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ALS Caregivers Guide
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 78 places across 6 domains.
People who may help
Everyday support
- Family carer
What this person does, and where they sit in a team
Questions
Planning
Finance & Insurance
- How can ALS/MND affect finances?
Background the team read
- How do I find out what applies to me and get advice?
Background the team read
- What kinds of financial and insurance support might exist?
Background the team read
- What should I ask about finances and insurance?
Background the team read
Disability Benefits
- How do I find and apply for what I am entitled to?
Used across the whole answer
- What are disability benefits, and could they help me?
Used across the whole answer
- What kinds of disability support are commonly available?
Used across the whole answer
- What makes applying easier, and what if I am refused?
Used across the whole answer
- What should I ask about disability benefits?
Used across the whole answer
Long-Term Care
- How do I plan ahead for future care needs?
Used across the whole answer
Support
Caregiver Coordination
- How do caregivers look after themselves?
Used across the whole answer
- How do we organise practical help and stay coordinated?
Used across the whole answer
- How do we share and organise caregiving roles?
Used across the whole answer
- What does coordinating care involve?
Used across the whole answer
- 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.”
Puts it at the same strength as the answer now does. It says finding support and taking breaks can help you avoid caregiver burnout, which is a protective effect rather than a guarantee.
Finding support and taking breaks can help you avoid caregiver burnout and ultimately take better care of your loved one.
Take Care of Yourself - What should we ask, and where can caregivers get support?
Used across the whole answer
- What should we ask, and where can caregivers get support?
Supports this
“ALS/MND associations are a main route to caregiver support, practical advice and contact with other families.”
Sets out what these organisations do for caregivers: answer questions, connect families to resources, lend equipment and run support groups. It says such organisations exist in many countries, not only in the United States.
These organizations can usually answer your questions, connect you to resources, loan equipment, facilitate support groups, and more.
Connect with Local Support Services
Caregiver Wellbeing
- How do I look after my own health while caring?
Used across the whole answer
- How do I look after my own health while caring?
Supports this
“Getting help from other people is what keeps a carer from burning out.”
Puts finding support and taking breaks together as what keeps a carer from burning out.
Finding support and taking breaks can help you avoid caregiver burnout and ultimately take better care of your loved one.
Take Care of Yourself - What are the signs of carer stress or burnout?
Used across the whole answer
- What if the main carer becomes unwell or unavailable?
Used across the whole answer
- What support is available for carers?
Used across the whole answer
- What support is available for carers?
Supports this
“Local MND and ALS organisations run carer groups and can connect carers to local services.”
Says local ALS organisations run carer-only support groups, usually free, and separately that these organisations can answer questions, connect people to resources, lend equipment and run groups. That is the same list this answer points carers towards.
Many local ALS organizations facilitate caregiver-only support groups at no cost that focus on your needs and challenges.
Join a Caregiver Support Group - When should we consider respite, and how do we arrange it?
Supports this
“Carers are advised to find and schedule respite in advance rather than wait until they are worn out.”
Says ALS professionals recommend that family carers actively find and schedule respite, and that even a strong and independent person will need breaks. It treats respite as something to organise, not a last resort.
ALS professionals recommend that family caregivers find and schedule respite care, which is any type of short-term caregiving assistance that provides rest and relief for you.
Schedule Respite Care - Why does caring for someone with MND affect the carer's own wellbeing?
Used across the whole answer
- Why does caring for someone with MND affect the carer's own wellbeing?
Supports this
“How well a carer is looked after affects the care they are able to give.”
Makes the same link the other way round: finding support and taking breaks is what keeps a carer from burning out, and that is what lets them keep caring well.
Finding support and taking breaks can help you avoid caregiver burnout and ultimately take better care of your loved one.
Take Care of Yourself
Family Communication
- How do we cope with difficult emotions and disagreements?
Supports this
“A counsellor, family therapist, social worker or your ALS/MND team can help a family through difficult conversations, conflict or strong emotions.”
Your ALS Guide advises exactly this route when a relationship gets stuck: the social worker at the ALS clinic or the local ALS organisation, or a couples counsellor.
If you continue to struggle and feel stuck in negative patterns, you may want to talk with the social worker at your ALS clinic or local ALS organization, or meet with a couples counselor to improve your dynamics.
Prioritize Your Relationship
Medical Care
Get Set Up
- How do I know when to ask for help?
Used across the whole answer
- How do I know when to ask for help?
Supports this
“Carers should look for support before they are exhausted, because finding it is what prevents burnout.”
Says finding support and taking breaks is how a caregiver avoids burnout, and that doing so lets them care better rather than being selfish.
Finding support and taking breaks can help you avoid caregiver burnout and ultimately take better care of your loved one.
Take Care of Yourself - How do I organise my medical information?
Used across the whole answer
- How do I start building a support system?
Used across the whole answer
- What emergency information should I have ready?
Used across the whole answer
- What should I focus on first after an ALS/MND diagnosis?
