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.

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.

The importance of the experiences of initial diagnosis and treatment failure when switching antiepileptic drugs.

We sought to understand the issues that lead from the need to change antiepileptic drugs (AEDs) and how this may influence someone's feelings regarding swapping to another drug. We conducted semistructured interviews with 14 people with epilepsy, four months after changing from AED monotherapy. Interviews were digitally recorded, transcripts were coded independently, and thematic analysis was undertaken through group work. There were seven major themes: failure, the reason behind the failure, and the experience itself; expectations; previous experience; personality and life events; side effects; impact of diagnosis; and outcome. Clinical outcome and patients' ideas of outcome were often discordant. Each drug change arises from a position of failure that elicits strong feelings of loss of control and vulnerability in participants. Recognizing the need for counseling of targeted individuals undergoing AED change is key. Unresolved emotional issues surrounding biographical disruption following diagnosis were potent modifiers of the change process.

Epilepsy: creative sparks.

An epilepsy diagnosis is very verbal, relying on witness history, personal narrative and analysis of how people describe the experience. Occasionally however, non-verbal descriptions of seizures allow us to gain a fuller understanding of this complex disorder. Artists are often inspired by personal experience, so it should be no surprise to find people depicting images of ill health, both their own and people they have observed. Furthermore, an ailment or affliction may influence an artist's portfolio over their lifetime, such as de Kooning's Alzheimer's disease and Monet's glaucoma. Epilepsy (in contrast with cerebrovascular or neurodegenerative disease) may present not just with a loss of function but with unusual super-added experiences such as déjà vu, ecstatic auras or hallucinations. Here we describe some artists who were thought to have had epilepsy, and the way in which their seizures influenced their art. It appears that for some, they have succeeded despite, rather than because of, their epilepsy and that rather than be inspired by their symptoms they were ashamed of them. If there is a common theme, it is in the unwanted psychological harm of some seizures provoking dark, frustrated imagery.