A daughter is a daughter for the whole of her life : A study of daughters' responsibility for parents with dementia

Abstract

Informal caregiving for elderly people is a common care system in Sweden as well as in many other countries. Adult children assume a major role in providing care for their disabled elderly parents. This study describes daughters' feelings after many years of caregiving and attempts to gain an understanding of the motives that elicit and sustain their helping behaviour towards parents with dementia, positive aspects of caregiving are also investigated. The data were collected by means of interviews with the daughters and were focused on the qualitative aspects of their subjective feelings of caregiving in order to obtain a profound understanding of these experiences. The data were coded and categorized. The results showed that most of the parents were institutionalized and that the daughters did not cease their supportive activities when these older people entered an institution. They still experienced stress because of constraints, conflicts and loneliness in their caregiving role. Two-thirds of the daughters expressed positive feelings of caregiving, while the others were unable to identify such sentiments. Affection and reciprocity emerged as the most common motives for caring. Examples of their experiences are illustrated with quotations from the data. The results are discussed in relation to the attachment theory. Innovative ways for supporting daughters in this role must be found.