When Nancy Daly was helping to care for her late mother, who had Alzheimer’s disease, the stress was so great that she would often shut herself in a bathroom and cry into a towel. For more than two years, Daly regularly flew from her home in California to her mother’s in Maryland, eventually to no recognition. “It was as if my entire childhood was erased, when she did not know me,” says Daly, 59. “But I had to grit my teeth and bear it. It was my job to be there.”
Daly’s situation is likely familiar to many of the 16 million Americans who serve as unpaid caregivers to someone with Alzheimer’s disease or dementia. Because the tasks involved are so intimate and expensive to outsource, caregiving often falls to loved ones rather than professionals. And the number of caregivers is projected to grow: a recent study estimated that Alzheimer’s diagnoses will more than double over the next four decades as the U.S. population ages.
Research shows that Alzheimer’s caregivers face significant physical, financial and mental burdens. In an October survey by the Associated Press—NORC Center for Public Affairs Research, about a third of caregivers said they struggled to manage their own health and had skipped going to the doctor—even when they were sick or injured—because of their duties. That’s especially concerning since dementia caregivers are themselves an aging group: 34% are now 65 or older.
Other research suggests that dementia caregivers have higher levels of stress and depression than other types of caregivers. That’s likely because of the progressive nature of Alzheimer’s, which eventually requires virtually around-the-clock care, says Elena Fazio, a health scientist administrator at the National Institute on Aging. “There’s not an opportunity for respite,” she says. “[People with Alzheimer’s] have a host of behavioral symptoms”—like wandering and mood swings—”that make it more complicated.” Worrying for a loved one’s mental and physical safety, plus the isolating nature of the disease, increases the risk for stress, depression and anxiety, Fazio says.
Being a caregiver is also expensive and can interfere with one’s career. Massachusetts this year joined a small but growing group of states to pass paid-family-leave laws, but there is currently no such law at the federal level. About 60% of Alzheimer’s caregivers said they faced financial problems because of their role, according to a June survey from the nonprofit advocacy group Us Against Alzheimer’s.
For Daly, these burdens took a toll over time. “With every visit, you watch everything decline,” she says. Researchers and organizations are increasingly recognizing these stresses as a unique area of concern—and some potential solutions are emerging. A September study in Alzheimer’s & Dementia found that mindfulness and emotional-awareness training eases caregiver stress. The National Institutes of Health is also studying how skills and stress-management training, along with social support, reduces depression and improves caregivers’ mental health.
Just talking about the difficulties of their situation can be “life-giving and lifesaving,” says Ruth Drew, a counselor who oversees the Alzheimer’s Association’s caregiver hotline. People often feel guilty complaining to family and friends, but the hotline is staffed by people with firsthand knowledge of Alzheimer’s care. “There’s nothing like talking to somebody else who’s been where you are,” Drew says. Doing so may soon get easier: researchers are exploring the impact of online support groups and live video conferencing between caregivers and Alzheimer’s experts.
“Technology is not the answer to everything, but we’re having to think more creatively,” Fazio says. “The reality is that the demographic shifts and the growing number of people with dementia are going to mean that many more people are impacted by caregiving.”
This appears in the November 05, 2018 issue of TIME.