Informal caregivers' experience of continence care provision to persons living with dementia

Abstract

Background: Incontinence is described as the involuntary leakage of urine and/or faeces. Dementia may lead a person to experience incontinence and generally it may take place in the moderate stage of dementia. Incontinence is perceived as one of the most challenging geriatric syndromes to handle by informal caregivers of persons living with dementia in the community. Providing continence care for a family member living with dementia can have a negative physical, psychosocial, emotional and financial impact on the caregiver. Informal caregivers‘ experience encompasses changes, losses, stress but may exhibit a number of coping mechanisms to deliver continence care. Objectives: The aim of the study was to explore and describe the experiences of Maltese informal caregivers in providing continence care to persons living with dementia in the community. The study looked into possible facilitators, challenges and unmet needs that hamper informal caregivers from delivering appropriate continence care as well as the caregivers‘ stress, social support and coping skills. Design and Participants: An exploratory descriptive phenomenological approach based on Husserl‘s descriptive phenomenological design was used. A purposive sample of eight Maltese informal caregivers that provide continence care to persons living with dementia in the community, participated in this study. Methods: Informal caregivers were recruited through the Dementia Intervention Team. Qualitative, semi-structured, face to face interviews were conducted and thematically analysed. Results: Four themes emerged from the data analysis that took place from audio-recorded, self-transcribed raw data. These included 'A Stressful Caregiving Experience', 'Change and Losses‘, 'Navigating the Way Through‘ and 'Need for Knowledge, Skills and Capacity for Learning ‘. Conclusion: This research highlighted how informal caregivers deal with stressful situations in different manners and that not all coping approaches are seen as positive and beneficial. Social support and knowledge related to both incontinence and dementia were two characteristics that appeared essential for coping. Such emerging findings establish the need to carry out a comprehensive assessment of the informal caregiver‘s needs that go beyond the care recipient‘s incontinence issues.