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Family and Friends Support a Loved One with ALS
Part of Your ALS Guide
Open source (opens in a new tab)Link checked August 2026
About this source
Your ALS Guide’s practical guide.
Where this source is used
Used in 37 places across 2 domains.
Questions
Support
Caregiver Wellbeing
- How can we talk about limits without guilt?
Used across the whole answer
- How can we talk about limits without guilt?
Supports this
“Carers are often reluctant to ask for help, and guilt is one of the reasons.”
Written for family and friends, and opens by saying carers are often reluctant to ask for help. It gives the reasons as guilt, or simply being too overwhelmed to work out what to ask for.
Caregivers are often reluctant to ask for help.
For Family and Friends - How can we talk about limits without guilt?
Supports this
“The people around a carer usually want to help, and can once they are told what would actually help.”
Advises family and friends to ask what is needed, or offer something specific, rather than making an open-ended offer to help sometime. Its reason is the same one this answer gives: a carer is often too overwhelmed to turn a vague offer into a request.
- How do I look after my own health while caring?
Adds context
“Getting help from other people is what keeps a carer from burning out.”
Written for the people around a carer rather than for the carer. It describes the pattern this advice is meant to interrupt: the main carer, often a partner, tries to do everything and then burns out.
It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out.
For Family and Friends
Peer Support
- How do I find peer support that suits me?
Used across the whole answer
- What if peer support feels difficult, or is not for me?
Used across the whole answer
- What is peer support, and how can connecting with others help?
Used across the whole answer
- What is peer support, and how can connecting with others help?
Supports this
“Peer support exists for caregivers and family members in their own right, not only for the person with ALS/MND.”
Says ALS organisations run support groups for caregivers, family and friends as well as for people with ALS, in person and online.
ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.
For Family and Friends - What kinds of peer and community support are there?
Used across the whole answer
- What kinds of peer and community support are there?
Supports this
“ALS/MND support groups run both in person and online, and different groups are aimed at the person with the condition, at caregivers, or at families.”
Says ALS organisations coordinate support groups in both formats and for each of those audiences.
ALS organizations across the country coordinate support groups (virtual and in-person) for people with ALS, caregivers, family, and friends.
For Family and Friends - What should I ask, and where can I start?
Used across the whole answer
Family Communication
- How do I talk with children and young people?
Used across the whole answer
- How do I talk with my family and friends about ALS/MND?
Used across the whole answer
- How do we cope with difficult emotions and disagreements?
Used across the whole answer
- How do we cope with difficult emotions and disagreements?
Adds context
“Strain can build in a family when the caring falls unevenly on one person.”
Your ALS Guide describes what an uneven load does to the main caregiver, who often tries to do everything and then burns out. That is burnout rather than resentment, so it supports the pattern but not the effect the answer names.
It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out.
For Family and Friends - What can help these conversations, and where can we get support?
Used across the whole answer
- Why does communication within the family matter, and why is it hard?
Used across the whole answer
Caregiver Coordination
- How do we share and organise caregiving roles?
Used across the whole answer
- How do we share and organise caregiving roles?
Supports this
“Trying to carry the whole caring role alone leads to exhaustion.”
Describes exactly this pattern, and uses it as the reason family and friends should step in: the main caregiver, often a spouse, tries to do everything and then burns out.
It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out.
For Family and Friends - What does coordinating care involve?
Supports this
“Care is rarely sustainable for one person alone, and organising it so the work is shared helps protect against caregiver burnout.”
Backs the first half. It describes the common pattern of the main caregiver, often a spouse, trying to do everything and then burning out, and uses that as the reason to share the work.
It is not uncommon for the primary caregiver (often a spouse) to try to do everything, and then burn out.
For Family and Friends
Resources
Communication
- Alt Communication
Further reading
Practical tips for family and friends on how to support and stay connected with a loved one as communication becomes harder.
Support
- Caregiver Coordination
Further reading
Ideas for sharing the caregiving load and letting family and friends pitch in so it does not all fall on one person.
- Caregiver Wellbeing
Further reading
Ideas for sharing the load and helping in useful ways, so caring does not fall on one person alone.
- Mental Health Support
Further reading
Practical ideas for how loved ones can offer emotional support, helpful when you are deciding who to lean on.
- Peer Support
Further reading
Practical ideas on how people around you can offer connection and support, and how to let others in when you need them.
- Family Communication
Further reading
A warm overview of how family and friends can talk about and support a loved one with ALS/MND, with ideas for opening up these conversations.
Caregiver Wellbeing
- How can we talk about limits without guilt?
Further reading
On sharing the load and how family and friends can help in useful ways
Peer Support
- How do I find peer support that suits me?
Further reading
Finding peer support and community
- What if peer support feels difficult, or is not for me?
Further reading
Finding the peer support that works for you
- What is peer support, and how can connecting with others help?
Further reading
Connecting with others affected by ALS/MND
- What kinds of peer and community support are there?
Further reading
Forms of community and peer support
- What should I ask, and where can I start?
Further reading
Getting started with peer and community support
Family Communication
- How do I talk with children and young people?
Further reading
Supporting children and young people
- How do I talk with my family and friends about ALS/MND?
Further reading
Talking with family and friends about ALS/MND
- What can help these conversations, and where can we get support?
Further reading
Support for family communication
- Why does communication within the family matter, and why is it hard?
Further reading
Communication and relationships when a loved one has ALS/MND
Caregiver Coordination
- How do we share and organise caregiving roles?
Further reading
Sharing caregiving and accepting help
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