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For Caregivers


Help for ALS Caregivers

Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests.


Family Caregiving

 When a Loved One Has ALS

View our Caregiving brochure - When a Loved One Has ALS

Primarily, caregiving is provided by family members.  Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress.  The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.

Caregiving Statistics

  • Nearly 53 million people in the United States provide care to a chronically ill, disabled, or aging family member or friend during any given year.
  • Caregivers spend an average of 24 hours per week providing care for their loved one.
  • 61% of all caregivers in the United States are female, and the average age of a caregiver is 49.
  • 51% of caregivers feel their role has given them a sense of purpose or meaning.
  • One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent).

All data, unless otherwise cited, is from the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US Survey.

For additional information and resources, visit

ALS Family Caregiving Resources

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone (301) 942-6430
(800) 896-3650
Fax (301) 942-2302
Web site:

National Alliance for Caregiving
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814
Phone (301) 718-8444
Fax (301) 652-7711
Web site:

Family Caregiver Alliance
101 Montgomery Street, Suite 2150
San Francisco, CA 94104
Phone (415) 434-3388
(800) 445-8106 (in California)
Fax (415) 434-3508
Web site:

5900 Hollis Street, Suite S
Emeryville, CA 94608
510- 229-1100

The Center for Family Caregivers
P.O. Box 224
Park Ridge IL 60068


Empowering Caregivers

ElderCare Online

Today's Caregiver Magazine & Web Site
6365 Taft Street, Suite 3006
Hollywood, FL. 33024
Website: Email:

Organizational Resources:
The ALS Association
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301
Toll-free Information and Referral Service - (800) 782-4747
Phone (818) 880-9007
Fax (818) 880-9006
Web site:

The ALS Association Golden West Chapter

California Mailing Address - PO Box 7082, Woodland Hills, CA 91365.

Hawaii Mailing Address - PO Box 11284, Honolulu, HI 96828

(866)-750-2572 (ALSA)

All content and works posted on this website are owned and copyrighted by The ALS Association. ©2022

Lou Gehrig® used with permission of the Rip Van Winkle Foundation /