The mission of The ALS Association (ALSA) involves informing patients, families and caregivers about living with ALS and providing support for people affected by the disease. Inherent in this statement is both an educational and a support focus on ALS family caregivers. While deservedly much attention is directed to the education and support of patients with ALS, ALSA also recognizes the tremendous responsibilities the family caregivers assume. In support of the education, resource and support needs of ALS patients and family caregivers, The ALS Association offers the following programs and services through its network of chapters, support groups, certified clinical centers and the National Office. Printed educational materials about:- ALS and its effects on motor function
- What to expect as the disease progresses
- Living with ALS - coping and symptom management including mobility, speech, swallowing, and breathing problems
- How to care for a person with ALS at home including physical care, nutrition and emotional issues
- Medications for ALS and symptom management
- Research progress
- A suggested reading list that includes a number of books for and about ALS patients and their family caregivers covering a wide variety of specific topics from ALSA's FYI Information Index
 Visit ALSA's National Office Library
Support groups: - Many support groups are designed to meet the special needs of ALS family caregivers.
- Other support groups devote a portion of the meeting time to meet with family caregivers separate from the persons with ALS.
- Support group programs include speakers and resources specifically designed for family caregivers.
- Support groups provide networking opportunities for family caregivers to meet one another and offer each other mutual support and practical problem solving strategies.
Information and Referral Service: - ALSA's National Office provides a telephone information and referral service Monday through Friday from 7:30 a.m. to 4 p.m. pacific time. The toll-free number is (800) 782-4747.
- Family caregivers can call for information on a wide variety of issues including where to get products and assistance, insurance questions, physician resources or to talk with someone about their caregiving responsibilities and how to cope.
- ALSA chapters offer telephone information and referral services for family caregivers in their service areas.
Equipment Loan Programs: - Most ALSA chapters loan a range of equipment to ALS families. Equipment such as a lift device, wheelchair or communication device can make a significant difference to the family caregiver as well as the ALS patient.
Respite Programs: - Many ALSA chapters offer respite programs to provide family caregivers time away from the home and their responsibilities. Caregivers can use the time - from a few hours to a full day or more - to take care of personal matters, catch up with family and friends and have a chance for rest and relaxation.
Affiliations:The ALS Association is affiliated and works closely with the: - National Family Caregivers Association,
- National Alliance for Caregiving, and the
- Family Caregiver Alliance.
ALSA is a member of the advisory board of the ALS Clinical Assessment, Research and Education (ALS C.A.R.E.) program that is a longitudinal study including ALS caregivers. |
