Zoey Wade has always been close to her grandmother, Ruth Ketcham, now 92. As a child, she and her sister would fight over who could sleep over at Ketcham's house, Wade says. After Ketcham was diagnosed with Parkinson's disease, Wade, who was then in high school, became more involved in her care. She slept at her grandmother's house several nights a week in case Ketcham had any hallucinations or delusions. She also cooked meals, cleaned the house, washed and dressed her grandmother, gave her medications, and visited with her. “I have no regrets spending so much time with her over the years,” says Wade. “She needs us, and I'm glad I've been there for her.”
Even today, as a 23-year-old student finishing her college degree in communications, Wade visits her grandmother frequently. Her family is also very involved in Ketcham's care—especially her mom, who is a nurse and Ketcham's primary caregiver. Wade's younger sister and cousin, who live nearby, also help out.
After Ketcham's health declined, the family hired a live-in health aide to provide 24-hour care. Wade stopped sleeping over because she felt she didn't have enough experience to manage her grandmother safely. She also found it too difficult emotionally to watch her grandmother's health decline. “I'd rather spend more positive time with grandma by joining her for meals and watching baseball on TV with her,” she says.
Wade is one of a growing group of young people who care for parents, grandparents, and loved ones. Dubbed “youth caregivers,” they range in age from 8 to 18 and provide help to relatives on a regular basis. A 2005 report from the National Alliance for Caregiving and the United Hospital Fund estimated this “hidden population” at 1.4 million people nationally.
The estimate should be much larger, says Connie Siskowski, RN, PhD, president of the American Association of Caregiving Youth (http://aacy.org) in Boca Raton, FL, whose organization is working to update this figure. She notes that the study is more than a decade old. About 7.7 million grandparents live with their grandchildren, she says.
That number also seems low to Nancy Orel, PhD, professor of gerontology at Bowling Green State University in Ohio, who has studied the children-as-caregiver trend and multigenerational households. In 2009, according to the Pew Research Center, nearly 12 million households were multigenerational, consisting of at least two adult generations. Slightly more than a third of multigenerational households, 4.2 million, included three or more generations.
“That means there's a strong likelihood that children are providing some assistance or care if the grandparent is over the age of 70,” says Dr. Orel. “Multigenerational households will increase further as the population ages and young adults move home, which means more and more young people will be involved in caregiving.”
VARYING LEVELS OF CARE
The ways youth caregivers help their relatives vary considerably based on age and ability and whether an adult is involved. Older youth caregivers may be primary caregivers and are sometimes forced to leave school or postpone college and professional ambitions. Caregiving activities can range from cooking meals, cleaning, and driving relatives to doctors' appointments to bathing, dressing, and feeding.
Even younger children can play an important role in caring for a relative. “Getting an occasional glass of water for a grandparent is not necessarily a caregiving task, but if a grandchild is asked to provide a glass of water on an hourly basis so grandma doesn't become dehydrated, then that becomes a caregiving job,” explains Dr. Orel. “Some grandchildren take on a lot of responsibility.”
She remembers meeting one young grandchild who was the only one in her family who could understand the grandmother because her speech was extremely unclear. “She became the interpreter and provided a very important need for grandma and the entire family,” says Dr. Orel.
PATHS TO CAREGIVING
Young children don't always choose to become caregivers. Circumstances often dictate it, says Dr. Siskowski, who was a young caregiver herself. After her parents divorced when she was 11, she moved in with her grandparents and started doing almost everything for her grandfather, who had congestive heart failure. Her mom was busy working, her grandmother didn't have the right temperament for caregiving, and her brother was more into physics. After two years of helping her grandfather, she found him dead in his bedroom.
“What happened to me happens all the time,” she says. “It's not always a choice for children. Often they are forced into caregiving because no one else is there.” For example, a grandparent might move in with a family in which parents work and can't afford to hire a home health aide. The young child or teenager may take on responsibilities before or after school because no adult caregiver is at home.
Oftentimes, youth caregivers bring a sense of wonder and fun to their interactions. They are also a good distraction from the disease, says Dr. Orel. “One child I met played school with his grandma. He would be the teacher and she was the student, and they had great fun together.”
Ashley Garcia, 15, visits her grandmother, who is in the early stages of Alzheimer's disease, every weekend in West Palm Beach, FL, about an hour away. The two of them share a love of horror movies and will watch them late into the night, keeping each other company during the scariest scenes.
Many youth caregivers are also tech-savvy and can help their loved ones with internet research or to stay in touch with family and friends using social media. Katie Campagna, 25, started a Facebook page for her aunt, who has Alzheimer's disease and lives in Florida. Campagna regularly updates the Facebook page with pictures and videos of her funny and eccentric aunt. This way her aunt can keep in touch with her twin sister, who also has Alzheimer's disease but lives in Maine. “To help combat my aunt's occasional depression, I'll show her the funny videos on her Facebook page, and that makes her happy,” says Campagna.
A GREATER MATURITY
Garcia loves spending time with her grandmother, even though it prevents her from getting involved in school clubs and extracurricular activities. Garcia's mother thinks her daughter has mostly benefited from the experience by taking on more responsibility and developing wonderful memories of her grandmother. Garcia finishes her homework during the week so she has more time on the weekend to spend with her grandmother. “I want to cherish as many moments as I can with her,” she says.
Ruth Drew, director of family and information services at the Alzheimer's Association, has witnessed firsthand how well some children have matured through their caregiving experiences. She remembers one young man who helped feed and bathe his grandfather and get him ready for bed. “The experience made him see the world differently and influenced his interest in pursuing social work as a career.”
Garcia says she has developed more patience by helping her grandma. “I listen to what she needs and try not to be impatient when she asks for something and then forgets that she asked for it a few minutes earlier.”
