Spousal caregivers with disabilities face a wide range of adversities

Among the millions of Americans who provide caregiving support to loved ones, those who care for their spouses are the oldest, face the highest burden of many chronic diseases and are the most likely to have a disability, according to a new policy brief (PDF) from Pitt researchers.

The brief is the first in a series of reports from the University’s National Rehabilitation Research and Training Center on Family Support (NCFS) intended to inform public policy and practice around the role of family caregivers, with a focus on understudied populations. The new report also highlights some of the unique characteristics and challenges faced by spousal caregivers compared to other types of caregivers, such as adult children tending to aging parents.

Compared to counterparts without disability, spousal caregivers with disability are more likely to report physical, emotional and financial burdens associated with tending to their loved one, the researchers found.

In addition, 20% of all spousal caregivers with disabilities under the age of 65 live below the poverty line, compared to 7.6% of those over 65. More than 1 in 4 of the under-65 caregivers with a disability also reported challenges to accessing a doctor due to cost, and members of that group were about half as likely as those without disabilities in the same age range to be employed for wages.

Younger spousal caregivers with disabilities also report poorer health than older caregivers with disabilities across areas like mental health, obesity and depressive disorder. At 49%, this group was the most likely to report a diagnosis of depressive disorder, compared to only 17% of those in the same age group without disability and 25% of those over 65 with a disability.

“These findings indicate a potential gap in services for younger caregivers with disability and a need to focus on this population for support,” said Everette James, director of Pitt’s Health Policy Institute and M. Allen Pond Professor of Health Policy and Management at the School of Public Health.

The team combed data for the brief from two long-term national studies that make use of interviews and surveys to gather information about health and caregiving. Close to half of the spousal caregiver population studied was over the age of 65, and individuals in that group often reported worse physical health than other caregiver subpopulations. However, the available data for under-65 caregivers is lacking, the researchers found.

“Due to the way that individuals are sampled for data collection, not all age groups are represented across all data sets, meaning that some information is only available for older care recipient and caregiver pairs,” said Scott Beach, co-director of NCFS and interim director of the University Center for Social and Urban Research.

“In the future, we plan to continue to explore national data on caregivers and look for insights into important understudied populations,” said Meredith Hughes, senior policy analyst at HPI and visiting assistant professor in the School of Public Health.

— Chuck Finder