With Alzheimer's, It Takes a Family


Alzheimer's care in the United States is a family affair, a new survey suggests.
Three in five so-called "sandwich" caregivers who look after a relative or friend with Alzheimer's disease said their children help with care duties, ranging from attending doctors' appointments to feeding and dressing their loved ones, according to the third annual Alzheimer's Foundation of America Investigating Caregivers' Attitudes and Needs Survey.
Sandwich caregivers are parents or guardians of children under age 21 who also care for an aging parent, relative or friend with Alzheimer's.
The survey of 559 sandwich caregivers found that among those who feel they do a good job balancing their care of a loved one with Alzheimer's and looking after their children, 36 percent said support from their children is a factor in their success.
Among children aged 8 to 21 who are involved in caregiving:about one-third of young adults (aged 18-21) help with doctors' appointments; 42 percent of young adults assist with transporting loved ones with Alzheimer's disease; about one-quarter of young adults and teens (aged 13-17) help with the activities of daily living, such as feeding and dressing; nearly 90 percent of pre-teens (aged 8 to 12) visit and entertain a loved one with Alzheimer's disease; about 85 percent of teens visit loved ones with the disease.
"Taking care of someone with Alzheimer's disease can be an enormous drain on the caregiver and on family resources. For sandwich caregivers, the problem is even more acute. It is clear that caregiving is a multigenerational concern. Young adults, and even teens and pre-teens, are being impacted in life-changing ways by their caregiving responsibilities," Eric J. Hall, president and chief executive officer of Alzheimer's Foundation of America, said in a prepared statement.
The survey also found that 70 percent of sandwich caregivers said they need more help caring for a loved one with Alzheimer's, while 33 percent said they need more help with their children. In addition, 63 percent said they'd like more information about how to help their children cope when a loved one is diagnosed with Alzheimer's disease.
"A segment of young adults and teens assist with managing the daily needs of individuals with Alzheimer's disease, and a small percent are even called upon to make informed decisions about treatment. It's crucial that they have access to good information sources," Dr. Lesley Blake, a clinical associate professor of psychiatry at the University of Washington School of Medicine in Seattle, said in a prepared statement.
"As Alzheimer's disease progresses, declines in cognition, function and behavior worsen. Both adult and non-adult caregivers need to be educated about what to expect and, more importantly, what to do in these cases," Blake said. "Proper diagnosis and treatment are crucial. Symptoms -- loss of function, decline in cognitive ability and difficult behavior -- can be delayed and caregiver burden reduced through medication therapy, which may include combining medications from two FDA-approved Alzheimer's medication classes."
The survey, funded by Forest Pharmaceuticals Inc., found that 77 percent of sandwich caregivers weren't aware that combination drug therapy can be used to treat Alzheimer's disease. In many cases, respondents said there was a delay -- typically about two years -- in their loved ones' diagnosis of Alzheimer's. In cases where diagnosis was delayed for a year or more, the most common cause was a lack of caregiver awareness about Alzheimer's disease. About half of those caregivers said they believed the disease was a normal part of aging.
It's estimated that more than 5 million Americans have Alzheimer's disease -- about one in 10 of those aged 65 and older and nearly half those 85 or older -- and that number could more than triple, to 16 million, by 2050, according to background information in a news release about the survey.