ALS/MND affects the whole family, not only the person who is diagnosed. Family members, friends, and children often become part of daily care. Many do this while also working, studying, or raising children.
Caring for someone with ALS/MND can affect emotional, mental, and physical health. Without enough support, caregivers can reach burnout. This page brings together information and resources to support families and caregivers, including children and young people.
On this page
Finding support │ Children and young people │ Caring for yourself │ Relationships and intimacy │ Grief and bereavement │ Planning care
Support that can help
Caregivers, family members, and friends may need help at different points. Support can include:
- Social workers
- Counsellors, psychologists, and therapists
- Respite care workers, who provide short breaks from caregiving
- Grief and bereavement services
All caregivers have the right to regular training, resources, and education. See the Fundamental Rights for People with ALS/MND and Caregivers for the support they should be able to access.
Talking with children and young people
Children and young people often know more than adults expect. They want to know what is happening, whatever their age, and may look for answers online if no one talks with them. Because the disease progresses in different ways, it can be hard to know what to say. Grief, sadness, and guilt are common for children, young people, and adults alike.
The resources below can help parents, guardians, teachers, and other adults start these conversations and find support.
ALS & Children
Les Turner ALS Foundation · English
A guide to talking with children about ALS, how young people experience caregiving, and how to support them through each stage.
Families and ALS: A Guide for Talking with and Supporting Children and Youths
The ALS Association · English
A guide for parents and guardians about talking with children and young people about ALS/MND, finding support, and the ways young people may take part in caregiving.
Youth Education and Support
The ALS Association · English
Books, guides, and videos for children and young people affected by a family member’s ALS/MND, with resources for different ages:
- Real Kids Talk About ALS for ages 7 to 12
- The ALS Experience: It’s Different and Hard for ages 13 to 18
- School, Friends, Work, and ALS for ages 19 to 25
- Many Ways to Show You Care video series for ages 2 to 6
At School: A Guide to Supporting Students Who Have Been Affected by ALS
The ALS Association · English
A guide for teachers and school staff supporting students whose family member has ALS/MND. It covers caregiving responsibilities, disease progression, and end-of-life issues.
Children and Young People
MND Association · English
Information for children and young people up to age 25, and for parents and guardians. The site also lists grants and other support, including help with education.
Parents and Guardians
MND Association · English
Guidance to help parents and guardians explain an MND diagnosis to children and teenagers, start conversations, and find further support.
KARE Magazine
AMI-Quebec · English and French
A digital magazine for young caregivers in high school and CEGEP, and for the adults who support them. It includes personal stories, coping strategies, and resources.
LUKi and the Lights
Global Neuro YCare, with The ALS Association · No spoken language
A film about a robot’s journey with ALS. It uses sound and no spoken language, so families can watch and talk about ALS together, whatever language they speak. The film covers caregiving, death, and dying, and discussion guides are available for families.
Niños reales hablan sobre ELA
ACELA · Spanish
Guía ilustrada para niños y jóvenes que viven con un familiar con ELA.
Caring for yourself as a caregiver
Caregivers often put their own needs last. Taking care of yourself is part of sustaining care over time. These resources cover caregiver burnout, respite care, emotional support, and practical caregiving.
ALS & Caregiver Self-Care
Les Turner ALS Foundation · English
A guide to the causes and signs of caregiver burnout, how to prevent and manage it, and where to find professional and community support.
Coping With Burnout
The ALS Association · English
Information about caregiver burnout, including common causes and signs, and ways to reduce stress and build support.
Respite Care
The ALS Association · English
Guidance on arranging respite care, including identifying your needs as a caregiver, discussing them with the person you care for, and finding available services.
How to Care for People Living with ALS/MND
ALS Liga België · English, French, German, and Dutch
Information about the emotional and practical challenges of caregiving, coping with difficult feelings, and finding support.
A Guide for Family and Friends
ALS Liga België · English, French, German, and Dutch
A guide for family, friends, and caregivers covering psychological support, the role of the multidisciplinary care team, and practical care needs as ALS/MND progresses.
Carers’ Hub
MND Association · English
Practical and emotional support for anyone caring for a person with MND, including partners, family members, and friends who may not think of themselves as carers. Some services are available only in the United Kingdom.
Relationships and intimacy
ALS/MND and caregiving can change roles within a relationship, including emotional and physical intimacy. Open communication and practical adaptations can help couples maintain closeness as needs change.
ALS & Relationships, Sex, and Intimacy
Les Turner ALS Foundation · English
In this webinar recording, a nurse consultant from the Oxford MND Care and Research Centre discusses how couples can maintain physical closeness through adaptation and open communication.
Grief and bereavement
Grief can begin before a death and can affect people living with ALS/MND, caregivers, family members, and friends. Support can help people understand and cope with these feelings.
Bereavement Support
MND Association · English
Information about the many ways grief can affect people living with and affected by ALS/MND, including grief before a death, with links to further support services.
Planning care and sharing information
Planning ahead and sharing care preferences can help people living with ALS/MND, caregivers, and health professionals make decisions together as needs change.
My ALS Decision Tool
Les Turner ALS Foundation · English
An interactive tool that explains care options, benefits, and risks in plain language. It asks about a person’s needs and values, then suggests resources and next steps. Topics include breathing support, nutrition support, tracheostomy and invasive mechanical ventilation, clinical research, and genetic counselling and testing.
My ALS Communication Passport to Quality Care
Les Turner ALS Foundation · English
A printable passport that helps a person living with ALS record health information and care preferences and share them with caregivers and health professionals.