The strain felt by caregivers came through clearly in a recent study, with 78 percent saying caregiving was stressful.

More than 5 million Americans are living with Alzheimer’s or other forms of dementia, and that number could rise to as high as 16 million by 2050, according to the Alzheimer’s Association.

A new study gives a glimpse into the lives of the spouses, grown children and other family and friends who act as caregivers for people with dementia. The study was conducted by the University of Michigan Institute for Healthcare Policy and Innovation and sponsored by AARP and Michigan Medicine, U-M’s academic medical center.

The strain felt by caregivers came through clearly in the study, with 78 percent saying caregiving was stressful.

“That’s no surprise,” said Erica Solway, associate director, National Poll on Aging, and senior director, Institute for Healthcare Policy & Innovation, University of Michigan. “Caregivers have a lot on their plate, but in addition to the stress many also feel rewarded, too.”

Revealing the positive side of caregiving, the poll found that 85 percent of family caregivers called it a rewarding experience.

Even more interesting, Solway said, 45 percent rated it as “very rewarding,” compared to 19 percent who called it “very stressful.” However, 40 percent of those who called dementia caregiving very stressful also said it was not rewarding.

Another potential benefit? Perspective. Ninety-one percent of the caregivers said they had thought about their own future needs because of their experience taking care of someone with dementia.

Sacrifice for others

Caregiving for a loved one with dementia often interferes with the personal demands of a caregiver’s life and work — and sometimes even their health.

“Sixty-six percent of people said they are not doing what they need to do in their own lives, and 27 percent said they neglected their own health because of caregiving demands,” Solway said.

Caring for someone with dementia is a difficult and long-term undertaking, Solway said. Caregivers were most likely to be women, younger than 65, and taking care of a parent. Nearly half were employed in addition to being caregivers. They took care of medical needs, household tasks, and other activities to keep their loved one safe. One-quarter said the person they were caring for couldn’t be left alone for more than an hour.

Resources available

The sheer volume of people with dementia has led to the creation of many resources for caregivers. These range from self-help tools and classes for learning new skills that may be needed in the role, to support groups and respite care that can help give caregivers a break from their duties.

Surprisingly, the study found that only one in four caregivers took advantage of resources available to them.

One resource is the Alzheimer’s Association Helpline at 800-272-3900, available toll-free 24 hours a day, seven days a week.

Visit to connect with services for older adults and their families in your area.