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Caregiving's Lost Generation: The Nation's Children

When we think of the typical profile of a family caregiver, we don't picture a child of 8 or an awkward teenager -- but as increasing numbers of aging Americans come to need care, more children are stepping in as primary caregivers for a chronically ill or disabled parent, sibling or grandparent.
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When we think of the typical profile of a family caregiver, we think of a baby boomer woman in her early 50s caring for her 75-year-old mother. We don't picture a child of 8 years old or an awkward teenager, but as our society buckles under the increasing number of aging Americans needing care, more children are stepping in as primary caregivers for a chronically ill or disabled parent, sibling or grandparent.

A landmark study from the National Alliance for Caregiving (NAC) showed that as many as 1.4 million children between the ages of 8 and 18 are caregivers. The reasons for caregiving among these youth range from mental health issues to physical disabilities to chronic illness such as COPD, multiple sclerosis or diabetes. However, the No. 1 reason -- approximately 18 percent -- younger children become caregivers is because they care for a loved one with Alzheimer's disease.

When we think of caregiving and children, we think of the children needing the care, not providing the care. While 75 percent of adults report that they felt they do not have a choice on whether to become a caregiver, 100 percent of youth caregivers really have no choice. Psychologists call the phenomenon of children becoming caregivers "parentified" -- a role reversal where the child becomes the parent, giving up nurturing to be the nurturer.

According to NAC, this "lost generation" of young caregivers falls into three age groups: Three in 10 are ages 8 to 12; more than one-third are ages 12 to 15; and 3 in 10 are ages 16 to 18. Youth caregivers typically live in lower income households where 70 percent are caring for a parent or grandparent -- with two-thirds of these caregivers living in the same home as the one for whom they are providing care. In the 2010 U.S. Census Bureau data, 6.6 million children live in a household with a grandparent, representing approximately 16 percent of all U.S. households. Today we have approximately 35 million Americans over the age of 65 but in 25 years, that number is expected to double to 70 million. As our older population grows with aging baby boomers, more of these youthful caregivers will be pressed into service.

To date, there is only one such organization in the U.S. providing support and services to youth caregivers and it currently operates on a regional basis. Founded in 1998, the American Association of Caregiving Youth (AACY) provides in-school therapeutic support groups, tutoring, mentorship and extracurricular activities. Programs range from recreational, such as overnight camps, to educational support, providing links to community resources and help with college and scholarship applications. The program operates in Palm Beach County, Fla. for middle- and high-school age caregivers, but AACY is reaching out to other school districts with plans to replicate the program in communities across the U.S.

"Caregiving youth are the hidden providers of our health care delivery system," says Dr. Connie Siskowski, founder and president of the AACY. "No one wanted to believe the statistics of children under age 18 providing the primary care for a loved one but it's real and it's a growing phenomenon with our rapidly-aging population."

Siskowski says these caregiving youth struggle with stress over their role -- at home they have to play an adult, but at school they have to revert back to being a child and this causes confusion and frustration for these kids. Often these child caregivers are sacrificing their own developmental needs, which can result in their loss of autonomy, activities outside the home and the love and care they should receive from a parent.

One young man, now 22, began his caregiver role at age 13 taking care of a beloved grandfather. His father had to take a job in another state and his mother was a drug addict who abandoned her young son and family. The young boy lived with his grandfather, who suffered from dementia and congestive heart failure, and quickly became his primary caregiver.

He wrote on the AACY blog:

I did everything for him -- cook, clean, do his laundry -- his illness eventually got to the point where he couldn't even shower on his own, or go to the bathroom on his own. Do I wish I was able to be a young adult and do whatever it is young adults do, yes? I wish I could have lived the childhood I feel like I was supposed to live. He was my family, my dad, mom, grandma, grandpa, friend and confidante all in one person.

The young boy had to drop out of school because of the constant care his grandfather needed but as with most caregivers, he saw his role as a labor of love. "I don't regret any of the choices I made to take care of him, because it made me the person I am today. My love for him, and seeing him happy and healthy meant more to me than anything. If I could go back in time, I wouldn't change a thing."

Typically, these youth caregivers are not emotionally equipped to deal with this level
of responsibility, and it can affect other aspects of their lives. A report by Civic Enterprise, funded by The Bill and Melinda Gates Foundation, "Silent Epidemic: Perspectives of High School Dropouts," showed 22 percent of children who drop out of school for personal reasons do so because they have taken on family caregiver responsibilities. Siskowski says while these youth caregivers should be concentrating on their schoolwork and classroom interaction, instead they are worried about whether their grandmother took her medications on time. She says school problems often begin with these caregivers being late to school -- for instance, they missed the bus because they had to feed their grandfather.

"Often the contributions these youth caregivers make are even overlooked by other family members, especially a working parent who is overstressed themselves," says Siskowski. What adds to the dilemma according to Siskowski is, "The types of family health issues these youthful caregivers face are beyond the purview of the current school system."

How children cope with these caregiver responsibilities can range from sadness to anxiety to resentment. They are even more hidden and isolated from society than adult caregivers, and their peers and teachers often have no idea these children have a full-time job as caregiver. Children deal differently with stress than adults because they lack the coping skills adults have developed. According to the AACY, depending on the age and developmental stage of these youths, the stress of caregiving may cause behavioral problems such as tantrums, acting out, or thumb sucking, or engaging in risky behaviors such as drug or alcohol abuse, anti-social behavior and teen pregnancy. These caregiving youth have a higher risk for feelings of depression than their peers, and they also suffer higher incidence of co-dependent relationships and often have difficulty maintaining relationships in their adult lives.

However, there can be some positive results to having children take on more of a role to help care for an aging or ailing loved one. The caregiving child can derive a sense of purpose, belonging and usefulness. Siskowski says youth caregivers also learn at an early age about empathy, and they develop valuable skills in organization, time management and multitasking that serves them well as adults.

This article is an excerpt from Sherri Snelling's book, A Cast of Caregivers - Celebrity Stories to Help You Prepare to Care.

For more by Sherri Snelling, click here.

For more on caregiving, click here.