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USA TODAY sat down with Ruth Drew of the Alzheimer’s Association to discuss family conflicts due to caring for a relative with dementia.
USA TODAY
Changing U.S. demographics will change the proportion of Americans who suffer from Alzheimer’s and other dementia-related diseases. The diseases are forecast to hit Hispanics and African Americans hardest.(Photo: Thinkstock)
Family battles among siblings are among the most common sources of strain and stress when caring for aging parents with dementia, according to a survey by the Alzheimer’s Association.
Here are some tips for families struggling to care for a loved one with dementia:
Planning: A person with dementia can complete legal directives after diagnosis if their judgment and decision-making are still intact, according to the Alzheimer’s Association. Living wills and other legal documents can help guide end-of-life decisions.
Without such planning, families often disagree on the level of care for a loved one.
“Family members can really struggle about knowing what the right thing is to do,” says Ruth Drew, the Alzheimer’s Association’s director of information and support services.
Far-flung families: Siblings in different cities or states sometimes second-guess family members who live closest to a loved one with dementia. A common scenario: An out-of-state sibling visits for a short period and tries to fix a situation.
That can create tension between the visitor and the person providing daily care.
“People who live far away may feel guilty,” Drew says. “It is not uncommon for someone to come into town, assess the situation and have a lot of suggestions. They may step on toes of people who are already there.”
Drew says families that communicate and divide responsibility can avoid such problems. One family member, for example, might be more comfortable paying bills and managing finances of an elderly loved one. Others can take charge of hands-on care and driving to medical appointments.
More: The hidden side of dementia: Families fight over care, end-of-life decisions, finances, estates
More: CDC: Alzheimer’s disease, dementia cases to double by 2060
More: First female Supreme Court Justice Sandra Day O’Connor announces she has dementia
More: ‘Highly fit’ middle-age women nearly 90% less likely to develop dementia decades later, study finds
Technology: Many family members caring for loved ones have turned to social media and apps for help. The online community Lotsa Helping Hands operates an online calendar that lets caregivers post requests for tasks such as meal preparation or rides to medical appointments. The app Care Zone allows users to manage medications, request pharmacy refills or even shop for Medicare plans.
Financial help: While emotional and physical stress are top concerns, 69 percent of caregivers are worried about the financial burden of caring for a loved one, according to the Alzheimer’s Association. Medicare does not pay for in-home caregivers, but there can be other community resources. All communities in the United States have a designated Area Agency on Aging, which provides programs and services for older adults. You can search for your local area agency here.
Respite care: Caregiving duty often falls to a spouse or a child, and these people often feel overwhelmed. Four out of five caregivers want more help from family members, the Alzheimer’s Association says.
AARP recommends caregivers compile a list of friends and family who can provide substitute care. Another option: Call a family meeting and emphasize the importance of giving a caregiver an occasional break.
The federal Older Americans Act provides limited funding for respite care, referral and counseling services. Contact your local Area Agency on Aging for more information.
Sources: Alzheimer’s Association, AARP and Department of Health and Human Services
More: The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories
More: The Long Goodbye, Part 2: When dementia sets in, the ‘new normal’ isn’t normal at all
More: The Long Goodbye, Part 3: What we’ve learned about dementia and what we’re facing
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