI's neuroinformatics platform, underscores the individualized nature of caregiving burdens.

The study, which examined a number of caregiving issues, highlights the importance of considering the unique challenges faced by individual care partners and their care recipients. These insights can help inform opportunities for better supporting care partners through personalized programs, including education programs and sharing best practices for self-care.


OBI's work centres around the concept of 'lab to life' – how we can design, execute and translate the important brain research we do so that it directly improves the quality of life of those living with brain disorders – and the lives of the people who support their care. Brain-CODE allows for greater ability to achieve that vision.

Using data curated from this state-of-the-art neuroinformatics and analytics platform, ONDRI researchers were able to investigate the experiences of family and friend care partners and the various types of stress and strain they report in caring for individuals across multiple diseases: Alzheimer’s Disease/Mild Cognitive Impairment, Parkinson’s Disease, Frontotemporal Dementia, Cerebrovascular Disease and Amyotrophic Lateral Sclerosis (or Lou Gehrig’s disease).

Their findings, as outlined in the paper, highlights the “importance of thinking about people living with neurodegenerative conditions, their care partners, relatives, and study partners as one unit when it comes to health care.”

Their work also emphasizes more broadly the importance of what OBI and ONDRI are doing to focus on people and their needs instead of the disease itself. Caregivers are in need programs and training that are personalized to their needs but mainly to support behavioural challenges and activities of daily living for their partner, such as brushing teeth, getting dressed, and feeding.

Initiatives such as OBI’s GEEK program, which funds organizations like the Alzheimer Society of Ontario to develop the UFirst training platform, supporting caregivers in providing better care for their partners with dementia/neurodegenerative disease.

This is a real-life example of how to apply the continuum of research to care in order to make a tangible difference in the lives of those impacted by brain disorders.

Read the 'Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the ONDRI study' paper, which has been accepted for publication in the International Journal of Geriatric Psychiatry.