Wade says she's even more grateful for her family and that she is better at living in the moment. Her mother agrees. “I believe my daughter will look back and be so happy to have all these memories of time spent with her grandmother over the years.”
Dr. Orel recalls meeting a 12-year-old caregiver who talked about her ability to change negative thoughts about caregiving into positive ones. Instead of resenting her role, she realized how instrumental she was in the well-being of her grandparents and the family. “She recognized she had special skills and talents, which helped her see the situation in a more positive way,” Dr. Orel explains.
Drew has met several people whose career choices were inspired by their childhood caregiving experiences. One of them, who now runs a home health and hospice company, took care of older family members and friends when she was young. “As a teenager, she would pick up groceries for neighbors and give them rides to church on Sundays,” says Drew. “She learned early on that she loved working with seniors, and it became her life's work.”
Another person she knows was a teenager when her mother was diagnosed with early-onset Alzheimer's disease. As a high school senior, she helped her mom get dressed, eat lunch, and bathe. “This young woman ended up studying medicine in college,” says Drew. “She said part of her inspiration came from caring for her mother.”
Help for Youth Caregivers
Caring for a relative at a young age isn't always a positive experience. Here's how to guard against the pitfalls.
Just like adult caregivers, young people juggle many demands, including school, homework, sports, activities, and spending time with friends. If the demands of caregiving are overwhelming, children may miss out on after-school activities or drop out of school altogether. This expert advice may help prevent that.
LET CHILDREN BE CHILDREN
Often when children become caregivers they also take on a parenting role. “You expect your parents to be parents, and it's challenging when they aren't anymore,” says Leanna Bidwell, who was 15 when her then-75-year-old father was diagnosed with Alzheimer's disease. “That's confusing when you're a teenager.”
It was hard for Zoey Wade to be the adult when her grandmother began to experience Parkinson's disease-related hallucinations and delusions. Her mom recognized that challenge, but was proud that her daughter was able to step up.
Ideally, children should have the emotional support of their parents, and parents should recognize the important role their child plays in assisting with care. Children shouldn't be forced to be the adult in a multigenerational caregiving environment, says Nancy Orel, PhD, professor of gerontology at Bowling Green State University in Ohio. “Children need to remain children and have opportunities to interact with their friends.”
Involve children in age-appropriate responsibilities, says Ruth Drew, director of family and information services at the Alzheimer's Association. “For example, asking your child to play checkers with grandpa while you tend to other responsibilities can strengthen emotional connections, while also helping your child adjust to changes brought on by the situation.”
HELP CHILDREN PROCESS NEGATIVE EMOTIONS
Many youth caregivers feel anger and resentment about their relatives' disease and the effect it has on their lives, says Dr. Orel, who has interviewed many youth caregivers.
Bidwell remembers how frustrating it was as her elderly dad was increasingly affected by Alzheimer's disease. “It was hard for me as a teenager, and I got angry and questioned why this was happening to our family.”
It helped to talk to close friends and blow off steam, she says. “I think parents should seek counseling for their children to let them talk about their feelings.”
Bidwell admits that she still feels upset with her dad for not being there when she needed him and for dying when she was so young. “I understand his disease was something he couldn't control, but those feelings can linger for a long time. Counseling might help to work out some of those issues as they occur, rather than spending years trying to resolve them on your own.”
Finding the humor in situations can also help manage the anger, says Bidwell. “We really focused on that with my dad, and it definitely helped. It was better than getting stressed out over his behavioral problems.”
Anger and resentment can be signs of burnout, says Dr. Orel. So can losing interest in school activities, sports, or hobbies, feeling sad or hopeless, having trouble sleeping, losing or gaining weight, and experiencing physical exhaustion. To prevent burnout, avoid assigning tasks that are beyond the young caregiver's physical and emotional abilities. Also, be sure caregiving doesn't interfere with spending time with friends.
“Youth caregivers are not adults. They should not be expected to do adult work. That can lead to major consequences, such as burnout,” says Dr. Orel.
GUARD AGAINST DIFFICULTIES IN SCHOOL
All too often, youth caregivers falter under the weight of caregiving responsibilities and stresses—and many have trouble focusing in school and finishing homework. In fact, among young adults who dropped out of school, 22 percent did so to care for a family member, according to a 2006 report by Civic Enterprises, a policy research group in Washington, DC. “We know that dropout is a major problem among youth caregivers. That's why it's important for them to get the help they need at school to stay on track,” says Connie Siskowski, RN, PhD, president of the American Association of Caregiving Youth (http://aacy.org) in Boca Raton, FL.
“People don't understand how caregiving contributes to dropout rates, so raising awareness is a first step,” says Dr. Siskowski. The next step is to encourage parents, teachers, and school administrators to rally around young caregivers and determine the kind of help they need. Another step is connecting youth caregivers with others like them and fostering relationships with community support services to strengthen caregiving families.
Protecting Youth Caregivers
A bill of rights can help keep caregiving from derailing the lives of children and young adults.
Caring for loved ones can be challenging for young caregivers and can disrupt their lives, no matter what their age or circumstance. These guiding principles, adapted from the Charter of Young Carers in the United Kingdom, may protect them in their new role.
Youth caregivers have the right to…
* Be children as well as caregivers
* Attend schools that give them the help they need to get an education
* Have fun and enjoy friends
* Have time off from caring
* Be part of families with well-supported parents, guardians, or other family members
* Live in a safe environment and be protected from harm, including any harm from caregiving activities
* Be listened to and supported by the people who support their parents, grandparents, siblings, and other family members for whom they care
* Have an assessment of what they need as individuals without any assumptions or judgments being made about them
* Information about any health problems their family members may experience
* Advocacy and complaints procedures that they can understand and that work
* Stop providing care when they wish to