Consumer Voice and Choice in Long-Term Care

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

CHAPTER ONE
Older Consumers and
Decision Making:
A Look at Family Caregivers and
Care Receivers

Carol J. Whitlatch

We have a family discussion before we make any major decision about my
care. I get good care from my family
.”

—78-year-old woman with dementia, cared for by her
56-year-old daughter


BACKGROUND

Families play a central role in both the decision making and delivery of long-term care to the estimated 13 to 15 million Americans with adultonset cognitive impairment (e.g., Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury; Family Caregiver Alliance, 1999). Despite the magnitude of the number of persons living with cognitive and physical impairments, we know very little about how families make decisions about everyday care. According to Kane (1995, p. 89), “In long-term care, both the older person who perceives a need for help and family members who may decide to provide care have decisions to make. One decides whether to accept care; the other, whether to give it. Each is influenced

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