Experiences of intimate continence care and the impact on the family dyad relationship for people living at home with dementia and their co-resident family members

Abstract

Objectives: The experience of providing/receiving intimate continence care between family members can be difficult and emotive. Often, for people living with dementia this seems an area of care overlooked by professionals. This study investigated the experiences of intimate continence care for people living with dementia and their family member (the family dyad), and whether they viewed this as impacting on their relationship. Method: Face-to-face interviews were conducted at 6 monthly intervals over a 12-month period with 13 carers (all family members) and one person living with dementia (13 family dyads) in England. Interviews were recorded and transcribed. Analysis of the data was achieved using a descriptive phenomenological method. Findings: Carers’ attitudes towards providing intimate continence care revealed a task-focused approach for some but feelings of disgust and distress for others. Four participants (including the participant living with dementia) reported that intimate continence care had strengthened their dyad relationship. However, some carers perceived the care and support received from health and social care practitioners to be insufficient, which placed extra stress on them and adversely affected their family dyad relationship. Conclusion: Implications of the study suggest that integrated and effective continence care and support for people living with dementia and their carers could (1) maintain the quality of the family dyad relationship, (2) help keep the person living at home, delaying an unwanted move to a care home and (3) consequently improve overall quality of life for individuals in the family dyad. Assuring integrated and effective continence care should be a priority for service funders and quality assurance regulators.