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The Changing Face of Family Caregiving

Kevyn Burger January 28, 2019
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A look at how to better support overlooked caregivers.

Health economist Mónika López-Anuarbe found her most recent research topic within her own family. She’s studying the responsibilities, duties and burdens of male caregivers.

“My brother is a caregiver for my father in Costa Rica; my uncle lives with my grandmother in California and is her primary caregiver. They’re both on Medicare,” said López-Anuarbe, an economics professor at Connecticut College.

Statistically, family caregivers are most likely to be middle-aged, middle class women. The 2015 Caregiving in the USA report by the National Alliance for Caregiving and AARP found that 60 percent of the nation’s 40 million unpaid family caregivers are female, specifying that the typical family caregiver is a 49-year-old woman.

But a growing number of academics are evaluating challenges facing caregivers outside that profile. New research is spotlighting the practical needs of these often overlooked caregivers, with suggestions about programming and policy adjustments that can help to reinforce them in their role.

Male Caregivers Less Likely to Seek Help

In her research, López-Anuarbe found male caregivers—husbands, sons, sons-in-law, brothers and grandsons—more comfortable handling household chores and managing finances than attending to the physical and hygiene needs of a loved one.

“The tasks that stressed them out the most was personal care—bathing, dressing, helping with the bathroom,” she said. “A guy would rather go up on the roof.”

López-Anuarbe also concluded that men are less likely to seek help, like that offered through caregiver training courses or support groups that can lead them to community-based resources and practical advice. She thinks more targeted outreach could help men bolster both their practical and coping skills and boost their confidence.

“Men under-report the burden of caregiving and under-utilize services available to them. They feel like they ought to be able to figure it out for themselves,” she said. “If they do walk in to a group and see that it’s all or mostly women, they’re likely to walk right out and think ‘this is not for me.’”

LGBT Caregivers Redefining Family

The presence of male caregivers is far more commonplace in the LGBT community than in the population at large.

Still Out, Still Aging, a MetLife Study of LGBT Baby Boomers, found gay, bisexual, and transgender men nearly as likely as women to be giving care to another adult, with 14 percent of GBT men calling themselves full-time caregivers. The study also noted that LGBT adults are more likely to be on duty with non-relatives. Across the gay community, the “family” in family caregiving carries a flexible definition.

“LGBT folks have historically relied on what we call chosen family; it may be that they are isolated from their family of origin or find a greater need for support from people living a similar experience,” said Benjamin Capistrant, a social and population health scientist researching health and aging and a professor at the Smith College School of Social Work.

The Met Life study quantifies the role of chosen family; it found that 21 percent of older LGBT adults have provided care to a friend, compared to 6 percent of older heterosexual adults. 

“That chosen family is a really meaningful, hugely important source of support and can loom quite large,” Capistrant added. “It has its roots in the AIDS epidemic of the 80s, when the community had to take care of each other.”

Studying the demographics of LGBT caregivers, Capistrant notes they are less likely to be in long-term relationships, be married or have adult children who would be go-to sources for caregiving.

But his research turned up no substantial differences in the hours of care, duration of care over years or the type of care provided by gay caregivers compared to their heterosexual/cis gender counterparts.

“The implication is that they are caring in the same ways, so they need the same services. Maybe it doesn’t matter if they are gay or trans when they take care of their mothers, but in other situations it does,” he said.

Capistrant’s ongoing work includes a National Cancer Institute intervention looking at the value of support systems for men with prostate cancer. That ongoing support can be a critical variable that can even impact survival of the men undergoing treatment.

His research concludes that “…lower social support can contribute to worse prostate cancer outcomes, and differences in social support may contribute to disparities in outcomes between gay and bisexual men compared to straight men.”

Capistrant found unmet needs and obstacles facing the male partners/caregivers of these prostate cancer survivors.

“Existing literature looks at husbands and wives. Services for caregiving for a man with prostate cancer are almost exclusively heteronormative. Male partners of men with prostate cancer have felt excluded or unwelcome in those spaces,” he said.

“Those supports ignore the dimensions of caring for someone with a sex-based cancer, which may come with loss of sexual drive, erectile dysfunction and urinary incontinence.”

In the future, LGBT families will likely look more like heterosexual families, with more marriages and children. But that shift won’t come soon enough for the LGBT generation that is aging now. Capistrant hopes organizations that offer support and write policy regarding caregiving will take note of his research and consider the unique and complex needs of LGBT caregivers.

“Our research found that LGBT caregivers reported more days with poor mental health than non-LGBT folks, suggesting they are at particular risk for stress,” he said. “An unhealthy caregiver, whether mentally or physically, is less likely to provide high-quality support, so that would be another place to tailor services for LGBT caregivers.”

This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and AARP.

Kevyn Burger

Kevyn Burger is a freelance feature writer and broadcast producer. She was named a 2018 Journalist in Aging Fellow by the Gerontological Society of America. Based in Minneapolis, Kevyn is the mother of three young adults and one rescue terrier.

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