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Caring for Relatives With ALS Almost a Full-Time Job for Youth: Study
  • Steven Reinberg
  • Posted March 27, 2020

Caring for Relatives With ALS Almost a Full-Time Job for Youth: Study

Kids and teens spend as much as five hours a day helping care for relatives with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, a new study finds.

Although the young people often help with bathing, dressing, eating and other caregiving activities, they may not have enough training or information about the disease, the study authors said.

The researchers found that 8- to 18-year-olds may also be responsible for such things as helping loved ones take medication, get in and out of bed, and cooking meals.

"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," said study author Melinda Kavanaugh, an associate professor of social work at the University of Wisconsin-Milwaukee.

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

The study was based on an online survey and phone interviews of 38 children and teens who provide care for a family member with ALS.

Most were caring for a parent; 18% were helping with a grandparent, aunt or cousin. Most of the adults said they relied on children for care due to cost and inability to pay for outside help.

Both the adult patients and the young caregivers had mixed feelings about the care. Adults said they appreciated and were grateful for the care, but some also felt sad or that they were "a burden."

Most of the children said giving care made them feel good about themselves, but said they also felt guilty when they were not helping, the findings showed.

Among the youth, 68% said they needed more information about ALS; 50% wanted contact with other people their age to talk about ALS; 50% said it was hard to explain ALS to their friends; and 39% had concerns about talking about ALS with other family members.

Most caregivers participated in activities to help them cope, including being active, playing video games or talking with friends.

"These results really highlight the need for training and support for these young caregivers," Kavanaugh said. "Health care providers need to start asking if children are helping with care and provide them with information and access to opportunities for respite and other care services."

The report was recently published online in the journal Neurology.

More information

For more on ALS, visit the ALS Association.

SOURCE: American Academy of Neurology, news release, March 18, 2020
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