ABSTRACT
For the past 25 years, family caregiving has been a prominent focus of gerontological research and practice. This emphasis has led to many important findings about the role of families and the burdens they experience; but this emphasis has caused us at times to lose sight of the person receiving care. From both legal issues and ethical perspective, older people themselves should be at the heart of decision making about their care, but their status as dependent often results in the presumption that they are no longer capable of making decisions for themselves. As a result, their preferences about the kind of care they would like to receive and their opinions about the care they are receiving have frequently been overlooked in the literature and in everyday practice. In this chapter, we propose that older people need to be included in the decision-making process about care, both for ethical and practical reasons; and that programs and services need to incorporate their perspective, even in situations when they can no longer articulate their needs. We look first at the theoretical and legal basis for autonomy. We then discuss the involvement of people who are cognitively intact in determining care preferences. The final section addresses issues of incorporating the perspective of people with dementia in planning their own care, including approaches for determining their preferences and examples of innovative programs that support their autonomy.