Used across the whole answer
- When should I contact my local ALS/MND association?
Used across the whole answer
Clinic Coordination
- How do I make the most of clinic visits and keep care coordinated?
Used across the whole answer
End-of-Life Care
- What should family members know, and what support is there for grief?
Used across the whole answer
Resources
Lifestyle
- Daily Living Tools
Further reading
A practical caregiver handbook covering everyday tasks like eating, dressing, and hygiene, and the simple aids that make them easier.
- Energy Management
Further reading
Practical guidance for caregivers on supporting daily routines and sharing the load so the person with ALS can spend energy on what matters most.
Planning
- Advance Care Planning
Further reading
A practical guide for families and caregivers that covers planning ahead and supporting a loved one through care decisions.
- Disability Benefits
Further reading
A broad caregiver guide that helps you get organized and navigate the support, paperwork, and services that come with an ALS diagnosis.
- Finance & Insurance
Further reading
A broad caregiver guide that walks through the practical and financial side of living with ALS, including planning around changing costs.
- Housing Planning
Further reading
A practical all-in-one guide that walks families through living arrangements, daily care, and the home setup decisions that come with ALS.
- Long-Term Care
Further reading
A broad guide for families that covers arranging care, getting support, and looking after yourself as a caregiver over the long haul.
Finance & Insurance
- How can ALS/MND affect finances?
Further reading
General guide for families caring for someone with ALS (US-focused)
- How do I find out what applies to me and get advice?
Further reading
General guide for families caring for someone with ALS (US-focused)
- What should I ask about finances and insurance?
Further reading
General guide for families caring for someone with ALS (US-focused)
Disability Benefits
- How do I find and apply for what I am entitled to?
Further reading
Getting help to find and apply for benefits
- What are disability benefits, and could they help me?
Further reading
Navigating disability support as a family
- What makes applying easier, and what if I am refused?
Further reading
Managing applications and appeals
- What should I ask about disability benefits?
Further reading
Questions to ask about disability benefits
Long-Term Care
- How do I plan ahead for future care needs?
Further reading
Planning ahead for care as a family
Communication
- Alt Communication
Further reading
A broad caregiver guide that covers helping with everyday communication and working out a system that suits your household.
Support
- Caregiver Coordination
Further reading
A practical caregiver handbook covering what daily care involves and how to organise the help you need.
- Caregiver Wellbeing
Further reading
A practical guide for carers, including looking after your own health, avoiding burnout, accepting help, and taking breaks.
- Mental Health Support
Further reading
A caregiver-focused guide that includes looking after your own emotional health while supporting someone with ALS.
- Peer Support
Further reading
A broad caregiver guide that covers finding support and connecting with others who share the caregiving experience.
- Family Communication
Further reading
A broad caregiver guide covering the practical and emotional sides of living with ALS/MND as a family, including how to share the load and keep talking.
Caregiver Coordination
- How do caregivers look after themselves?
Further reading
Caregiver wellbeing, burnout and respite
- How do we organise practical help and stay coordinated?
Further reading
Organising helpers, schedules and information
- What does coordinating care involve?
Further reading
Understanding the caregiving role in ALS/MND
- What should we ask, and where can caregivers get support?
Further reading
Questions to ask and where caregivers find support
Caregiver Wellbeing
- How do I look after my own health while caring?
Further reading
Practical carer self-care, including health, rest and accepting help
- What if the main carer becomes unwell or unavailable?
Further reading
On sharing care and not relying on one person alone
- What support is available for carers?
Further reading
An overview of the support carers can draw on
- Why does caring for someone with MND affect the carer's own wellbeing?
Further reading
A practical guide for carers, including looking after yourself and avoiding burnout
Family Communication
- How do we cope with difficult emotions and disagreements?
Further reading
Coping with emotions and tensions in the family
Mobility
- Home Modifications
Further reading
A practical caregiver guide that covers setting up the home and daily living so it stays safe and manageable.
- Vehicle Adaptations
Further reading
A practical guide for families that includes help with transport and daily logistics of getting around.
Medical Care
- Clinic Coordination
Further reading
A practical guide for caregivers on organising appointments and keeping care coordinated across the team.
- Palliative Care
Further reading
A caregiver-focused guide that explains the kinds of support available to families, helping you understand the comfort and quality-of-life care a palliative team can offer.
Get Set Up
- How do I know when to ask for help?
Further reading
Knowing when and how to ask for help
- How do I organise my medical information?
Further reading
Keeping medical information organised
- How do I start building a support system?
Further reading
Building a support system early
- What emergency information should I have ready?
Further reading
Preparing emergency information
- What should I focus on first after an ALS/MND diagnosis?
Further reading
Practical first steps after a diagnosis
- When should I contact my local ALS/MND association?
Further reading
How ALS/MND associations support people and families
End-of-Life Care
- What should family members know, and what support is there for grief?
Further reading
Support for family and carers, including through the hardest times
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