Alzheimer's Caregivers Need Support, Survey Finds

While most caregivers say that the task of providing care for someone living with Alzheimer's or another form of dementia should not fall to one person, far too many caregivers are doing it alone, a survey by the Alzheimer's Association finds.

Released in conjunction with the beginning of Alzheimer's & Brain Awareness Month, the survey (15 pages, PDF) found that although 91 percent of current and previous caregivers agreed that different people should be responsible for different tasks, 64 percent felt isolated or alone in their situation, while 84 percent said they would have welcomed more help from family members. According to the survey, the most commonly cited reasons for not helping out with caregiving were feeling that another family member had already taken on the responsibility (74 percent) and not living in the same area (62 percent). Among caregivers whose relationships with the person for whom they were caring or with other family members became strained as a result of their caregiving role, the top reason was that they felt their efforts were undervalued by family members (43 percent) or by the person being cared for (41 percent).

"There are currently fifteen million Americans providing unpaid care for someone with Alzheimer's or dementia, and this survey shows that we must alleviate the weight on the shoulders of these individuals," said Ruth Drew, director of family and information services at the Alzheimer's Association. "It's a problem that's only going to get worse. As life expectancies get longer and the number of older Americans grows rapidly, so too will the number of individuals diagnosed with Alzheimer's and family members affected."

The survey also found that while 59 percent of survey respondents — both with and without caregiving experience — fear being diagnosed with Alzheimer's or another form of dementia, and 70 percent fear not being able to care for or support themselves financially should they develop Alzheimer's, only 24 percent had planned financially for their families' future caregiving needs, while just 20 percent had discussed their wishes with their spouse or family members. And while74 percent said they would prefer a paid caregiver to a family member, only 15 percent had planned financially for that scenario.

"Very few people are financially prepared for the cost of caring for someone with Alzheimer's, which is made worse by the fact that most Americans lack adequate savings for retirement, and many have none," said Beth Kallmyer, vice president of constituent services for the Alzheimer's Association. "The added burden of Alzheimer's care on families that have neither planned for it nor saved for basic retirement needs is going to directly impact them and the public healthcare system. With a large segment of the American population reaching high-risk years for Alzheimer's, we're entering a crisis."