More than 80 percent of disabled and chronically ill Americans over the age of 65 receive some care from family members and friends.²

Family caregiving can be difficult and stressful. The burden of helping a seriously impaired relative or friend can become overwhelming. Research indicates³ that the health and well-being of caregivers can sometimes be threatened due to the stress of coping with a frail loved one. An important social goal is to assist caregivers who do take on the responsibility of helping a frail person perform the daily activities of life.

RWJF has supported a number of programs to provide respite and support to family caregivers.

Support for Caregivers

• Staff at the Roslynn Carter Institute of Georgia Southwestern State University developed a support program for caregivers. The program included a resource center and a resource guide for caregivers, caregiver-training programs, and support groups for caregivers. (See Program Results on ID# 030340.)
• Alcorn State University School of Nursing developed a training program for family members and other informal caregivers for providing in-home care to the chronically ill and physically disabled. (See Program Results on ID# 030747.)
• The University of Florida developed a consumer education and support program for people caring for dementia patients. The program is available online at AlzOnline or toll-free at (866) 266-2466. (See Program Results on ID# 041703.)

Public Education and Policy

• The Older Women's League provided media training to 175 chapter members to become spokespersons for the league's national Caring for Caregivers Campaign. Chapter members participated in the training, but did not get the caregiving message out to the media. (See Program Results on ID# 042766.)
• The Family Caregiver Alliance sponsored an October 2001 national conference for state policy-makers, disseminated conference proceedings and policy briefs and provided technical assistance to policy-makers, all directed at shaping public policy to strengthen support for family caregiving. (See Program Results on ID# 040402.) The policy briefs covered the following topics:
  • Federal and State Policy in Family Caregiving: Recent Victories but Uncertain Futures. This brief summarizes national and state policy developments, profiles a handful of state programs to assist family caregivers and examines trends for the future.
  • Paying Family Members to Provide Care: Policy Considerations for States. This brief profiles programs in four states to provide publicly funded payments to family caregivers. These programs emerge from the movement to expand consumer choice in long-term care, reviewed in Program Results Topic Summary: Consumer Choice in Long-Term Care.
  • Long-Term Care Workforce Shortages: Impact on Families. This brief analyzes the impact of the shortage of frontline long-term-care workers on family caregivers.
  • Olmstead v L.C.: Implications of the Olmstead Decision for Family Caregivers. In 1999, the U.S. Supreme Court ruled in Olmstead v. L.C. that keeping an individual with disabilities in an institution without justification constituted discrimination. This policy brief analyzes the Olmstead ruling from the perspective of family caregivers.
  • Enhancing State Initiatives for Working Caregivers. This brief examines employer perspectives on work-family issues and provides recommendations for state policies to support family caregivers.
  • Respite Care: State Policy Trends and Model Programs. This brief analyzes the role of state government in providing occasional relief to family caregivers and profiles model programs in New Jersey, Oregon and California.

Research

• Researchers at Rutgers University interviewed mental health patients and their families to identify the factors that would make informal, family care more or less burdensome for caregivers, and more or less supportive for persons with mental illness. (See Program Results on ID# 018059.)
• The United Hospital Fund of New York brought together a working group of researchers, clinicians, policy-makers and family caregiver advocates to produce an analysis leading to the development of more accurate measures of the work performed by family caregivers. (See Program Results on ID# 047515.)

Lessons Learned
These projects together revealed a number of lessons about family caregiving:

• Caregiving can be defined as a reciprocal exchange. The degree to which elderly or disabled family members give help and attention to their families strongly predicts how much help they receive in return from family members. (Finding from Rutgers University; see Program Results on ID# 018059.)
• Caregiving as a public policy issue does not carry a sense of urgency. A message as complex as addressing the issues surrounding caregiving by older females, along with the corollary need for an improved long-term-care system, requires much more than a modest media campaign to increase public awareness. (Conclusion from the Older Women's League Project Director; see Program Results on ID# 042766.)
• More refined measures, or entirely new approaches, are needed to describe the work of caregivers more accurately. (Finding from the United Hospital Fund of New York; see Program Results on ID# 047515.)
• Caregivers are reluctant to participate in training programs due to the required time away from their families. (Finding from Alcorn State University; see Program Results on ID# 030747.)
• The national shortage of frontline long-term-care workers has negative effects on family caregivers. State policy needs to address these labor shortages (Family Caregiver Alliance; see Policy Brief #3)
• Public payments to family caregivers could be an alternative to institutional care for a large percentage of frail elderly persons. (Family Caregiver Alliance; see Policy Brief #7)

² BC Spillman and KJ Black, "Staying the Course: Trends in Family Caregiving," Washington: AARP Public Policy Institute, 2005.
³ There is a body of literature on the health effects of family caregiving. The following is a selection of such research studies:

• Schultz R, Newsom JT, Mittlemark M, Burton LC, Hirsch CH and Jackson S. "Health Effects of Caregiving: The Caregiver Health Effects Study." Annals of Behavioral Medicine, 19: 110–116, 1997.
• Schulz R, Martire LM. "Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies." American Journal of Geriatric Psychiatry, 12(3): 240–249, 2004.
• Baronet AM. "Factors Associated With Caregiver Burden in Mental Illness: A Critical Review of the Research Literature." Clinical Psychology Review, 19(7): 819–841, 1999.