The transition to caregiving: the experience of family members embarking on the dementia caregiving career

Although there is an extensive literature on dementia caregiving, research on family members' adjustment to the onset of dementia and on the early stage of caregiving is limited. This article describes a phenomenological study based on twenty semi-structured interviews with spouses and adult daughters of someone with early/mild dementia or mild cognitive impairment (MCI). Participants were asked to describe the earliest changes in the parent or spouse and the changes to their everyday lives and in their relationships brought by cognitive impairment. These family members reported taking on many new responsibilities in a highly interactive caregiving process consisting primarily of decision-making and supervision. Many participants reported experiencing frustration, resentment, grief, and relational deprivation, along with increased protectiveness and tenderness towards the person with dementia. Most of the participants were ambivalent about seeking or accepting help from others and seemed to want to maintain the status quo as long as possible. Social workers meeting with families in the context of disclosure of a dementia diagnosis or the early adjustment period may help by identifying their losses, normalizing negative feelings, and helping families envision ways they could use outside help.