Children, Teens Face Burdens as ALS Caregivers

People with amyotrophic lateral sclerosis (ALS) relied on children and teens in the household for help, presenting unique developmental needs for young caregivers, a survey showed.

Youth spent an average of 5 hours a day providing care for their family member with ALS, handling an average of 12 tasks, including help with medications, respiratory equipment, and transferring in and out of bed, reported Melinda Kavanaugh, PhD, of the University of Wisconsin-Milwaukee, and co-authors in Neurology.

"With ALS, a fatal disease where people rapidly lose their ability to care for themselves, caregiving can be intense and demanding for adults, yet little attention has been paid to children and youth who are serving as caregivers," Kavanaugh said in a statement.

"Our study found that youth are intricately involved in all areas of caregiving. They feel isolated and have little training or guidance in their care," she added. "Yet, they found ways to manage their care burden and said that helping made them feel good about themselves."

The National Alliance for Caregiving reports that, across all diseases, about 1.4 million children provide care for a family member, most often a parent or grandparent. Of all households with a child 8 to 18 living there, 3.2% include a child caregiver. Caregivers for people with ALS cope with rapid disease and escalating care demands, and may experience burdens and depression in ways that are different than what other caregivers experience, Kavanaugh and colleagues noted.

To conduct their study, they used an online survey sent out through ALS Association chapters to identify people with ALS who had children or adolescents (ages 8 to 18 years) living with them. Of 63 families identified, 93% said a family member under age 19 helped care for the ALS patient. From this group, researchers conducted telephone interviews with 38 children and teens.

Most adults said they relied on children for care because they were unable to pay for outside help. About 82% of youths were caring for a parent; 18% were helping with a grandparent, aunt, or cousin.

While adults said they appreciated young caregivers' efforts and were grateful, some expressed sadness or feelings of being a burden. Youths reported that caregiving made them feel good about themselves, but also feeling guilty when not helping.

Of child and teen caregivers:

• 68% said they needed more information about ALS
• 50% wanted to connect with other people their age to talk about ALS
• 50% said it was difficult to explain ALS to their friends
• 39% expressed concerns about talking about ALS with other family members

To deal with being a caregiver, 63% of youths said they engaged in certain coping mechanisms, like being active, writing, playing video games, talking with friends, or crying.

"Youth caregivers deserve recognition and support, which they are often denied if we fail to ask about their involvement in caring for individuals with ALS," observed Lauren Treat, MD, of the University of Colorado in Aurora, in an accompanying editorial.

"Neurologists and ALS care teams should be mindful to ask whether youth are involved in caregiving, thereby starting to reduce the stigma and isolation that families experience," Treat wrote. "The results of the present study add weight to the need for collaboration between social and medical care providers in the clinic, so that family systems and supports are explored in the context of whole-person care."

While small sample size is a limitation of the study, "the high proportion of youth acknowledged as caregivers likely reflects a phenomenon that is widespread," she added.

All families in the study were connected to ALS Association chapters and may be different than ones who don't have access to services through the organization, the researchers noted. Most participants were white and results may not represent other groups. Adults may have been present when the children and teens were interviewed by phone, which may have influenced responses, Kavanaugh added.