Continence care for people with dementia living at home in Europe: a review of literature with a focus on problems and challenges

Abstract

Aims and objectives. To report the findings of a review of literature relating to the continence care of community-dwelling people with dementia in Europe. Background. More than two-thirds of people with dementia live at home, and many experience continence problems. Incontinence is a significant contributor towards institutionalisation. Care and support is often inadequate or inappropriate, and guidelines are lacking. This represents a failure to respect the human rights and dignity of this group. Design. A structured review of the literature relating to the continence care of community-dwelling people with dementia in Europe with a focus on problems and challenges. Methods. Search terms reflecting dementia, continence, care/management and guidelines for community-dwelling people with dementia were applied to four databases. Hand-searching was also carried out. A total of 208 articles were searched for content relating to problems and challenges linked to continence care for this group. Results. Six relevant articles were fully reviewed. The main difficulties and challenges included the following: (1) perceptions, (2) availability/provision of support and care, (3) financial cost, (4) mobility and the environment, (5) relationships and social inclusion and (6) emotional issues. Conclusion. Dementia and incontinence have profound effects on quality of life. The dearth of good quality data within this area and the findings of the review confirm the need for expert, consensus-based guidelines and appropriate research to ensure that the rights and dignity of people with dementia are respected. Relevance to clinical practice. The findings of the review will hopefully raise awareness amongst healthcare professionals in community practice of unmet What does this paper contribute to the wider clinical community?• This article calls for greater awareness amongst healthcare and social care professionals of the unmet needs of communitydwelling people with dementia and continence problems.• It highlights the importance of health and social care professionals providing a coordinated approach to the continence care of community-dwelling people with dementia, including a sound understanding of the social, emotional, relational and financial challenges associated with the experience of such problems in the community setting. needs of people with dementia and continence problems, and their caregivers, especially those related to social, financial, emotional and relational issues. The review does not provide solutions or guidance but is helpful in highlighting some of the key areas where special attention is needed.

Prevalence of incontinence among cognitively impaired older residents in long‐term care facilities in East Asia: A cross‐sectional study

“…Other major risk factors that were previously reported for urinary and fecal incontinence among people with dementia include psychotropic medication, 26 depression and building environment. 27 In the present study, the effect of psychotropics could not be determined because of the high prevalence of psychotropic prescriptions. However, the prevalence of depression noted on the medical record was low, and depression cannot account for the large variation in the prevalence of incontinence.…”

Dementia in men: some useful non‐pharmacological solutions

“…Good management of continence makes life easier for carers, but care and support is often inadequate or inappropriate and guidelines are lacking. 6 The loss of bladder and bowel control is associated with old age and frailty, as is dementia, but incontinence is not inevitable in dementia and every person with dementia is entitled to the same continence assessment, diagnosis and treatment as any other patient. In the community they should be referred to the continence nurse and/ or urology specialist as required.…”

Toileting difficulties in older people with and without dementia receiving formal in‐home care—A longitudinal study

“…Several studies have found that toileting difficulties including incontinence have a major impact on quality of life (Stenzelius, Mattiasson, Hallberg, & Westergren, 2004;Teunissen et al, 2004), mental health and social participation (Bedretdinova, Fritel, Zins, & Ringa, 2016;Felde, Bjelland, & Hunskaar, 2012;Stenzelius et al, 2004). Especially when combined with dementia, incontinence may cause great stress for both the individual and its caregivers (Finne-Soveri et al, 2008;Gove et al, 2016;Grant et al, 2013;Thomas et al, 2004). In a review recently published, great concern was expressed about the lacking knowledge on toileting difficulties in community-dwelling older European people with dementia (Gove et al, 2016).…”

“…Especially when combined with dementia, incontinence may cause great stress for both the individual and its caregivers (Finne‐Soveri et al, ; Gove et al, ; Grant et al, ; Thomas et al, ). In a review recently published, great concern was expressed about the lacking knowledge on toileting difficulties in community‐dwelling older European people with dementia (Gove et al, ). Among community‐dwelling older people in Norway receiving formal in‐home care, the prevalence of dementia is reported to be 42% (Wergeland et al, ), but information about the prevalence of toileting difficulties and whether the prevalence of toileting difficulties is higher in this group compared to those without dementia has been lacking.…”