Journal of Gerontological Nursing

Public Policy 

Policy Recommendations for Family Caregiver Support

Susan C Reinhard, RN, PhD, FAAN; Mary Ann Rosswurm, EdD, RN, CS, FAAN; Karen M Robinson, DNS, RN, CS, FAAN

Abstract

Family caregivers, our nation's greatest resource for long-term care, are in jeopardy. Nurses have long realized the importance of family caregivers and the daily struggles they endure. More than 25 million family caregivers provide an estimated $194 billion in care (Arno, Levine, & Memmott, 1999). These family caregivers are the unpaid caregivers providing at least 80% of the long-term care for functionally dependent and cognitively impaired elderly relatives (Families USA Foundation, 1993). Without formal support training, one of five family caregivers is caring for a relative with Alzheimer's disease or a related dementia (Kelley, Buckwalter, & Maas, 1999; National Alliance for Caregiving, 1997). The need for long-term care and caregiving will continue to increase as the more vulnerable age 85 and older population increases. By 2040, there will be nearly 13 million Americans age 85 and older (National Center for Health Statistics, 1994).

Current policies ignore the needs of family caregivers. Family caregivers often must assume significant caregiving responsibilities with inadequate support and knowledge of caregiving. The changes in health care financing and delivery have intensified family caregiving responsibilities. More medical procedures performed on an outpatient basis, shorter hospital stays, and more complex equipment in the home have left family caregivers feeling overwhelmed. The majority of caregivers are women attempting to balance daily family caregiving with outside employment. They often must make some adjustments in their work schedules such as working shorter days, taking leaves of absence, or giving up outside employment altogether (Boaz & Müller, 1992). As a result, market productivity is a growing issue.

Family caregiving studies indicate that the burdens of the family caregiving experience have negative consequences on the physical and mental health of caregivers (Given & Given, 1991; Whitlatch, Feinberg, & Sebesta, 1997). In many cases, both the caregivers and care recipients are elderly individuals. With the current lack of formal support, their health and financial resources become depleted before they can access any type of state or federal assistance. The aging of America, coupled with a dependency ratio of fewer young people to support the growing older population, predicts that governments will not be able to assume families can continue their historic and heroic efforts to provide ongoing care to dependent family members.

Family caregivers have their limits; they need support. If the family caregiving system collapses under the weight of unsupported responsibilities, increased acute care and institutionalization of elderly individuals likely will be outcomes. Health care costs will spiral out of control, and the quality of life for elderly individuals will be compromised further. New policies are vitally needed to support and sustain family caregivers. It is ?? the best interest of federal and state governments to support family caregivers. The issue is how can governments better support these family caregivers. What policy options should we pursue?

POLICY GOALS

The goals of family caregivingsensitive policies should be to:

* Recognize the central role that family caregivers play in the health care system.

* Balance formal and informal (i.e., family) caregiving for ill and disabled family members.

* Involve family caregivers in health care plans and decisions.

* Provide relief to family caregivers so they can manage their ongoing responsibilities.

* Provide choices to families about family caregiving, education, counseling, and support.

* Facilitate the development and transfer of vital information to family caregivers.

* Encourage new partnerships among family caregivers, business and industry, government, and formal care providers.

POLICY RECOMMENDATIONS

1 . Fund and administer comprehensive, affordable, and accessible programs for family caregivers. The following programs should be offered on a sliding scale basis:

* Outreach and screening to locate isolated caregivers most…

Family caregivers, our nation's greatest resource for long-term care, are in jeopardy. Nurses have long realized the importance of family caregivers and the daily struggles they endure. More than 25 million family caregivers provide an estimated $194 billion in care (Arno, Levine, & Memmott, 1999). These family caregivers are the unpaid caregivers providing at least 80% of the long-term care for functionally dependent and cognitively impaired elderly relatives (Families USA Foundation, 1993). Without formal support training, one of five family caregivers is caring for a relative with Alzheimer's disease or a related dementia (Kelley, Buckwalter, & Maas, 1999; National Alliance for Caregiving, 1997). The need for long-term care and caregiving will continue to increase as the more vulnerable age 85 and older population increases. By 2040, there will be nearly 13 million Americans age 85 and older (National Center for Health Statistics, 1994).

