“They're still in control enough to be in control”: Paradox of power in dementia caregiving

Based on an interview study of 26 employed women dementia caregivers, we have found that caregiving involves a complex relationship that is characterized as a paradox in which the exercise of power creates an experience of powerlessness on the part of the caregiver; that the care recipients are not powerless, but encourage as well as resist attempts at providing care; and this relationship occurs in the context of a culture that influences and controls the family through the production of knowledge that is used to shape the caregiving relationship and give direction to the caregiver's actions. The control achieved by the use of knowledge of medicine and gender is incomplete and is thus embraced yet resisted by caregivers who see the inadequacy of the knowledge for achieving the goal of loving, dignified care.