When Molly Arnold was 14, her grandmother was diagnosed with Alzheimer’s disease. Her family moved from Houston to Fayetteville, Arkansas so her mother could step in as her grandmother’s primary caregiver. But Arnold had to chip in too, and soon found her teen years consumed with the responsibilities of caregiving.
While her classmates and friends were hanging out, Arnold had to go home and help her mother change her grandma’s diapers. She found it difficult to ask her mom for simple things like a ride to a friend’s house, never wanting to add to her stress and workload. The teen also helped with cooking and cleaning and provided emotional support to her exhausted mother. With no guide for how to handle the situation, the family muddled through it as best they could.
"We quickly found out that people didn't know much about Alzheimer's and there wasn't a lot of resources for us to turn to," Arnold said. While a teen might typically talk to their friends about upsetting experiences like a first breakup or fights with their parents, Arnold’s caregiving responsibilities were a different matter, and made her feel as though she was leading a double life. "Nobody knew how to talk about Alzheimer's or knew what to say."
More Than 1 Million Young Caregivers Estimated in the U.S.
Arnold was far from alone, though to what extent youth are serving as caregivers in the U.S. isn’t well understood. The most recent and only detailed survey of youth caregivers was conducted in 2005 by a partnership between the United Hospital Fund, the National Alliance for Caregiving and research firm Matthew Greenwald and Associates. The study found that there were at least 1.3 to 1.4 million caregivers between the ages of 8 and 18 in the U.S.
The 2005 report pointed out that most studies of caregivers contain no information about youth caregivers. For example, a 2015 National Alliance of Caregiving and AARP report estimated that there are 39.8 million family caregivers in the U.S., but did not include anyone under 18. The 2005 study authors speculated that this was partly because only people over 18 can consent to participate, but also because people generally think of children as requiring care, not providing it.
Carol Levine, director of the United Hospital Fund’s Family Caregiving program and one of the authors of the 2005 study, believes the 1.4 million figure is an underestimate and that the number of children and teens providing care is likely growing.
"The depth of our lack of knowledge is really quite severe," she said. “That was the first and only survey of its kind. And we knew going into it that we wouldn't get the full story because of a number of things.”
Why Children Become Caregivers
Another group of caregivers Levine thinks may be overlooked is children whose parents are struggling with drug or alcohol addiction. Particularly for opioid addiction -- a growing crisis in the U.S. -- children in these situations may need to know how to provide emergency care in the case of an overdose or spend time caring for themselves because of a debilitated parent. Children in these situations likely don’t even realize they're fulfilling a caregiver role and their parents would be reluctant to have them seek help.
Also difficult to count are youth caregivers who are undocumented immigrants or who have undocumented immigrants in their families. Often, these young caregivers avoid speaking with authorities for fear of their immigration status being discovered.
Many families are left with little choice than to provide care for a loved one themselves, and even to involve children, due to limited finances. Financially insecure families often can’t afford residential care or home care and may lack health insurance. And with advances in technology, more intense care that previously might have been limited to hospitals is now being done in the home.
Kid Caregivers Face Long-term Emotional Impacts
The effects of caregiving on children and teens can be profound psychologically, both positively and negatively, and leave lasting impacts into adulthood.
"It doesn't have to be prolonged, it can be short term,” Levine said. “There is something about that experience that stays with kids and in many cases leads to a career that is not directly but indirectly related to the child caregiving experience."
Rebecca Axline, a licensed clinical social worker, works with caregivers in the Houston Methodist hospital and medical research system and has encountered children as young as 4 or 5 years old taking on some caregiving duties in their families.
"I really work hard with trying to encourage families to incorporate children into their loved ones’ lives, but not necessarily doing caregiving unless they absolutely have to," Axline said.
She encourages parents and others who have children participating in caregiving tasks to watch out for signs that they aren’t coping well. These may include not eating enough, not sleeping enough, dropping grades or isolating themselves.
Kids in caregiving roles may internalize fear, stress and even anger about their situation and in turn feel guilty about those feelings. The role reversal of taking care of a parent or other adult could cause them to behave more adult-like than is healthy, robbing them of simple but necessary aspects of childhood development like playing with peers or even misbehaving and making mistakes.
For caregiver families with children, Axline recommends taking steps to keep the kids’ roles age-appropriate -- like not having young kids dress wounds, help with toileting or give medications. She also advises setting boundaries on the time and extent of their involvement in caregiving, while making sure they understand what’s happening and that their questions are answered.
Former Youth Caregivers Pay it Forward
Despite the enormous challenges, many people who were caregivers as children have stepped up as adults to provide support for other caregivers and particularly children. Connie Siskowski spent years caring for her ailing grandfather while her single mother was working two jobs. Her responsibilities steadily increased to the point where she was sleeping in the living room in case he needed help. Ultimately she was the first to see that he had died.
Years later, as she looked back on three abusive marriages, she traced back the issues in her personal life to that early trauma and decided to take steps to help prevent it in other families. Siskowski later founded the American Association of Caregiving Youth in Boca Raton, Florida, the only organization exclusively devoted to youth caregivers.
Her organization provides direct services in south Palm Beach County working in partnership with the local school district. Siskowski began providing resources in one school and has now expanded to 25 middle and high schools, helping caregiving students build necessary skills and giving them a peer group with similar experiences.
The organization also has social workers conduct home visits to help find ways to alleviate the burden on caregiving kids. For example, the group discovered that one student with a sore back was helping lift his brother’s wheelchair, so they found a volunteer to build a ramp.
"Our whole focus is what can we do to reduce the stress of a child so they can learn," Siskowski said.
Caregiving responsibilities can interfere with a child’s studies, even leading to dropping out of high school or not taking their first job, which stunts the child’s personal growth. But on the other hand, Siskowski says that the child caregiving experience can also be an opportunity, not a hindrance.
"If they have a good experience then they're more likely to go into healthcare, and that's a need," she said. “These kids, if supported properly, are just awesome adults."
After four years of caring for her grandmother, Arnold, too, dove in to find ways to help other caregivers. Her grandfather, famed football coach for the University of Arkansas Frank Broyles, died of complications from Alzheimer’s disease this year. The family authored a book together, “Coach Broyles Playbook for Alzheimer’s Caregivers,” and founded the Frank and Barbara Broyles Foundation to support caregivers. Now 29, Arnold is the foundation’s Chief Operations Officer.
"It was very hard place to be for a kid caregiver because there wasn't a lot of resources. My family always tried really hard to allow everyone to express what they could as we were all figuring it out together," she said.
Now, she provides resources and assistance to caregivers across the nation. The foundation has offices in Fayetteville and Oklahoma City, but she and other foundation staff members travel and speak across the country reaching out to families to educate them about the resources available and to let them know they’re not alone.
In addition to her desire to advocate for other caregivers, Arnold’s grandfather has left her with a fondness for football metaphors. "A diagnosis of dementia doesn't have to destroy your family but you can't win a game if you don't know your opponent," she said.