Family-based dementia care: experiences from the perspective of spouses and adult children



Spouses’and adult child rens’ experiences of being a caregiver to a relative with dementia were investigated and an intervention study was carried out and evaluated.

Study I aimed to investigate how adult children (n=81) experienced their role as primary caregivers of parents suffering from dementia. They were compared with children of parents without dementia (n=1 02). Daughters and sons were interviewed about experienced burden, their co-operation with the informal and formal network, and their willingness to remain as caregivers during the progression of the disease or ageing process. The results showed that the daughters reported more affection due to the caregiving role than the sons. About one third of the participants could not get relief from someone else. Avast majority of the children were not willing to remain as caregivers and care for the parent in the family home during the progression of the disease, even if they were employed as caregivers.

Study 11 described 17 daughters’ present feelings after many years of caregiving. The motives that elicited and sustained their helping behaviour towards parents with dementia were also investigated. Transcribed interviews were analysed by means of coding and categorization. Despite the parents’moving to an institution all the daughters continued to feel responsibility for the well-being of the elderly parent. The daughters still experienced constraints in their caregiving role and also feelings of loneliness. Most of the daughters could, however, express positive feelings in connection with caregiving. Affection and reciprocity emerged as the most common motives for caring.

The aim of study III was to compare subjective experiences of family caregivers; of individuals with different disease diagnoses. Comparisons were also made concerning relationship, and between caregivers; of persons living in different housings. Descriptive statistics were used to analyze interview data on 268 caregivers. The findings confirmed those of earlier studies, that caregiving most greatly effects caregivers of people with dementia. A surprising finding was that caregivers; of visually impaired persons reported strain and negative feelings in relation to the relative, as well as burden due to the caregiving role. Significant results also showed that women more often reported negative affect as did family caregivers whose relative lived in an institution

The aim of study IV was to describe which caring activities eight spouses performed when caring for a partner with dementia. The dyads were observed in their homes. A qualitative approach was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. Findings from the study illuminated invisible aspects besides the traditional hands-on caregiving. The spouses were caring for as well as about their partners.

In the intervention study (V) family caregivers and volunteers were trained together in study circles. Thereafter the volunteers replaced the caregivers in the homes on a regular basis permitting the caregivers some relief from the demands of caregiving. Interviews were conducted with the participants to gather information about their training and relief care experiences. The analysis of the transcribed interviews revealed that the study circle provided the caregivers opportunity to exchange experiences with other people in similar situation and increase their knowledge of care providing. The temporary relief care by the volunteers provided the relatives with feelings of security and relaxation. The satisfaction among the Circle Model participants was reciprocal. The volunteers also reported high satisfaction and appreciation for the knowledge received.

The studies contributed to an increased understanding of what it means to be a family caregiver of a person with a dementia disease and also shed some light on the invisible aspects of caregiving.

ISBN: 91-628-4740-6

© Wallis Jansson, 2001