En español | During the week after Sam, a 60-year-old, African American former client of mine, was diagnosed with a recurrence of colon cancer, his wife and two adult daughters quickly changed their work schedules to drive him to the hospital for the multiple rounds of chemotherapy he'd need. Sam's three nephews stopped by to watch football with him and cheer him up. A group of congregants from the family's church came by the house after Sunday services to pray with him. Neighbors dropped off meals.
I've seen other families and communities rally around an ill friend or family member, especially in the early stages before fatigue sets in and they drift back to their own lives. But Sam's network of support stuck with him over months that stretched into years as his cancer spread. He didn't have a lot of money but was rich with caring people. They surely felt tested at times by Sam's caregiving needs and glum moods, but most hung in there, proceeding in workmanlike fashion without complaint as if linked in the belief that “this is what kin do."
According to an AARP/National Alliance for Caregiving May 2020 fact sheet on “The ‘Typical’ African American Caregiver,” based on research conducted for the Caregiving in the U.S. 2020 report, African Americans often have more burdensome caregiving situations than their non-Hispanic white or Asian caregiver counterparts. They also tend to be younger, are often unmarried, have poorer health, and frequently have to balance caregiving with full-time jobs.
This profile would suggest that African American caregivers should be highly stressed. But other research over the past 20 years has found they cope better with caregiving than white caregivers. For instance, a 2020 metanalysis by Liu, Badana and others, published in the journal The Gerontologist, found that African American dementia caregivers had somewhat better psychological well-being than white dementia caregivers. The authors offered several possible reasons, including the expectation among African Americans that family and community members will look out for one another and their relatively greater commitment to religious practices and values.
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Research is about generalities; there are many individual African American caregivers who are struggling and many white ones who are thriving. But, on the occasion of Black History Month, it is still worth reflecting whether there are lessons to be learned from Sam, his family and community members, and others that could help family caregivers of all races and cultures. As a white former caregiver, I'm an outside observer who is no expert on the African American community. Here are a couple ideas, though, to at least consider:
It takes a village
Many caregivers are hard pressed to keep together even a small team of immediate family members who are agreeable to contributing. When those few later disappear, the entire crushing weight lands on the primary caregivers’ shoulders. How does it happen then that, for many African American caregivers, that load is lightened through sharing it with immediate family and beyond to extended family and community members?
My thought is that in a minority community that has faced severe hardship and discrimination, an ethic of internal mutual reliance long ago became part of its culture as a survival strategy. Feeling connected to and responsible for one another gives each individual a greater chance to succeed. When faced with a caregiving challenge now, that same network of support kicks in naturally.
How can the other caregivers create such networks? Many religious institutions and other community organizations try by instilling a sense of group affiliation and mutual responsibility. I bring a covered dish to you when you're sick; you will bring a covered dish to me when I'm sick. It requires us to stop seeing ourselves as solo agents but instead as integrally connected to caring communities we nurture and that nurture us.
Feel the love — and meaning
According to the AARP/NAC fact sheet on African American caregivers, over half of the them feel they have no choice about being a caregiver. As onerous as that sounds, a “majority find a sense of purpose” in caregiving — more than among white caregivers. That sense of purpose could be defined in religious terms ("doing God's will") or family terms ("giving back to someone who took good care of me"). Or it could be about doing right by the community that has done right by you.
Finding those personal meanings in caregiving is very much an individual task. But the culture that shapes us frames our perceptions of the sacrifices we make and the meanings we derive. African Americans may cope with caregiving better because their culture enables them to feel more positively about it. For the rest of us, we need to see the caregiving work we do in the larger context of supporting us all.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.