A diagnosis of ALS/MND affects emotional health as well as physical health. People living with ALS/MND and their families can face strong and changing emotions at every stage of the disease. These reactions are normal, and support is available.
This page explains common emotional responses, when to ask for help, the treatments and support available, and changes to thinking and behaviour that some people experience.
On this page
Emotional responses │ When to ask for help │ Treatment and support │ Emotional lability │ Thinking and behaviour │ Family and caregivers │ Resources
Common emotional responses
People living with ALS/MND and those close to them often experience:
- Shock, disbelief, or numbness after diagnosis
- Grief for losses, both now and in the future
- Anxiety and worry about what lies ahead
- Low mood, sadness, or anger
- Frustration as abilities change
- Strain on relationships, roles, and identity
These feelings can come and go, and they often return when the disease changes or a new decision needs to be made.
When to ask for help
Talk to your doctor or care team if you or someone close to you has:
- Low mood or loss of interest in things you usually enjoy, lasting two weeks or more
- Worry or anxiety that is hard to control or interferes with daily life
- Feelings of hopelessness or being a burden
- Difficulty coping with daily life or relationships
Depression and anxiety are treatable, even when they are linked to a serious illness. Asking for help early makes a difference.
If you are thinking about harming yourself, or feel unable to keep yourself safe, contact your local emergency services or a crisis line in your country immediately.
Treatment and support
Different types of support suit different people and needs:
- Talking therapies, such as counselling and psychotherapy, help people work through difficult emotions, adjust to change, and develop ways of coping.
- Medication can treat depression and anxiety. A doctor can advise whether medication is suitable, taking other treatments and symptoms into account.
- Peer support from others living with ALS/MND, through support groups or online communities, can reduce isolation.
- Practical support from a social worker with finances, care arrangements, and services can ease stress for the whole family.
Emotional lability
Some people with ALS/MND experience sudden laughing or crying that is out of proportion to how they feel, or that they cannot control. This is called emotional lability (also known as pseudobulbar affect).
It is caused by the effect of ALS/MND on the brain, not by a person’s mood or character. It can be embarrassing or distressing, but it can be treated. Tell the care team if it happens.
Changes in thinking and behaviour
Some people with ALS/MND experience changes in thinking, language, or behaviour. These changes are often mild, such as difficulty planning, concentrating, or finding words. A smaller number of people develop frontotemporal dementia (FTD): a type of dementia that affects the front and sides of the brain and changes personality, behaviour, and language.
Changes in thinking and behaviour can be difficult for families to recognize and understand. A neuropsychologist or the care team can assess these changes and suggest ways to manage them.
Support for family and caregivers
Family members and caregivers need emotional support too. Many of the professionals and services on this page are also available to them. See Support for Family and Caregivers.
Who can help
- Family doctor (general practitioner): a first point of contact for mood and anxiety, and for referrals
- Psychologist or counsellor: provides talking therapies
- Psychiatrist: diagnoses and treats mental health conditions, including with medication
- Neuropsychologist: assesses changes in thinking and behaviour
- Social worker: offers emotional and practical support and connects families with services
- Spiritual or faith counsellor: offers support with questions of meaning, faith, and values
- Occupational therapist: helps people stay engaged in activities that matter to them
Services vary between countries. Your ALS/MND clinic or local ALS/MND association can help you find support near you.
Videos about mental health and emotional support
Watch videos about mental health, emotional wellbeing, and support for people living with ALS/MND and their families.
Resources from our members
Explore additional resources about emotional wellbeing, mental health support, and changes in thinking and behaviour developed by Alliance member associations.
Emotional and psychological support
Emotional and Psychological Support
MND Association · English
A guide to recognizing difficult emotions, finding support, and understanding the therapies available for people living with MND and their caregivers.
Coping with ALS
The ALS Association · English
Information about signs that a person may need mental health support, and the treatment and support options available.
What Does the Psychologist Do?
ALS Centrum Nederland · Dutch
An overview of the psychologist’s role on the care team and the support a psychologist can offer people living with ALS/MND, their caregivers, and families.
What Can the Social Worker Do for You?
ALS Centrum Nederland · Dutch and English
Information about the social worker’s role and the emotional and practical support they offer people living with ALS/MND and their families.
Psychological Treatment Program
ALS Society of British Columbia · English · British Columbia, Canada
Therapy and counselling from psychologists and registered clinical counsellors trained in ALS. The service is free for people without extended health benefits and is available in British Columbia only.
Changes in thinking and behaviour
Changes to Thinking and Behaviour with MND
MND Association · English
Information about changes to thinking and behaviour that some people with MND experience, with guidance for people living with MND, their caregivers, and families.
Changes in Thinking and Emotional Lability
The ALS Association · English
Information about changes in thinking, dementia, depression, and emotional lability, and how people living with ALS/MND and caregivers can manage them.
ALS, Cognitive Impairment and Dementia
The ALS Association · English · For health professionals
A fact sheet about cognitive change and frontotemporal dementia in ALS/MND, how to manage these changes, and how to discuss them with people living with ALS/MND.