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What New Family Caregivers Really Need to Know

Regular exercise, respite breaks and connecting with others will help you in this challenging role

woman with caregiver in the park
Fred Froese / Getty Images

“Since my mom was recently diagnosed with dementia, I’ve been confused about what to do,” said the 50-year-old woman at a neighborhood barbecue, balancing a paper plate with a hot dog and potato salad. “Different people give me advice about helping her and making sure I’m all right, but that advice isn’t always the same. I feel like I have to figure this out on my own.”

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Her confusion distressed me. There are millions of Americans in her position and tens of millions more who’ve gone through caregiving in the past. No one starting out as a caregiver, in my opinion, should have to reinvent the wheel. Yet when a parent or spouse is revealed to need care, most people feel lost about what to do. My neighbor wasn’t exactly looking for me to give her more advice — it sounded like she’d had her fill already — but was hoping for a hint at least about where to start.

As I gathered my thoughts to respond to her, contrasting assumptions went through my mind: Families and personalities are amazingly heterogeneous and unique, I thought. No one instruction manual speaks to each of us. Not all help is helpful for everyone. Anything I’d offer must be individualized to her situation and needs.

The second assumption, however, is that researchers have been studying caregiving and family caregivers for over 45 years. They’ve learned a little something about what may work for most people. Though research is about identifying generalities about populations, it at least provides that starting point she was looking for.

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Someone tapped my neighbor’s shoulder at that moment, and she was quickly pulled into another conversation. I was left, holding my red plastic cup, with my little speech unexpressed. If I run into her at another barbecue, here’s what I would share with her about what research tells us hurts and helps many family caregivers:

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What hurts caregivers

Missing barbecues. Not breaking bread with friends. In other words, research tells us that caregivers who become socially isolated from others — perhaps because they believe they must always stay home to attend to a care recipient’s needs — become cut off from a crucial source of nurturance. That makes them worse, not more devoted, caregivers. Unfortunately, sometimes isolation is imposed on caregivers because most friends and family withdraw and disappear. Under those circumstances, caregivers need to make all the more effort to stay connected to those who are there for them, including, possibly, fellow members of a community organization, religious congregation or caregiver support group.

What helps caregivers

If isolation hurts, then connection helps — a lot. There are few more robust findings in social science research than about the importance of social support for coping. My neighbor could also benefit from helping her mother voluntarily, rather than feeling she is trapped and has no choice, and from believing she is making a positive difference in her mother’s life. (An occasional thank-you from her mother would help.) Other important factors include learning a bit about the care recipient’s disease, becoming a good problem-solver for the many challenges that inevitably arise, and recruiting or hiring help when the burden becomes onerously heavy. Engaging in physical exercise or a mindfulness practice, such as yoga or meditation, also tends to reduce the likelihood that caregivers will become anxious or depressed.

I can imagine my neighbor at the next barbecue saying these findings seem like basic common sense. True, I would tell her. But I’d also point out that many caregivers don’t heed their common sense and instead try to hunker down and power through. Caregiving research helps us see the pitfalls and the paths forward more clearly so that we can do our best for our loved ones and ourselves.

What Not to Say to a Caregiver
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