The Lived Experience and Meaning of the 'Source of Caring' in the Lives of Family Caregivers of Family Members with Alzheimer's and Other Dementias

There are over 15 million people providing unpaid care for someone in their lives with Alzheimer's or another dementia. Unpaid family caregivers provide 80% of care for Alzheimer's patients. Forty-three percent give care for up to four years and up to two- thirds of these caregivers are women (Alzheimer's Association, 2013, 2015). Caregiver burdens include the loss of the care recipient's personhood, loss of recognition of the caregiver by the care recipient, difficulty balancing self-care and sacrifice, and financial difficulties related to the hours of unpaid work (Caron & Bowers, 2003; Dewing, 2008; Family Caregiver Alliance: National Center on Caregiving 2005, 2012; Gallant & McConnell, 1997; Kittay, 1999; Kitwood, 1997).;This qualitative interpretive phenomenological study was focused on the lived experience of nine female family caregivers' of dementia patients, and an exploration of processes through which they engaged and sustained caring feelings for the family member. Additionally, the study explored their ability to continue giving physical and emotional care over a long period of time, including through the placement of the family member in a facility. This analysis led to an exploration of the social construction of caring work and of care for the aging.;The supra-ordinate phenomenological theme that emerged in this study was that of shaping experience/protecting relationships. The data revealed the caregivers make efforts to manage the care recipient's experience with the goal of avoiding damage to the relationship due to the need to take away the care recipient's independence. Within this over-arching theme, are the eight themes: emotion work, ego holding, emotional exhaustion, emotional self-care, the source of caring, intersubjectivity, personhood, and perspectives on caregiving. Explicit, implicit, and existential expressions of spirituality were identified in the data. In addition, the caregiver's lack of concern for themselves, and their focus on the care for the care recipient, provide confirmation for the developmental stages of the ethic of care, and suggest that caregivers may need support to move to more balanced levels of self- care. The findings of this study suggest that caregivers are engaged in a nuanced process of care that involves much interpersonal effort that has not been previously recognized.