Amyotrophic Lateral Sclerosis (ALS) Caregiver Resource Guide
See accompanying video, Amyotrophic Lateral Sclerosis (ALS) Caregivers: You’re Not Alone.
Key Resources
- The ALS Association
https://als.org/
- FCA Amyotrophic Lateral Sclerosis article
https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als/
Emotional Support
- ALS Association Support groups
https://als.org/local-support/support-groups
- FCA Grief and Loss
https://www.caregiver.org/resource/grief-and-loss/
- FCA Holding a Family Meeting
https://www.caregiver.org/resource/holding-family-meeting/
- FCA The Emotional Side of Caregiving
https://www.caregiver.org/resource/emotional-side-caregiving/
Community Resources
- AARP Family Caregiving How-To Video Series
https://aarp.org/ppi/initiatives/home-alone-alliance/family-caregiving-videos/ - ALS Association – ALS Certified Centers and Clinics
https://als.org/local-support/certified-centers-clinics
- ALS Association – Find Local Support for ALS
https://als.org/local-support
- Eldercare Locator
https://eldercare.acl.gov/Public/Index.aspx
A public service to connect individuals to community services for older adults and their families.
Helpline 1-800-677-1116
- FCA Caregiving at Home: A Guide to Community Resources
https://www.caregiver.org/resource/caregiving-home-guide-community-resources/
- FCA Family Caregiver Services by State
https://www.caregiver.org/connecting-caregivers/services-by-state/?state=national
Online tool to help family caregivers locate public, nonprofit, and private programs and services. - FCA Hiring In-Home Help
https://www.caregiver.org/resource/hiring-home-help/
- FCA Residential Care Options: Five Tip Sheets
https://www.caregiver.org/resource/residential-care-options-five-tip-sheets/ - I AM ALS
https://iamals.org/
Veterans
- ALS Association – Military Veterans with ALS
https://als.org/navigating-als/military-veterans
- VA Caregiver Support Program
https://caregiver.va.gov/
Legal and Financial Planning
- FCA Legal Planning for Incapacity
https://www.caregiver.org/resource/legal-planning-incapacity/
- National Academy for Elder Law Attorneys
https://naela.org/
Consumer resource directory for individuals to find elder and special needs law attorneys.
Research
- ALS Association Clinical Trials for People Living with ALS
https://als.org/research/clinical-trials-for-patients
Need More Info?
- Search our extensive library of resources under All Resources on our website.
- Sign up for CareNav™, a free online dashboard (+ customized resources) for family caregivers.
- Need additional help? Contact us info@caregiver.org or 800.445.8106.
Multiple Languages
Many FCA resources, including some above, are available in Spanish, Vietnamese, Chinese, Tagalog, and/or Korean.
Visit Our Website, Email, or Call Today:
www.caregiver.org | info@caregiver.org | 415.434.3388 | 800.445.8106
For more than 40 years, Family Caregiver Alliance has worked to improve the quality of life for family caregivers and their care recipients through services, education, advocacy and research. We support and assist caregivers of adults with chronic or disabling health conditions regardless of race, ancestry, national origin, creed, gender, gender identity, religion, sexual orientation, disability, income, or age.
This resource guide was underwritten with funding from Adira Foundation with additional support from other generous donors and produced by Family Caregiver Alliance.