Protracted caregiving can take toll: U of A study

“Caregiving” is often more than a brief, one-off experience and for those coping as caregivers for decades, it can take a toll on health, finances and relationships, shows new research out of the University of Alberta.

The first study of its kind to gauge caregiving across a person's lifetime debunks the myth that looking after a sick loved one tends to be brief, said study lead Janet Fast, a family economist in the faculty of agricultural, life and environmental sciences.

“Caregivers often give up a lot. Providing care to a family member or friend with a chronic health condition, disability or aging-related need can go on for just a few years for some caregivers, while it can span several decades for others,” said Fast, in a U of A news release.

Such lengthy efforts to care for loved ones can cause the caregiver, over time, chronic stress, loneliness, poor health, disrupted careers, pensions and crumbled relationships, adds study co-author Jacquie Eales, who worked with Caregivers Alberta to create a video series about such challenges. Eales adds that some caregivers are “in crisis mode all the time.”

The study draws on a Statistics Canada survey of family care.

A “compressed generational” care trajectory was most common, with over half of caregivers starting such responsibilities at age 63 on average. The shortest duration of care was four years, typically looking after a spouse or parent. And 13 per cent of them later had a second episode of caregiving.

Next most common was the broad generational care trajectory, starting when caregivers were in their early 50s and involving more than one care episode — typically caring for parents, partners or sometimes friends. It lasted roughly 14 years.

But one of the most challenging trajectories is intensive parent care, with caregivers starting in their early 50s for an average duration of 11 years.

“Typically they'd spend the last 15 years of their career working full-time, maybe at their peak earning years leading up to retirement,” said Fast. “The challenge is they're often also caring for multiple parents at the same time, making it impossible to balance paid work and caregiving.”

Additionally, career care describes people in their early 30s who find themselves looking after close family members for 30 or more years — often children with disabilities, but also parents or partners with chronic or mental health conditions.

And a fifth pattern, serial care, also can go on for 30 years, and it has the highest number of care episodes and the most overlap of caring for more than one person at a time. Most of these caregivers — 71 per cent — were female, “the kind-hearted woman who helps everybody,” Eales noted.

The study highlights the various patterns of caregiving across a life course and that can help building effective, supportive policies, said Fast.

“Knowing more about the diversity among caregivers lets us develop policies and programs for them that are more apt to be successful. If we understand how early caregiving experiences can accumulate, disadvantaging people in later life, we can intervene at a time and in a way that reduces the long-term impact.”

Young caregivers or parents looking after children with disabilities, for instance, may need extra support to get into and stay in the workforce. Leaves of absence for compassionate care and critical illness exist in Canada, but don't necessarily reflect the many years some Canadians devote to caring for family members and friends.

“As a result, some may be forced to retire early or are let go from their jobs because they can't perform well under the circumstances,” Fast said.