The caregiver crisis: New research exposes gaps in our care system

This article was originally published in the fall 2019 issue of Renaissance Magazine.

When we talk about aging, we don’t always talk about the people in caregiving roles —the friends, children or spouses of the people needing care. But we should be.

According to Dr. Nathan Stall, a geriatrician and Ph.D. candidate working with Dr. Paula Rochon, the RTOERO Chair in Geriatric Medicine, supporting family and friend caregivers is one of the most significant health care challenges of our generation.

“The reality is most older adults want to stay in their home — 95% of them. And there’s a huge shortage of long-term care beds, which is the place where they least want to go,” explains Dr. Stall. “So really, it falls on family and friends to help these individuals, not only to stay in the community but also in times of crisis.”

The intersection of medicine, health policy and society is where Dr. Stall has focused his Ph.D. work with Dr. Rochon. He’s conducting breakthrough research by linking and analyzing large Ontario-wide datasets of patients with dementia and their caregivers.

His work is proving what he and other healthcare professionals notice in their practices: caregivers are experiencing significant health, social, career and economic consequences related to their caregiving role. He’s also uncovering a link between caregiver stress and patient outcomes.

“We know that 40% of caregivers in these roles experience stress. We also know when the caregiver is distressed, the person with dementia does worse,” says Dr. Stall.

He says the research will help influence change. “It’s important with something like this not just to recognize it as an issue, but to have proper data on it and to show where gaps are so we can invest our resources to help caregivers. There’s a huge problem, and it’s complex. That’s why proper evaluation and proper data will guide policymakers.”

Dr. Stall says we are starting to see movement in this area. Organizations like the RTOERO Foundation are helping to fund critical research and increase awareness of the need.

Caregiver advocacy groups now exist, as well as community programs designed to support caregivers. There’s also public policy work happening, including efforts to create flexible workplaces with caregiver leave, similar to parental leave. Tax credits are available, though he’s concerned the program isn’t helping as many people as it could because of the structure and complexity.

Dr. Stall says more coordination is needed. “We know caregiving will affect every Canadian at some point in their lives to differing extents. Despite everyone being affected, there are huge gaps in this area.”

It’s those gaps Dr. Stall aims to help fill by presenting policymakers, healthcare practitioners and other stakeholders with the research they need to address this significant and complex societal challenge.

Three ways you can take action on this issue

1. Share information. Talk about this issue with friends and family. You can share this article or other materials you come across. It’s important to emphasize that this isn’t just something that impacts aging Canadians. It’s a national societal issue that will affect all of us.
2. Support the RTOERO Foundation or another organization that is working on this issue. The RTOERO Foundation funds aging-related research, the training of health and social care professionals in geriatric care, and collaborative community programs to address social isolation, the top emerging issue for aging Canadians.
3. Share your experience. If you’re a caregiver, it’s important to advocate for your own needs and recognize your important role in our system. You can speak with your health care provider about the challenges you’re facing. Watch for opportunities to participate in research studies or to share your story to support advocacy work. Your voice is important.