Living with incontinence: The experience of people with dementia

Abstract

Dementia is a distressing condition in which individuals progressively require the support of others. Many people experience problems with incontinence and continence management. The presence of incontinence is influential in decisions for people with dementia to move into a care home. This study, in the interpretative tradition, investigates for the first time the person with dementia’s perspective on these problems and their strategies for managing them. We conducted semi-structured conversational interviews with seven people with mild-to-moderate dementia and analysed the transcripts thematically. Our participants described both a variety of problems with incontinence and continence management, and their embarrassment and humiliation. Strategies included managing their presentation of self to others to keep such problems hidden, although it was evident that for some their cognitive problems led to strategies that were potentially problematic for others. In addition, some described the ways in which they acted to protect others, such as spouses, from the stigmatising effect of the incontinence.