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

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.

A qualitative study of continence service provision for people living with dementia at home in the UK: Still inadequate?

“…There appears to be a disconnect between what continence services offer (treatment to improve the level of incontinence leakage) and what caregivers want (more information and support with coping with existing incontinence). As Burholt and colleagues note, nurses internationally are hampered by the lack of evidence-based interventions or even expert based guidance on how to support PWD and caregivers and this contributes to the nihilistic approach [ 14 ]. Remarkably, international continence guidance “boldly suggests that ‘most people with a dementia diagnosis living in the community can potentially be managed in a similar way to any other community‐dwelling adults in line with current guidelines’ [ 24 ].…”

“…Remarkably, international continence guidance “boldly suggests that ‘most people with a dementia diagnosis living in the community can potentially be managed in a similar way to any other community‐dwelling adults in line with current guidelines’ [ 24 ]. However, there is limited evidence to back up this assertion.” [ 14 ]. It is clear that dementia focused continence interventions to support both PWD and caregivers are urgently needed to inform policy and practice globally.…”

“…Furthermore, current UK based clinical or commissioning guidance, such as National Health Service (NHS) England Excellence in Continence Care [ 11 ], Minimum Standards for Continence Care in the United Kingdom [ 12 ] or Royal College of Nursing bowel care guidance [ 13 ] neglect to address this population’s disparate needs. This is not an issue that is specific to the UK; the lack of guidance has been noted internationally [ 14 ]. Therefore, it is perhaps to be expected that individual community continence services (within the UK and elsewhere) do not commonly have policy with content specifically aimed at meeting the needs of PWD [ 14 , 15 ].…”

“…This is not an issue that is specific to the UK; the lack of guidance has been noted internationally [ 14 ]. Therefore, it is perhaps to be expected that individual community continence services (within the UK and elsewhere) do not commonly have policy with content specifically aimed at meeting the needs of PWD [ 14 , 15 ].…”

Dementia care: Research and clinical innovation

“…An element of dementia care that is often omitted from both research and guidelines is that of promotion of continence, although highlighted in this special issue by Burholt et al (2020). Incontinence may occur because of the progression of dementia but can be due to other pathologies, which are often overlooked because of the fact that the person presenting with incontinence has dementia.…”