Caregiver Information

In this section you will find a wealth of information for caregivers.  Take the time to explore all of the links to the left and you will find great tips to better care for a person with ALS and also information to help caregivers care for themselves.

HIGHLIGHTS

• Do you need help managing care? Take advantage of our Care Connection!
• November is National Family Caregivers Month!

Facts About Family Caregivers

The ALS Association is proud of its tradition of leadership in providing comprehensive programs and services for ALS caregivers. Along with those programs and with the assistance of the National Family Caregivers Association, our continuing partner in recognition of November as National Family Caregivers’ Month, we are pleased to present to you the following Family Caregiving Statistics.

Family Caregiving Statistics
Compiled by the National Family Caregivers Association

• More than one quarter (26.6 percent) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current census data, that translates into more than 50 million people. Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000.
• Caregiving is no longer predominantly a women's issue. Men now make up 44 percent of the caregiving population. Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000.
• The value of the services family caregivers provide for "free" is estimated to be $257 billion a year. Source: Peter S. Arno, "Economic Value of Informal Caregiving," presented at the American Association of Geriatric Psychiatry, February 24, 2002.
• Virtually one-half of the US population has a chronic condition. Of these, 41 million were limited in their daily activities. Twelve million are unable to go to school, to work, or to live independently. Source: Chronic Care in America (Institute for Health & Aging, Univ. of CA/SF for the Robert Wood Johnson Foundation) 1996.
• People over 85 years of age are the fastest growing segment of the population. Half of them need some help with personal care. Source: US Bureau of the Census Statistical Brief, Sixty Five Plus in the United States, May 1995.
• Elderly caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63 percent higher mortality rate than their non-caregiving peers. Source: Journal of the American Medical Association, December 15, 1999, Vol. 282, No. 23.
• The pool of family caregivers is dwindling. In 1990, there were 11 potential caregivers for each person needing care. In 2050, that ratio will be 4:1. Source: Chronic Care in America — as above.
• Sixty-one percent (61 percent) of "intense" family caregivers (those providing at least 21 hours of care a week) have suffered from depression. Some studies have shown that caregiver stress inhibits healing. Source: National Family Caregivers Association/Fortis Long Term Care (Caregiving Across the Life Cycle) 1998; Lancet 1995; 346 (Slowing of Wound Healing by Psychological Stress - Kiecolt-Glaser, JK et al).
• Family caregivers who provide significant time and effort in caring for a loved one, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three fourths of these caregivers are "going it alone." Source: Caregiving Across the Life Cycle — as above.
• Approximately 80 percent 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.
• A recent study calculated that American businesses loses between $11 billion and $29 billion each year due to employees' need to care for loved ones 50 years of age and older. Source: National Alliance for Caregiving/Met Life (Met Life Study of Employer Costs for Working Caregivers).
• Fifty nine percent of the adult population either is or expects to be a family caregiver. Source: National Family Caregivers Association (Random Sample Survey of 1,000 Adults Sponsored by Aleve).

The National Alliance for Caregiving and AARP have released "Caregiving in the US," an update to the 1997 National Caregiver Survey. The research report and supporting documents are available on the Alliance web site at www.caregiving.org.