Family members, particularly daughters, are the primary caregivers (CGs) of mothers with Alzheimer's disease and related disorders. The past two decades have produced much information about the outcomes of caregiving on CGs' health and well-being. What is missing is an understanding of the moral principles underlying CGs' role as caregiver. This 2-year project will examine the influence of a caregiving daughter's sense of morality, as it is based in her belief system and culture, on her role as CG. We are thus examining how the meaning of caregiving has been shaped by an individual, communal and cultural belief system. Caregiving is at the crux of important moral and cultural concepts such as right and wrong, self and other, the meaning of """"""""love"""""""" or """"""""duty,"""""""" and aspects of self-esteem. This proposal uses new understandings of culture as dynamic and emergent in everyday interactions among individuals, in this case caregiving daughters and their demented mothers. An important value of emergent culture in regard to caregiving is folk morality, which refers to caregivers' propensity to act on principles that reference a personal belief system and guide behavior in caregiving. As a dynamic process folk morality reflects ethnic, family, religious, societal, and personal beliefs and values that act and interact to create meaning on the individual level. The construct of folk morality has been applied in other disciplines, but not as a principle for shaping research on caregiving and dementia. Through a qualitative methodology, 40 daughters of a demented mother (20 African-American and 20 white) will be ethnographically interviewed.
Aims of this project are: 1) to investigate how CGs' senses of folk morality inform perception of the experience of dementia caregiving and, 2) to understand how a folk morality of caregiving shapes and is shaped by a) CGs appraisal of caregiving conflict and well-being and, 2) the deeper structure of culture. We are exploring caregiving as a 'meaning- making' process that is shaped by a complex web of factors, such as culture, beliefs systems, and folk, popular and medical attributions of dementia. Data from this research will increase knowledge of caregiving, dementia and public health care on many diverse levels. Data will aid public health understanding of the meaning of caregiving to CGs, the lifeworlds of at-home CGs, and potentially inform public health policy and intervention based on this knowledge. ? ? ?
