More than 41 million Americans provide regular care for an older adult, usually a relative, according to the Bureau of Labor Statistics. Of those, more than 15 million provide care for someone with Alzheimer's or another type of dementia, according to the Alzheimer's Association.
This latter group was the focus of a November report from the University of Michigan's National Poll on Healthy Aging, which sought answers on what that experience is actually like.
The results show that being a caregiver to someone with dementia is an experience fraught with significant challenges—but also significant rewards.
"From the outside, it can look extremely stressful," says Erica Solway, Ph.D., M.S.W., M.P.H., associate director of the Michigan poll. "But it's important to know many people find rewards in the experience as well."
Though 78 percent of the caregivers who responded to the poll said the experience was "very or somewhat stressful" and two-thirds said caregiving "interferes with [the] ability to take care of themselves or their daily activities," 85 percent described caring for someone with dementia as "very or somewhat rewarding."
Ruth Drew, M.S., L.P.C., director of information and support services at the Alzheimer's Association, says she has heard from caregivers again and again a sentiment that captures this complexity: "We wouldn't wish this on anyone. It was so hard, and yet we wouldn't have missed it."
The new report also found that despite the stresses and concerns, only 27 percent of caregivers had taken advantage of caregiving resources such as family therapy and support groups.
Caregivers "can feel very isolated," Drew says. But "there's so much help available."
Here are some tips from Solway and Drew on how to make caring for someone with dementia more rewarding and less stressful.
Tips for Caregivers
Learn more about dementia. Understanding the disease itself can help caregivers make sense of the behaviors associated with it and act accordingly, Drew says.
For example: "People with Alzheimer's can have a hard time making decisions," she says, so often presenting one option is better for everyone. The Alzheimer's Association's website is a good place to begin learning more about dementia and its symptoms.
Plan ahead. Don't wait until there is an emergency, Drew advises. Estate-planning documents, including power of attorney, should be in place well before someone begins having trouble speaking on their own behalf. (See CR's advice on broaching that topic here.)
Caregivers should also think about what additional care might be necessary in the future and make a plan for how that care will be paid for. (See "Help With Home-Care Bills" for some possibilities.) Speak to a lawyer who specializes in elder law to get the process started.
Take care of yourself. Taking time away from caregiving to visit the doctor, sleep, prepare healthy food, and more can be difficult in the midst of growing caregiving responsibilities. But it's also "imperative," Solway says, especially because caregiving for someone with dementia can often take place over many years.
Self-care is "a gift to the person you're caring for, since [that's what will allow you to] carry on longer and do it better," Drew says. The person you're caring for "may not thank you, but it truly is an unselfish and very caring thing to do."
Ask for help. CR maintains a guide full of advice for caregivers. And the Alzheimer's Association has an online resource center for caregivers, as well as a 24/7 helpline—800-272-3900—staffed with people who can assist with referrals to local services, legal and financial questions, crisis support, and more.