Current policies ignore the needs of family caregivers. Family caregivers often must assume significant caregiving responsibilities with inadequate support and knowledge of caregiving. The changes in health care financing and delivery have intensified family caregiving responsibilities. More medical procedures performed on an outpatient basis, shorter hospital stays, and more complex equipment in the home have left family caregivers feeling overwhelmed. The majority of caregivers are women attempting to balance daily family caregiving with outside employment. They often must make some adjustments in their work schedules such as working shorter days, taking leaves of absence, or giving up outside employment altogether (Boaz & Müller, 1992). As a result, market productivity is a growing issue.

Family caregiving studies indicate that the burdens of the family caregiving experience have negative consequences on the physical and mental health of caregivers (Given & Given, 1991; Whitlatch, Feinberg, & Sebesta, 1997). In many cases, both the caregivers and care recipients are elderly individuals. With the current lack of formal support, their health and financial resources become depleted before they can access any type of state or federal assistance. The aging of America, coupled with a dependency ratio of fewer young people to support the growing older population, predicts that governments will not be able to assume families can continue their historic and heroic efforts to provide ongoing care to dependent family members.

Family caregivers have their limits; they need support. If the family caregiving system collapses under the weight of unsupported responsibilities, increased acute care and institutionalization of elderly individuals likely will be outcomes. Health care costs will spiral out of control, and the quality of life for elderly individuals will be compromised further. New policies are vitally needed to support and sustain family caregivers. It is ?? the best interest of federal and state governments to support family caregivers. The issue is how can governments better support these family caregivers. What policy options should we pursue?

POLICY GOALS

The goals of family caregivingsensitive policies should be to:

* Recognize the central role that family caregivers play in the health care system.

* Balance formal and informal (i.e., family) caregiving for ill and disabled family members.

* Involve family caregivers in health care plans and decisions.

* Provide relief to family caregivers so they can manage their ongoing responsibilities.

* Provide choices to families about family caregiving, education, counseling, and support.

* Facilitate the development and transfer of vital information to family caregivers.

* Encourage new partnerships among family caregivers, business and industry, government, and formal care providers.

POLICY RECOMMENDATIONS

1 . Fund and administer comprehensive, affordable, and accessible programs for family caregivers. The following programs should be offered on a sliding scale basis:

* Outreach and screening to locate isolated caregivers most in need.

* Education (i.e., information and referral) and training in how to provide care.

* Counseling and support services for family caregivers.

* Respite care provided by adequately trained individuals in homes and community settings, including weekends, evenings, and emergency situations.

2. Encourage collaboration among health care providers, family caregivers, governmental agencies, and business and industry in the following ways:

* Encourage private sector initiatives to support family caregivers.

* Give recognition to "best practices" of businesses that support caregivers through innovative policies and practices.

* Establish ongoing communications networks for formal and informal caregivers, and public and private stakeholders at national, state, and local levels.

3. Develop consumer-directed home care programs that are publicly supported and allow older adults to select and pay a family caregiver.

4. Encourage insurers to include benefits for family caregiver education and respite care options.

5. Support research on interventions to facilitate family caregiving.

Caregivers face myriad physical, emotional, social, and financial stresses. Federal and state governments need to take the lead in designing and implementing family caregiver programs that provide relief and support to overburdened family caregivers. The outcomes of demonstration programs need to be evaluated to ensure they are accessible and compatible with the needs of family caregivers.

REFERENCES

  • Arno, P.S., Levine, C, & Memmott, M.M. (1999). The economic value of informal caregiving. Health Affairs, 18(2), 182188.
  • Boaz, R.F., & Müller, CF. (1992). Paid work and unpaid help by caregivers of the disabled and frail elderly. Medical Care, 30(2), 149-158.
  • Families USA Foundation. (1993). The heavy burden of home care. Washington, DC: Author.
  • Given, B., & Given, C. (1991). Family caregiving for the elderly. In J.J. Fitzpatrick, R.L. Taunton, & A.K. Jacox (Eds.), Annual review of nursing research (Vol. 9, pp. 77-101). New York: Springer.
  • Kelley, L.S., Buckwalter, K.C., & Maas, M. L. (1999). Access to health care resources for family caregivers of elderly persons with dementia. Nursing Outlook, 47(1), 8-14.
  • National Alliance for Caregiving. (1997). Family caregiving in the U.S.: Findings from a national survey (Publication No. D16474). (Available from National Alliance for Caregiving, 4720 Montgomery Lane, Bethesda, MD 208143425)
  • National Center for Health Statistics. (1994). Health, United States, 1993. Hyattsville, MD: Public Health Service.
  • Whitlatch, C, Feinberg, L., & Sebesta, D. (1997). Depression and health in family caregivers. Journal of Aging and Health, 9, 222-243.

10.3928/0098-9134-20000101-11

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