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 ALS patient often causes the caregiver to overlook her/his own needs eating properly, getting enough rest, taking time to pursue one’s own interests.
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.
Family Caregiving Statistics
Compiled by the National Family Caregivers Association
- More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.
Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009
- Approximately 80% of home care services are provided by family caregivers. Source: US General Accounting Office (GAO/HEHS 95-26, "Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages") 1994.
- Approximately 66% of family caregivers are women. Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP. November 2009
- 78% of adults living in the community and in need of long-term care depend on family and friends as their only source of help. Thompson, L. Long-term care: support for family caregivers. 2004
- The value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving; National Alliance for Caregiving and Evercare. March 2009
The National Family Caregiver's Association has also compiled state-by-state statistics on the economic impact of family caregiving. For more information, please visit www.nfcacares.org.
The National Alliance for Caregiving and AARP have released "Caregiving in the US." The research report and supporting documents are available on the Alliance web site at www.caregiving.org.
Last update 11/2014
About Care Connections
It’s easy for people with ALS and their families to become overwhelmed by the wide range of needs they have, from everyday errands to making meals, maintaining their home, getting children to and from school, and so much more. It’s hard to know when and how to ask friends and neighbors for help, and how to organize their availability. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how you can make a difference.
The Care Connection program is simple: it’s a network of volunteers from the community – friends, neighbors, members of community organizations like your church, or other service groups – that provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities.
The program provides a plan for organizing help, training and information about what approaches tend to be most effective. The Care Connection uses a website –lotsahelpinghands.com – that allows volunteers to sign in and see the community calendar where tasks have been posted by a volunteer coordinator. It’s easy to see what people have already volunteered to do and what still needs volunteers. The website shows activities based on type of need (meals, rides, babysitting, grocery shopping) and calendar days, and it’s simple to use.