Caring for and supporting a loved one with dementia and/or a neurodegenerative disease[1], 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.[2]  With the population aging and incidence of neurological disorders increasing, we can expect even more family members and friends to take on this role.

A number of studies, including the ONDRI study outlined below, have found that caring for another person with a neurological disorder can be a positive experience; but it can also be physically, financially, and emotionally draining, leaving the carer feeling isolated from others. Not uncommon are feelings of guilt, stress, and exhaustion.  The stress and strain of caring have been associated with poorer health and well-being outcomes for caregivers.

As part of the Ontario Neurodegenerative Disease Research Initiative (ONDRI), researchers are investigating the experiences of family and friend caregivers and the various types of stress and strain they report in caring for individuals across multiple neurodegenerative disorders: Alzheimer’s Disease/Mild Cognitive Impairment, Parkinson’s Disease, Frontotemporal Dementia, Cerebrovascular Disease and Amyotrophic Lateral Sclerosis (or Lou Gehrig’s disease).

What the Research Tells Us?

According to Derek Beaton, one of the  authors of the  “Relationship Between Caregiving Burdens and Clinical Characteristics in the Ontario Neurodegenerative Disease Research Initiative (ONDRI),” the research highlights the “importance of thinking about people living with neurodegenerative conditions, their caregivers, relatives, and study partners as one unit when it comes to health care.”  When someone is seen clinically for dementia or a neurodegenerative disease, it is critical that the focus be on the well-being of both the person living with the disease and their caregiver.

To get a better understanding of the type and severity of caregiver burden experienced, ONDRI study participant (across all diseases studied) completed the Zarit Caregiver Burden Interview.

When to Worry About the Caregiver

ONDRI study results indicate that in their cohort, which tended to include people living at the earlier stages of most of the diseases studied, two key questions (out of 22 in the assessment) were critical and reflective of overall care burden and its impacts across individuals regardless of neurodegenerative disease group:

  • Do you feel your relative is dependent on you?
  • Are you afraid of what the future holds for your relative?

Why is this important?

Caregiver burden and its impact on physical and other health measures is affected by several factors. ONDRI research indicates that each person’s experience with providing care is a truly unique and singular experience.

This analysis and its conclusions are important because they:

  1. Help to inform caregiver education and training programs
  2. Can highlight areas for supporting caregivers that may optimize overall health and well-being
  3. Can help clinicians know whom to refer over for appropriate services

“Just as each person with a Neurological Disease has unique symptoms, behaviours and rate of decline, each caregiver has a different approach to the set of challenges they are presented (with)”, says Jill Czuczman, a caregiver for her husband David, who is living with FTD and who participated in two of ONDRI’s observational studies. ONDRI’s research study “Relationship between caregiving burdens and clinical characteristics in the Ontario Neurodegenerative Disease Research Initiative (ONDRI)” is currently in preprint and will be published at a future date.

To learn more about our caregiver research, click here. 

For helpful caregiver resources click here

[1] Neurodegenerative diseases are characterized by progressive loss of brain cells in certain parts of the brain which can result in both cognitive and motor deterioration in persons living with these diseases.