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Dementia Caregiving Facts in the United States


Informal Caregivers in the United States

Caregivers in the United States provide long-term care and support for loved ones who have been incapacitated by accidents, illness, or
terminal disease. The contributions made by caregivers are huge:

  • More than 44 million individuals in the US serve as informal and unpaid caregivers (AARP, 2004), nearly 15 million of whom are caring for someone with Alzheimer’s (Marcus 2011)The majority of these individuals – 80% of them – are caring for someone who is related to them (NAC & AARP, 2004).
  • The efforts of informal and family caregivers amount to $375 billion in 2007 (AARP 2008).

Dementia Caregivers in the United States

  • An estimated 5.3 million Americans have Alzheimer’s disease (Alzheimer’s Association, 2009). The majority (70%) of these individuals live at home where they receive 75% of their care from informal caregivers (FCA, 2009).
  • Caregivers for persons with dementia often bear a heavier burden as compared to other caregivers. In fact, 25% of these caregivers provide at least 40 hours a week of care for their loved one (AA & NAC, 2004).
  • Furthermore, nearly 33% of dementia caregivers are also caring for children under the age of 18 in their household (AA & NAC, 2004).

Given the size of the task that they face, it may not be a surprise that these caregivers are more likely than others to pursue supportive community services and care options than do other caregivers. However, still only 56% of dementia caregivers use these supportive options (AA & NAC, 2004).

Health Care Reform and Caregivers

Health Care Reform will bring lots of changes to the services provided for home and community-based care. Among these are:

  • An option in Medicaid to provide community-based attendant supports to those with disabilities.
  • Provisions for financial support for community and home-based services so that people may move out of institutional care.
  • Protections against spousal impoverishment for those receiving Medicaid home and community-based services .

View References

Alzheimer’s Association and National Alliance for Caregiving. Families care: Alzheimer’s caregiving in the United States 2004. Available at: http://www.alz.org/national/documents/report_familiescare.pdf. Retrieved March 26, 2009.

Alzheimer’s Association. 2009 Alzheimer’s disease facts and figures. Available at: http://www.alz.org/national/documents/report_alzfactsfigures2009.pdf. Retrieved March 27, 2009.

Family Caregiver Alliance. 2009 National Policy Statement. Available at: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2279. Retrieved March 30, 2009.

National Alliance for Caregiving and AARP. Caregiving in the U.S. 2004. Available at: http://www.caregiving.org/data/04finalreport.pdf. Retrieved March 26, 2009.

AARP Public Policy Institute. Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Insight on the Issues. 2008. Available at http://www.caregiving.org/data/04finalreport.pdf. Retrieved July 19, 2010.

Family Caregiver Alliance. (2010). Health Care Reform and Family Caregivers. Available at http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2397. Retrieved July 19, 2010.

Marcus Mary B. Alzheimer’s Carries Heavy Toll on 15M Unpaid Caregivers. 2011. Available at: http://www.usatoday.com/yourlife/health/medical/alzheimers/2011-03-15-alznumbers15_ST_N.htm. Retrieved June 13, 2011.