Adult children of parents with ALS may need more support, study finds

When a parent develops amyotrophic lateral sclerosis (ALS), adult children may face heavy emotional pressures and may have difficulty balancing family, work, and personal life, highlighting the need for emotional support and guidance from both healthcare professionals and others who have gone through similar experiences.

“Due to the profound challenges and needs among adult children and the lack of professional support, it is imperative to raise awareness of this unsupported group of relatives who experience needs both in relation to caregiving, family relations and communication as well as psychological distress,” the researchers wrote.

That’s according to a focus group study, “Living Outside the ALS Home – Everyday Experiences, Challenges and Needs of Adult Children with a Parent with ALS,” recently published in the Journal of Social Work in End-of-Life & Palliative Care.

Recommended Reading

June 10, 2026 News by Michela Luciano, PhD

Stanford team wins $13M grant to find genetic causes of ALS

ALS can affect the whole family

ALS is a neurodegenerative disease that gradually damages the nerve cells that control muscle movement, causing symptoms such as weakness, difficulty walking, and problems with speaking, eating, and breathing. Caring for someone with ALS may be emotionally taxing, and caregivers themselves often need some support.

“Adult children living outside the home may react differently, take on different responsibilities and have different needs as they are older than residing children and often have their own children, work and home to care for which may cause other dilemmas and challenges than those of (often retired) spouses or children living within the household,” the researchers wrote.

To better understand how adult children may react, researchers in Denmark conducted online focus group interviews with 16 adults who lived outside the home of a parent with ALS. The participants explained that ALS deeply changed family life as relationships often became focused on the disease.

“When ALS moved into the family was the initial triggering factor that changed the participants’ everyday lives and evoked challenges and needs. This life event evoked a need for understanding ALS and its trajectory and, at the same time, resulted in strong and mixed emotions and dilemmas that the participants had to comprehend, manage and cope with in their everyday lives,” the researchers wrote.

 Communication often centered on the disease

ALS also changed communication within families. Conversations often centered on schedules, medical care, equipment, and planning. Participants felt this reduced meaningful family time. Some said they missed normal conversations with their parents and felt they had already partly lost the parent they once knew because the disease had changed their behavior or ability to communicate.

“I think you lose both of your parents a little bit — because we used to be very close, but because we only talk about the disease and because she’s very affected by it and it’s difficult to talk about anything else, I think it’s affecting my relationship with both my mother and father,” said one 36-year-old participant.

“ALS steals so much from a relationship — the relationship you have with the person with ALS, but also with my mother because everything is about practical things, routines and frustrations, and it takes your focus off the person who is affected by ALS,” said another 33-year-old participant.

Some parents avoided talking about difficult subjects to protect their children from sadness. At the same time, the adult children often hid their own fears and emotions so they would not burden their parents. This lack of open discussion contributed to feelings of loneliness, frustration, and uncertainty for many participants.

“I don’t want to make her sadder than she already is. At the same time, it makes me even more sad and more desperate thinking about the future and her wishes for the future with the disease because she won’t talk about it. She never brings it up, and she immediately shuts down the conversation when we try to open it,” said one 25-year-old participant.

Siblings coped in different ways

Siblings often reacted differently to the situation. Some wanted to talk openly about the disease and their emotions, while others avoided these conversations. Differences in coping styles, caregiving responsibilities, and living distance from parents sometimes caused tension between siblings, although some families became closer through shared support and honest discussions.

Participants wanted more information about ALS, how it progresses, what changes to expect, and where to find support. Some preferred small amounts of information over time, while others wanted a full explanation from the beginning. They wanted guidance from healthcare professionals and from people who had personal experience living with ALS in the family.

“I actually think it’s great that we can address the things that are super uncomfortable and difficult to talk about — because it’s our reality — and if you keep putting it off, I think it only becomes harder. I really like that you can get help from professionals with specific and difficult conversations,” one 49-year-old participant said.

The emotional burden of ALS extended far beyond family life and could be severe enough to “cost me my job,” one 25-year-old participant said. Feelings were often mixed and included self-blame, sadness, frustration, gratitude, and closeness. Some felt guilty when taking time for themselves, while others felt relief when their parent died because the burden had ended. For some, the disease trajectory was described as “one long goodbye.”

Because adult children usually live outside the home, they may feel left out of medical decisions while still carrying heavy emotional responsibility. Participants said they needed clearer information, psychological help, and peer support groups where they could speak with others who understood the experience of having a parent with ALS.