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Posted: April 22, 2008

More Alzheimer's Caregivers Turn to Kids to Help with Care

Caring for loved ones with Alzheimer’s disease is proving to be a family affair, with children as young as 8 helping their often-exhausted parents care for an elderly relative with the mind-robbing condition, according to a new caregiving survey.

The Alzheimer’s Foundation of America reports that young children help their middle-aged parents care for an aging relative with Alzheimer’s in three of every five cases surveyed. These youngest caregivers are often called on to help with a wide range of duties, from feeding and dressing an Alzheimer’s relative to attending their doctor’s appointments.

The findings are contained in AFA’s just-released third annual survey ICAN: Investigating Caregivers’ Attitudes and Needs.

The surveyed headlined its finding that 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 reporting that their children are actively involved in the family’s Alzheimer’s caregiving.

In more than a third of the cases (36%), they said that the care provided by their children between the ages of 8 and 21 was instrumental in their overall caregiving success in balancing this most-demanding disease and their own family life.

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;

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," said Eric J. Hall, AFA’s president and chief executive officer, adding:

"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."

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 website 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.

In other survey findings, the AFA said Alzheimer’s "sandwiched" caregivers are often caught up in a web of wanting more support for themselves and their children. An estimated 5.7 million Americans caring for aging relatives also have children they care for, AFA said. As a result: 

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 Dr. Lesley Blake, clinical associate professor of psychiatry at the University of Washington School of Medicine in Seattle. "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 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 often received a delayed diagnosis typically two years later than might have been possible. Caregivers of loved ones whose diagnoses were 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, with about half saying that they thought Alzheimer’s symptoms were normal signs of aging.

Additional key survey findings can be found at the Alzheimer's Foundation website.

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