Of the 16.1 million family members and friends who care for people with Alzheimer’s disease and related dementias in the United States each year, approximately 1.4 million are children between the ages of 8-18. Why would a child be required to take on the responsibility of caregiving? When there is no one else to do the job, children oftentimes take on the responsibilities, stepping into the role that is commonly referred to as a “default caregiver.”
Learn more about child and youth caregivers and the organizations that provide education and support to them and their families.
Child and Youth Caregiving
Caregiving affects each child differently; the impact can be both good and bad. Oftentimes, children who are caregivers become super-achievers. They commonly go on to become caregivers or healthcare professionals in their adult lives. Others may drop out of school because they carry resentment toward having to give up their childhood to care for their loved one.
What do the experts say about the impact on children who care for a family member with Alzheimer’s? In an interview with U.S. News, Connie Siskowski, President of the American Association of Caregiving Youth (AACY), states:
“We, as adults, are supposed to be taking care of children. “They’re not supposed to be taking care of us. What goes on behind closed doors nobody really knows.”
Siskowski shares with U.S. News that she was a child caregiver for her grandfather at age 10. “My grandfather and I were just really, really close,” she says. “Nobody else was involved to the extent I was… Also, I loved him so much. It was just like a natural thing to do.”
The Life of a 10-Year-Old Caregiver
In the world of child and youth caregiving, children may take on a wide range of responsibilities. Some may primarily take on the household chores such as cleaning or shopping. Others simply fill in, keeping a disabled family member company. Yet, in other situations, a child may take on the role of full-time caregiver, helping their loved one bath, get dressed, go to the toilet and more.
It’s hard to imagine someone so young taking on such a grownup role in life. But, it is a reality for over a million children in the U.S.
In fact, approximately 1/3rd of all youth caregivers are between the ages of 8-11 and nearly 40% are ages 12-15.
They take on caregiving jobs such as:
- Giving emotional support
- Giving medications (including injections)
- Helping with mobility
- Implementing the doctor’s orders
- Talking to health care providers
Siskowski knows first-hand how troubling caregiving can be through the eyes of a child. She explains that she was uncomfortable performing many tasks required by her grandfather. She goes on to say that she was completely unprepared and untrained for many aspects of the caregiving job.
“I went in to give him his medicine at 2 a.m.,” she recalls. “When I did, I found him dead. That was traumatic,” Siskowski stated.
The experience motivated Siskowski to start AACY, the non-profit organization aimed at supporting child and youth caregivers. AACY offers children and their family members academic resource assistance, access to summer camps – created to help young caregivers connect with other children in similar situations – and financial aid.
Resources for Child and Youth Caregivers
The AACY program provides many services through in school and out of school programming. The primary goal of AACY is that no child should ever have to drop out of school because of caregiving responsibilities.
The AAYC also established the Caregiving Youth Project, aimed at raising awareness for healthcare professionals as well as raising awareness in the school system.
The agency provides services such as:
- Educational and fun activities
- Family resources
- Lunch-and-learn sessions
- Overnight camping and fishing
- Tutoring for special needs
- Skills-building classes
- Support groups
There are several other organizations that provide education and support to child caregivers and their family members, including:
- Alateen: This organization offers support groups for children of alcoholic parents.
- AFA Teens for Alzheimer’s Awareness: This is the official teenage branch of the Alzheimer’s Foundation of America.
- The National MS Society: This organization has special programs for children.
Many experts are concerned about the responsibilities of children who are caregivers and advise families to consider every person’s needs (including the child’s).
“Ideally, children will handle tasks that are suitable for their age – not in isolation, but as part of a caregiving team,” psychologist Rosalind Kalb, Vice President of the Professional Resource Center of the National Multiple Sclerosis Society, told U.S. News.
“My guideline is that children shouldn’t be asked to do things that make them uncomfortable or that make them anxious,” Kalb says. The larger issue, she adds, “is whether we’re asking children for something that is just too big for them or too stressful because they need to be able to be children.”
Do you know any child or youth caregivers? What do you think a day in the life of a 10-year-old caregiver should be like? We’d like to hear your thoughts in the comments below.
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