The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis

Abstract

Background Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers. Objective The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home. Method Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer’s disease. Interviews were analysed using Interpretative Phenomenological Analysis. Results Three axes emerged from the analyses: [1] the before conditions the after: the quality of the previous relationship with the parent with Alzheimer’s disease is a determining factor and allows the identification of three profiles of daughter caregivers: ‘the grateful’, ‘the resentful’ and ‘the ambivalent’, [2] when the relationship protects against the sense of burden: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer’s disease, and [3] alone or almost: the support network is desired when it is absent but kept at arm’s length when it is present. Discussion The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.