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Building a High-Quality Long-term Care Paraprofessional Workforce

Informal Caregivers

Presenter:

Lynn Friss Feinberg, M.S.W., Director, Research and Information Programs, Family Caregiver Alliance, San Francisco, CA.


Family members and other "informal caregivers" (e.g., friends and neighbors) provide the majority of care to the elderly and chronically ill, often at great personal expense. In 1998, the amount of long-term care (LTC) provided by informal caregivers was estimated to have a market value of $196 billion. Compared with $32 billion in home health care and $83 billion for nursing home care, informal care accounts for a majority of LTC provided in the United States.

Some of the relevant data regarding informal caregivers include:

  • A large number of Americans provide informal care to a friend or relative. About one in three people provides some informal care, with care being provided in about 22 million households.
  • By 2007, this number is expected to grow to 39 million households.
  • Informal caregiving can last from less than a year to a lifetime, but the large majority of informal caregivers provide care for a period of 1 to 5 years.
  • About 95 percent of the elderly who receive LTC receive some informal care.
  • Sixty-five percent receive only informal care and 30 percent receive both formal and informal care.
  • A large majority of informal caregivers are middle-aged or elderly women.
  • Seventy-three percent are the wives and daughters of elderly husbands or parents.
  • Middle-income families tend to be hit the hardest, because they cannot afford nursing home or home health care but have incomes too high to qualify for Medicaid or other public health care programs.

Shortages of formal LTC workers (nurses, nurse aides, and home care workers) have been well publicized. However, in the coming years, the United States will also face a shortage of informal caregivers. This shortage will be driven by an increase in the ratio of elderly to potential caregivers as well as a reduction in the time friends and family have to provide care. A number of societal factors will contribute to the informal caregiver shortage, including:

  • Smaller families (fewer siblings and adult children to provide care).
  • Higher numbers of women in the workforce.
  • Delayed childbirth (leading to an increased number of "sandwich generation" caregivers with both minor children and elderly parents).

In addition to economic and demographic statistics on informal caregivers, research has shown that recipients of LTC prefer to receive care in their own homes and communities from people they know and trust. Given the monetary and social value of care delivered by informal caregivers, many policymakers are recognizing a need to provide financial and other support for those deliver informal care.

Caregiving is often a heavy personal, mental, and financial burden on friends and family. These pressures are manifested, especially among elderly spouses of care recipients, in increased rates of:

  • Depression.
  • Physical strain.
  • Illness.
  • Psychotropic drug use.
  • Morbidity.

A recent survey in California found that caregivers require a variety of supports, including:

  • Emotional support.
  • Respite from caregiving.
  • Legal help.
  • Financial assistance.
  • Assistance finding formal LTC providers.

In response to the needs of informal caregivers, a number of States have established caregiver support programs. These programs vary widely in:

  • Populations targeted.
  • Eligibility criteria.
  • Scope of services.
  • Funding levels.

Despite differences in program administration, many State caregiver support programs provide a similar set of caregiver services, including:

  • Respite care.
  • Care planning and management.
  • Support groups and counseling.
  • Education and training.
  • Other financial or technical assistance.

Providing caregiver support is a growing LTC policy issue at the State level, and a number of States have established strong caregiver support programs, including:

  • California.
  • New Jersey.
  • New York.
  • Oregon.
  • Pennsylvania.

California's caregiver support model established Caregiver Resource Centers across the State that provide a single point of entry where caregivers can access a wide array of services, support, and information.

The experience of caregiver support programs across the country suggests that a model centered on customer service is an effective approach for meeting the needs of caregivers. Key lessons from these programs include:

  • Take a family-systems perspective in determining "who is the client."
  • Treat the family—not just the person with disability—as the unit of analysis.
  • Provide services for middle-income families.
  • Offer a flexible service package, including an array of caregiver support services and a range of respite options.
  • Promote consumer direction.

References

Feinberg LF. Options for supporting informal and family caregiving: A policy paper. San Francisco (CA): The American Society on Aging; 1997 Aug.

Feinberg LF, Ellano C. Promoting consumer direction for family caregiver support: An agency-driven model. Generations 2000 Fall;24(3):47-53.

Feinberg LF, Pilisuk TL. Survey of fifteen States' caregiver support programs. Final report. San Francisco (CA): Family Caregiver Alliance; 1999 Oct.

Greene R, Feinberg LF. State initiatives for caregivers of people with dementia. Generations 1999 Fall;23(3):75-7.

U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging, and Long-term Care Policy. In-home supportive services for the elderly and disabled: A comparison of client-directed and professional management models of service delivery. Non-Technical Summary Report. Executive Summary. Washington (DC). 1999 Apr.


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