“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.”
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.
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: