By the year 2020, 20% of the U.S. population will be older than 65 years. The largest percentage of growth is in elders 85 and over, a group at high risk for cognitive disorders such as Alzheimer's disease. Almost 19 million Americans report they have a family member with Alzheimer's. Since 7 out of 10 people with Alzheimer's live at home, lost productivity of care givers is estimated to cost American businesses $26 billion a year plus $7 billion annually related to costs for health and long-term care. Many elderly do not make plans for dealing with possible changes in cognitive status, and it is often left to family members to make difficult decisions about the care of cognitively impaired older adults. The number of people involved in making these decisions will increase as the population of the United States continues to age. Clearly, the experience of making these decisions needs to be reexamined. Prior research has overly narrowed the framework in which care decisions for cognitively impaired parents have been studied. The healthcare environment now offers multiple models of care for cognitively impaired patients. To fully explicate and describe this continuum of care requires a naturalistic study of how real world decisions are being made. Understanding what these care decisions mean to the persons who make them will lay the foundation for assistance needed by these families. Additionally, the findings were serve to inform policy decisions about the fragmented care system for the cognitively impaired elderly, and, possibly, decrease the cost to society in lost productivity. Qualitative methods can help build knowledge of this enormously complex and profound issue. Therefore, the purpose of this study is to describe the experiences of adult offspring in making decisions about care for cognitively impaired parents. The sample will drawn from adult offspring who have made a decision to use services from respite care, supportive living, assisted care, to long term over the course of the last year. The research strategy is Hermeneutic/Phenomenological (H/P), which sensitizes the researcher to the emerging concerns of the informants themselves. The depth of understanding gained from the H/P approach leads to more effective assessment tools, comprehensive curriculum for health care providers, direct patient interventions, and reconsideration of health care policy, all of which are aimed at improving family outcomes.

Agency
National Institute of Health (NIH)
Institute
Agency for Healthcare Research and Quality (AHRQ)
Type
Small Research Grants (R03)
Project #
1R03HS010762-01
Application #
6196673
Study Section
HSR Health Care Research Training SS (HCRT)
Program Officer
Harding, Brenda
Project Start
2000-07-01
Project End
2002-08-31
Budget Start
2000-07-01
Budget End
2002-08-31
Support Year
1
Fiscal Year
2000
Total Cost
Indirect Cost
Name
University of Virginia
Department
Type
Schools of Nursing
DUNS #
001910777
City
Charlottesville
State
VA
Country
United States
Zip Code
22904