ALS & FTD Caregiver Resources
A place to start, organize care and find support.
What does it mean to be a caregiver?
A caregiver helps someone living with amyotrophic lateral sclerosis (ALS) or frontotemporal dementia (FTD) in daily life. They may be a family member, friend or paid aide; several people can share care. They may help with appointments, routines, paperwork, companionship and daily needs while respecting the person's choices and dignity.
You do not need to be a medical professional to offer support. For tasks such as using respiratory equipment, helping with transfers or administering treatments, ask the clinical team for training. Each family's needs are different.
Your caregiving checklist
A starting point for conversations with your family and clinical team.
Plan appointments and who will attend
Keep dates, locations and transportation together.
Open care toolKeep a current medication and dose list
Follow the prescribed plan; ask the clinician about changes.
Open care toolWrite down concerns before the visit
Bring observations and questions in your own words.
Open care toolReview recording instructions with the care team
If requested, save patient recordings on your own device, not in NeuroVia.
Open care toolTrack equipment and supplies
Ask trained professionals to demonstrate equipment and safe assistance.
Open care toolShare responsibilities and plan time to rest
Identify who can help and a backup caregiver.
Open care tool
ALS caregiver support
Ask the ALS clinical team to help you plan care and learn the skills you need. Bring questions about communication, mobility, equipment and help at home to your visit.
Caregiver education, support groups and resources; ask about local services.
Explore technology and equipment resources for people living with ALS.
FTD caregiver support
Share concerns about communication, routines and safety with the FTD clinical team. Ask for help finding caregivers and support groups familiar with the condition.
Find guidance and support resources for families affected by FTD.
Education and support for family caregivers.
Respite, help at home and Veterans support
Respite care lets someone else help while you take a break. Explore the programs below and ask about eligibility, costs and availability. For Military Veterans, the VA offers caregiver support programs; benefits depend on eligibility.
Need Spanish-language help? Ask each organization about translated materials or an interpreter; availability varies.
Caregiver support directory
For information only: a listing is not an endorsement. NeuroVia is not affiliated with these organizations; confirm details with each one.
Eldercare Locator
Find your local Area Agency on Aging for in-home care and respite. Call 1-800-677-1116.
Visit RespiteARCH National Respite Locator
Search for respite care so family caregivers can rest.
Visit Paid family careMedicaid Self-Directed Care
In many states Medicaid can pay a family member to provide care at home.
Visit VeteransVA Caregiver Support Program
Caregiver support and training for Veterans' families; ask about eligibility for respite and financial assistance. 1-855-260-3274.
Visit VeteransVA Home Health Aide & Respite
VA-paid home health aides and respite for eligible Veterans.
Visit ALSALS Association Care Services
Caregiver education, support groups and resources; contact the Association for local services.
Visit FTDAFTD HelpLine
FTD information and connections to resources and support. 1-866-507-7222.
Visit AgenciesMedicare Care Compare — Home Health
Compare Medicare-certified home health and hospice agencies near you.
Visit Family helpLotsa Helping Hands
Free calendar to organize friends and family who want to help.
Visit