Family caregivers have an important job; supporting their needs will make their work and lives easier
Imagine caring for a child with medically-complex special needs while balancing responsibilities for other family members and trying to maintain a full-time job. Or, consider caring for a parent with dementia whose needs take time away from one’s own family and work.
These are examples of family caregivers —unpaid, and often, untrained — who help parents, spouses, children and adults with disabilities, and other family members with varied needs such as bathing and dressing, managing medications and more complex medical care, and everyday tasks such as preparing meals and keeping track of finances. These are just a few examples of the work they take on so their loved one can receive the care and supervision needed and remain at home.
There are more than 43 million people nationwide who serve as unpaid caregivers. The tasks caregivers take on, as well as the caregivers themselves, are diverse. Given the critical role they play in the continuum of care, it is important to understand how to assist and support their work. To do this, the National Academy for State Health Policy contracted with the LeadingAge LTSS Center @UMass Boston and Community Catalyst to learn what specific services and supports caregivers need and to develop recommendations for change.
Pamela Nadash, PhD, Associate Professor of Gerontology at the LeadingAge LTSS Center at UMass Boston and Eileen J. Tell, a Gerontology Institute Fellow, the project’s co-leads, were part of the team that analyzed the more than 1600 responses.
The research team began by analyzing over 1600 responses from family caregivers and caregiver organizations collected from a recent Request for Information (RFI). The RFI asked respondents to talk about their most pressing needs or concerns as a caregiver and what they would specifically recommend to address those concerns. Continue reading
Len Fishman: What would a composite profile of a consumer you serve look like?
Lisa Gurgone: The typical age is 82 and about one in five are 90 or older. About 55 percent live alone. We have a lot of women with basic homecare needs, someone to help with shopping and food prep. They may need some bathing assistance or have trouble getting dressed in the morning. People sometimes stay in our system for a very long time and may need additional services as they age. We might sub-contract with a visiting nurses association to provide more skilled care. It runs the gamut but the goal is to help these people stay in the community as long as they want. 
William E. Reichman is a physician and chief executive of Baycrest, a leading non-profit elder care organization comprising health care and housing facilities, outpatient services and a research center on one campus in Toronto. His organization operates a 300-bed rehab hospital, a 472-bed skilled nursing facility, 200 assisted living units and 125 independent-living apartments. (Note: In characterizing the facilities, we have used terminology familiar to U.S. readers.)
Len Fishman: A recent Washington Post article reported that 81 percent of COVID-19 deaths in Canada are nursing home residents. How has Baycrest been affected?
William Reichman: Baycrest has had some sporadic cases of COVID-19, both in residents and patients, as well as staff members who likely brought the virus to the campus inadvertently. I think all told, we’ve had six cases among our 1,100 beds. There have been other senior care organizations in Canada which tragically have had 40 percent or more of their residents test positive for the virus and 25 percent or more actually die from infection. So it’s been catastrophic in Canada. 
