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Review
. 2022 Jul;31(13-14):1933-1946.
doi: 10.1111/jocn.15537. Epub 2020 Nov 15.

A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion

Vanessa Burholt  1   2 , Johanna Davies  2 , Michal Boyd  3 , Jane M Mullins  2 , E Zoe Shoemark  2 ; Centre for Ageing, Dementia Research, Expert Review Group on Continence, Dementia
Affiliations
Review

A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion

Vanessa Burholt et al. J Clin Nurs. 2022 Jul.

Abstract

Aims and objectives: To identify research undertaken in the last decade addressing continence for people living with dementia (PLWD) in the community. To highlight gaps and develop recommendations for future research, taking into account the experiences and priorities of PLWD, caregivers and healthcare professionals.

Methods: A critical review with an Expert Review Group (ERG) comprising researchers, PLWD and facing continence issues, caregivers and other professional stakeholders. Findings are reported in line with the COREQ and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklists.

Background: Caregivers rate the independent use of the toilet as the most important activity for PLWD to retain. However, in 2009 a review identified shortfalls in knowledge and praxis around promoting continence and managing incontinence for PLWD in the community. As absolute numbers of people with dementia are predicted to increase, it is imperative to examine whether these deficits have been addressed.

Results: Of 3,563 records identified, 57 full-text articles were reviewed. The ERG developed a conceptual model to summarise research evidence according to the extent of the challenge (neuropathology and clinicopathology, prevalence and incidence), gateways to continence services, effectiveness of interventions, outcomes and the potential influences of personal resources, socio-cultural factors and environmental contexts.

Conclusions: Research on (in)continence for PLWD in the community is under-developed and has not increased substantially over the last decade. ERG recommendations for future research included user involvement to identify appropriate quality indicators to assess the effectiveness of interventions.

Relevance to clinical practice: There is insufficient evidence on which to base decisions on continence care for PLWD in the community. Omission from continence care guidelines has the effect of marginalising and silencing this population. User involvement in clinical research and developing practice guidelines has the potential for positive systems change.

Keywords: caregivers; community dwelling; continence; dementia; home care; social care.

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Conflict of interest statement

The authors declare that there are no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Flow diagram for article selection
FIGURE 2
FIGURE 2
Expert Review Group's conceptual model of research areas relevant to continence for people living with dementia in the community
See this image and copyright information in PMC

References

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