Consumer Voice and Choice in Long-Term Care

By Suzanne R. Kunkel; Valerie Wellin | Go to book overview

CHAPTER NINE
Caregivers as Consumers:
Perspectives on Quality

Suzanne R. Kunkel

Kathryn B. McGrew

Robert A. Applebaum

Shawn L. Davis


BACKGROUND

Families have historically been the primary provider of long-term care for older Americans. Almost 25 years ago, the General Accounting Office (GAO) estimated that more than 80% of all long-term care was provided by families (GAO, 1977). Since that time, there has been a continued increase in the size of the disabled older population, particularly in the proportion of the oldest old, those who are most likely to need long-term assistance. At the same time, social change such as an increasing number of dual-worker households has altered the family’s capacity to provide assistance. The increasingly prevalent role of caregiver requires enormous emotional, physical, and financial efforts, even though it is often willingly undertaken and a source of great personal satisfaction (Kunkel, Applebaum, & Nelson, 2004; Levine, Reinhard, Feinberg, Albert, & Hart, 2004). A recent national survey of older Americans found that more than 7 million caregivers assist more than 4 million disabled older people residing in the community (Administration on Aging [AOA], 2000). Recognizing that families remain the backbone of our long-term care system, the 2000 Older Americans Act established the National Family Caregiver Support Program (NFCSP). Other recent initiatives, including programs

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