New Survey: ‘Sandwich Caregivers’ Rely on Children to Help with Loved Ones
I frequently have the opportunity to visit families in their home environments, observing the day-to-day interactions of caregivers with their loved ones with Alzheimer’s disease. The insight into the enormous responsibilities and challenges is overwhelming. And, at times, even more overwhelming than others. While I empathize with every caregiver, what truly touches my heart is a scenario like the one I witnessed in New York recently—a 16-year-old involved in very personal caregiving responsibilities, like assisting with toileting, dressing and feeding.
Unfortunately, this situation is being played out in homes across America. Alzheimer’s disease care is a family affair, and often one that involves children under age 21. A new survey, Investigating Caregivers’ Attitudes and Needs, conducted for the Alzheimer’s Foundation of America (AFA) and released today shows the impact of this brain disorder on the sandwich generation—the parents or guardians of children under 21 who also care for an aging parent or other relative or friend with Alzheimer’s disease.
Three in five sandwich caregivers say their children help care for loved ones with the disease—with activities of daily living such as feeding and dressing, as well as assisting with doctors’ appointments and entertaining their loved ones. More than one-third of caregivers credit the support of their children as a contributing factor to being able to successfully juggle their role as sandwich caregivers.
The survey bears out what we’ve known all along. It takes a lot more than one set of hands to care for someone with Alzheimer’s disease. Caregivers need the support of others. While children are thrust into roles that are way beyond their years, they are giving their parents incredible assistance—not only practical help, but also vital emotional help.
Even with this, sandwich caregivers are strapped. Clearly, the demands of caring for a loved one with the disease overshadow even that of caring for children. AFA’s survey found that 70 percent of caregivers would like more help with caring for their loved one with Alzheimer’s disease, while 33 percent want more assistance caring for the kids.
So, with children stepping up, the circle for support widens. Not only do sandwich caregivers need to reach out for help, but so, too, do children who are involved in caring for loved ones. Their daily lives, their family dynamics are dramatically different than the students sitting next to them in the classroom or out partying on Friday night. One mom told me that if anything good has come out of her husband’s disease, it is the maturity that her children have gained and the family bonds that have been strengthened. Teenagers who have reached out to AFA’s division for teens, AFA Teens, sadly express a loneliness…a sense that their peers don’t understand what they’re going through.
How could they? In reality, how could anyone of any age understand this caregiving role, the heart break, the responsibilities and the dedication unless someone has walked in the same shoes?
That’s why it’s so important to connect with others, especially others of the same generation.