For Caregivers

Caregiving

November is National Family Caregivers Month

The ALS Association again salutes those special people who serve as family caregivers during National Family Caregivers Month. The theme for this year’s campaign is “care comes home.” People living with ALS depend on the support of caregivers, many of whom are spouses, children, parents, friends and other loved ones, who put forth time, energy and effort to help meet patient needs.

The National Family Caregivers Association (NFCA) began honoring family caregivers in 1994 during Thanksgiving week, which eventually led to the month of November becoming National Family Caregivers Month. According to NFCA, the value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year, which is twice the amount spent on home care and nursing home services.

Caregivers of people with ALS face particular challenges because of the devastating nature of the disease. Caregiving is often willingly undertaken out of love and devotion, but over time it exacts an emotional toll and can adversely affect the caregiver’s physical and psychological health. This month and every month, The ALS Association wants to say “thank you” to the thousands of people who take care of family members and loved ones with ALS, and empower them with resources to take care of themselves. These resources include caregiving tips and hints, information on coping with burnout, respite care, and more.

National Family Caregivers Month sponsored by Permobil

Permobil is the longest standing National Partner for The ALS Association and is proud to sponsor National Family Caregivers Month. Permobil wants those suffering with this horrible disease to have access to the most innovative products and technology on the market that will allow them to function in everyday life. Permobil supports the ALS Association on multiple levels, including its Care Services program through the donation of seat elevators as well as serving as a national walk sponsor in walks around the country. 

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.

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.

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 02/2014