Impact of Urinary Incontinence and Toilet-Use Problems on People Living at Home With Dementia and Their Family Carers

ABSTRACT PURPOSE This survey aimed to characterize carers’ perspectives on the impact of continence and toilet-use problems on people living at home with dementia and their family carers. DESIGN Descriptive online survey. SUBJECTS AND SETTINGS One hundred thirteen family carers completed the survey. Most were female (n = 89 78%) and adult children (n = 66 58%). Most were caring for someone with urinary and fecal incontinence METHODS The survey was developed using existing data from qualitative interviews with family carers, people living with dementia and health care professionals and with input from stakeholders. Participants were family carers of people living at home with both dementia and continence care needs. Descriptive statistics and content analysis were used to summarize results. RESULTS Around a half of carers thought that incontinence affected the health of the person they cared for and over one-third said it limited the person from taking part in social activities and seeing friends/family. The most common continence problems reported by carers were maintaining toilet-related hygiene, inappropriate removal of absorbent or other continence products, repetitive toilet behaviors/rituals, refusal to wear absorbent or other continence products, refusal to accept help with hygiene, and aggression related to continence care. Carers reported their biggest continence-related challenges to be increased workload, cost of pads, bad smell, lack of knowledge/support, arguments, and difficulties protecting dignity. Carers would like practical help with learning how to care for incontinence, adequate continence pad provision, and proactive sign-posting to continence services. CONCLUSIONS Continence care can have a substantial and wide-ranging negative impact on people living at home with dementia and their carers. Strategies that can be tailored to individuals (both person with dementia and carer) to reduce the impact of these problems are urgently needed.