A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home

Incontinence in people with dementia is one of the factors associated with the decision to move to a care home. Managing incontinence adds to carer burden and has been reported by family carers as more difficult to manage than behavioural symptoms. Active management strategies have been reported to be associated with less carer depression. The purpose of this study was to investigate carers' perceptions of the range of incontinence problems they helped their relative with and the strategies they employed to manage these.

Family carers of people with dementia living in their own homes were recruited through primary care, specialist community mental health services and voluntary organisations. Qualitative semi structured interviews were conducted either face to face or by telephone and thematically analysed.

Thirty two carers were interviewed. They described a range of problems from supporting the person to remain independent in toileting, through to dealing with inappropriate behaviours, to containing and managing incontinence. All carers actively used problem solving strategies but sometimes these were not acceptable or understood by the person with dementia, particularly as the dementia progressed. Most carers reported protecting the person's dignity by not seeking health professionals help often until the point of a crisis. Once the carer has decided to seek help the responses from health professionals can be less than helpful, and carers report local health service policies on access to continence products to be inconsistent and often inappropriate to their circumstances. A few carers reported strategies for managing toileting and incontinence that have the potential for distress and harm to the person with dementia.

Primary care professionals could be more proactive in enquiry, repeated over time, about toileting and incontinence problems and in giving advice and information to reduce crisis and problems.