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When Nancy Daly helped take care of her mother, who died of Alzheimer's, the stress was so great that she often locked herself in a bathroom and cried in a towel. For more than two years, Daly has regularly returned from his California home to his mother, Maryland, without any recognition. "It was as if all my childhood had been erased, so that she did not know me," says Daly, 59 years old. "But I had to bite my teeth and bear it. It was my job to be there.
Daly's situation is probably familiar to many of the 16 million Americans who provide unpaid care to someone with Alzheimer's disease or dementia. Since the tasks involved are so intimate and expensive to outsource, caregiving is often the responsibility of family members rather than professionals. And the number of caregivers is expected to increase: A recent study estimates that Alzheimer's diagnoses will more than double over the next four decades as the US population ages.
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Research shows that Alzheimer's caregivers face a heavy physical, financial and mental burden. In a poll conducted in October by the Associated Press – NORC's Center for Public Affairs Research, about one-third of informal caregivers reported having a hard time managing their own health and not consulting their doctors – even though They were sick or injured – because of their tasks. This is particularly worrisome since caregivers are themselves an aging group: 34% are now 65 or older.
Other research suggests that caregivers with dementia exhibit higher levels of stress and depression than other types of caregivers. This is probably because of the progressive nature of Alzheimer's disease, which ultimately requires care almost 24 hours a day, says Elena Fazio, a health scientist administrator at the National Institute on Aging. "There is no possibility of respite," she says. "[People with Alzheimer’s] have a host of behavioral symptoms "- such as wandering and mood swings -" that make the thing more complicated "says Fazio.
Being a caregiver is also expensive and can hurt your career. Massachusetts joined this year a small but growing group of states to introduce laws on paid family leave, but there is currently no such law at the federal level. About 60% of Alzheimer's caregivers reported having financial problems because of their role, according to a survey conducted in June by Us Against Alzheimer's non-profit advocacy group.
For Daly, these charges have had an impact on time. "Every visit, we see everything decline," she says. Researchers and organizations are increasingly recognizing these stresses as a unique concern – and some potential solutions are emerging. A September study on Alzheimer's and dementia found that mindfulness and emotional awareness training alleviate the stress of caregivers. National Institutes of Health are also studying how skills and stress management training, as well as social support, can reduce depression and improve the mental health of caregivers.
Ruth Drew, a counselor who oversees the Alzheimer's Association's Caregiver Help Line, discusses the challenges of their situation. People often feel guilty about complaining to their family and friends, but the hotline is made up of people with direct knowledge of Alzheimer's care. "There is nothing better than talking to someone who has been where you are," says Drew. It may soon become easier: Researchers are studying 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 need to think more creatively," says Fazio. "The reality is that demographic changes and the increasing number of people with dementia will mean that many more people will be affected by caregiving."
This appears in the November 5, 2018 issue of TIME.
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