New Alzheimer's disease survey reveals children of sandwich caregivers assist with loved ones' care

Results from the third annual Alzheimer's Foundation of America (AFA) ICAN: Investigating Caregivers' Attitudes and Needs Survey suggest that Alzheimer's disease care is a family affair.

Most “sandwich caregivers” – the parents or guardians of children under 21 who also care for an aging parent, other relative or friend with Alzheimer's disease – say their children are assisting with caregiving responsibilities that range from attending doctors' appointments to feeding and dressing their loved ones.

Survey results released today found that about three in five caregivers say their children aged 8 to 21 are involved in caring for a loved one with Alzheimer's disease. Of the caregivers who feel they do a good job balancing the care of their loved ones with Alzheimer's disease and children under 21, more than one-third (36%) specifically cited support from children as a contributor to their success.

Among children, ages 8-21, who are involved in caregiving, many are reported as taking on significant tasks:

• About one-third of young adults (ages 18-21) assist with doctors' appointments;
• 42% of young adults assist with transporting loved ones with Alzheimer's disease;
• About one-quarter of young adults and teens (ages 13-17) assist with activities of daily living, such as feeding and dressing;
• Nearly 90% of pre-teens (ages 8-12) visit and entertain a loved one with Alzheimer's disease (please use caution when interpreting results due to small base size);
• Approximately 85% of teens pay visits to the person 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,” said Eric J. Hall, AFA's president and chief executive officer.

Due to the number of teenagers in caregiving roles, AFA recently stepped up its AFA Teens division, which educates and provides resources for these youngsters. AFA introduced a newly designed Web site, www.afateens.org, specifically for teens and the first of its kind “AFA Teens for Alzheimer's Awareness College Scholarship.” The organization is also starting up AFA Teens chapters nationwide.

It is estimated that the 5.7 million Americans caring for aging relatives and loved ones also have children whom they care for. With the United States population aging rapidly, the need for family caregivers will markedly increase in the years ahead.

• 70% of sandwich caregivers said they need more help caring for the person with Alzheimer's disease as compared to 33% who say they need more help with their children.
• Nearly two-thirds (63%) would 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,” said Lesley Blake, M.D., clinical associate professor of psychiatry, University of Washington School of Medicine, Seattle, WA. “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.”

“Proper diagnosis and treatment are crucial,” said Dr. Blake. “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 found that 77% of sandwich caregivers were not aware that combination drug therapy can be used to treat Alzheimer's disease.

The survey also showed that individuals received a delayed diagnosis – typically for two years. Caregivers who care for a loved one whose diagnosis was delayed for a year or more say the delay was most often due to lack of caregiver familiarity with symptoms or insufficient knowledge about Alzheimer's disease, with about half saying that they thought Alzheimer's symptoms were normal signs of aging.