Caregivers with their own disabilities face a litany of complications while trying to tend to aging or ailing spouses and partners: health problems, mental health difficulties, work issues, even financial and healthcare strains, according to the inaugural white paper from a University of Pittsburgh center studying caregiving.

While caregiver issues abound across all groups of Americans today, “NCFS Caregiver Profiles: A Closer Look at Spousal Caregivers” analyzes recent data from two large national datasets to provide a detailed look at caregivers who are supporting a spouse or partner and identifies unmet needs for support among younger caregivers with disabilities.

In fact, this data dive from the Pitt National Rehabilitation Research & Training Center on Family Supports (NCFS) found that 20% of all spousal caregivers with disabilities under the age of 65 live below the poverty line — compared to 7.6% of their counterparts over 65. More than 1 in 4 of the under-65 caregivers with a disability reported challenges to accessing a doctor due to cost as well. Under-65 spousal caregivers with a disability also were about half as likely as those without disabilities in the same age cohort to be employed for wages (32% vs. 60%), were less likely to be self-employed (5% vs. 10%) and were less likely to have a four-year college degree (12% vs. 27%). At 49%, this under-65 caregiver cohort with disabilities also 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 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, JD, MBA, Director of Pitt’s Health Policy Institute and M. Allen Pond Professor of Health Policy and Management at the School of Public Health.

The NCFS spousal caregiver brief is the first in a series of reports intended to inform public policy and practice around the role of family caregivers — with a focus on understudied populations. The new report 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.

Spousal caregivers were more likely to report a disability and were generally older than other caregiver subgroups, with close to half of the population studied over the age of 65. Spousal caregivers also had higher burdens of chronic disease and often reported worse physical health, even leading to issues at work.

However, the 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, PhD, Co-Director of NCFS and Interim Director of the University Center for Social and Urban Research.

Pitt researchers combed data from the Behavioral Risk Factor Surveillance System and the National Health and Aging Trends Study National Study of Caregiving, studying populations both younger and older than 65, and with or without a disability. Among their findings:

• Nearly half of all spouse caregivers are over 65 (47%, with another 39% between ages 45-64); adult children caregivers over 65 comprise only 8% of their group.
• When comparing chronic disease among all caregivers – tending for child, parent, other relative, non-relative or spouse – the spouse caregivers had the highest prevalence of many issues: obesity/overweight (71.1%), high blood pressure (51.4%), high cholesterol (50.2%), arthritis/gout/lupus/fibromyalgia (48.2%), diabetes (18.8%), skin cancer (13.3%) or other type of cancer (13.7%). When the data is categorized by age and the presence of disability, spousal caregivers over age 65 with disabilities have the highest burden of many chronic diseases.
• The gulf when it came to work was wide: 8% of those with disabilities caring for a spouse age 65 or older said caregiving made work harder and 6.5% missed work due to caregiving, compared to 2% in each category of those without disabilities.
• Indicators of caregiver burden were high for spousal caregivers with disabilities: spousal caregivers with disability were approximately twice as likely to meet the criteria for risk of anxiety or depression and to report financial, physical and emotional difficulties providing assistance to their spouse or partner, compared to those without disabilities.
• The majority of caregivers with a disability said they received training following the hospitalization of their spouse or partner, and they were more likely to use assistance such as paid care, respite services and support groups. Still, utilization of such support services was relatively low – less than 10% of caregivers with or without disabilities.

“In the future, we plan to continue to explore national data on caregivers, and look for insights into understudied populations,” said Meredith Hughes, JD, MPH, Senior Policy Analyst at HPI and Visiting Assistant Professor in the School of Public Health.