Operationalising the Recovery College model with people living with dementia: a realist review.

OBJECTIVES: Post-diagnostic support is a significant factor in facilitating personal recovery following a diagnosis of dementia, but access is often inconsistent and insufficient. Recovery Colleges offer peer-led, co-produced courses that can support people to have meaningful lives and have been adapted for use in the context of dementia. A realist review was conducted to understand the application and sustainability of Recovery College dementia courses. METHOD: An iterative, five-step process combined literature published to 2023 with knowledge from stakeholders with lived and professional experience of dementia involved with Recovery College dementia courses (PROSPERO registration CRD42021293687). RESULTS: Thirty-five documents and discussions with 19 stakeholders were used to build the initial programme theory comprising of 24 context-mechanism-outcome configurations. Reoccurring factors included: attending to aspects of co-production and course delivery to ensure they promoted inclusion and were not compromised by organisational pressures; how stigma impacted access to course opportunities; and embedding personal recovery principles throughout course development to be relevant for people living with dementia and those who support them. CONCLUSION: People struggling to reconcile their future alongside dementia need practical and emotional support to access and benefit from Recovery College dementia courses, ways to achieve this will be explored through a realist evaluation.

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

BACKGROUND: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. OBJECTIVE: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. METHODS: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. RESULTS: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. CONCLUSIONS: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. TRIAL REGISTRATION: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography.

INTRODUCTION: Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. METHODS AND ANALYSIS: Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. ETHICS AND DISSEMINATION: The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher 'embedded participant' roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.

A Case Study of Co-production Within a Mental Health Recovery College Dementia Course: Perspectives of A Person With Dementia, Their Family Supporter and Mental Health Staff.

Background: Undertaking co-production as a power-sharing way to improve mental health dementia services remains uncommon, suggesting opportunities to apply knowledge from lived experience of people with dementia, may often be missed. One barrier is stigma, assuming people with progressive cognitive impairment cannot manage this level of participation, support peers nor offer a "valid" perspective. Purpose: This paper shares knowledge gained from a service evaluation that explored various experiences of a person with dementia, their family supporter and mental health staff, involved in co-producing a course about "living well" with dementia, within a mental health Recovery College. Design: A qualitative, case study approach used semi-structured interviewing and inductive thematic analysis. Findings: Co-production activities generated a shared sense of positivity, pride and privilege, highlighting positive effects in breaking down the "them and us" barriers common in traditional healthcare professional-service user relationships. Each individual had both something to offer and something to gain during the process. Staff identified challenges in the co-production process; in that balancing all the voices during meetings could be complex at times, and the process overall required considerable time commitment. Conclusion: Taking part in co-production at an appropriate level and with peer support is a relational activity seen to be valuable in powerfully, yet gently, challenging stigma and assumptions around dementia. Findings show that while the process of co-production requires time and dedication, there is overall value in involving people living with dementia both in co-production and in peer support. This provided a straightforward and beneficial means to inclusively improve post-diagnosis support and care quality within a memory service.

What influences self-perceived competence and confidence in dementia care home staff? A systematic review.

BACKGROUND: Dementia care staff working in long-term care settings are often exposed to a variety of complex situations that can be emotionally challenging, and a lack of adequate support and limited training opportunities may contribute to high levels of staff turnover in this area. Good-quality training may be beneficial for improving the quality of care provided, and in improving staff confidence and morale. This systematic review aimed to establish how dementia care home staff perceived their own competence and confidence in relation to the care they deliver, whether there are any specific interventions that improve these feelings, and whether feeling more competent and confident impacts on care delivery. METHOD: A search of the literature focusing on staff perceptions of competence and confidence identified 14 873 studies. Following the removal of duplicates and papers that did not meet the inclusion criteria, 19 studies were included in the review and subject to quality assessment. RESULTS: Studies varied in terms of quality and design, and were categorised as either intervention or non-intervention studies. Four studies found a significant increase in feelings of competence and confidence following intervention, although many studies did not statistically analyze their data. The most successful interventions seemed to be those that involved practical support alongside education, and non-intervention studies highlighted the importance of specific dementia and palliative care training with regard to feelings of competence and confidence. CONCLUSION: Teaching alone may not be an adequate method of training dementia care staff, and the most successful interventions were those where practical support was also provided. Most studies suggested that improvements in competence and confidence also had benefits for care delivery and staff wellbeing. More research needs to be done using validated outcome measures and with competence and confidence as the primary aim.

The role of nurse prescribers in memory services and their continuing professional development: A review of the literature.

BACKGROUND: Nurse prescribers (NPs) in memory services have a potentially important role in alleviating the burden of dementia on health care, but they require continuing professional development (CPD) specific to their scope of practice. AIMS: To inform development of CPD workshops for mental health NPs working in memory services, a review of the literature was undertaken regarding role and CPD issues of this professional group. DESIGN AND METHODS: Healthcare databases were searched using defined search terms alongside lateral searches. Study characteristics were extracted systematically, with results grouped thematically in the style of a narrative review. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, adapted for current methods (see Supporting Information File S1). RESULTS AND DISCUSSION: Nine articles specifically addressing nurse prescribing in memory services were found. Studies from broader areas were drawn upon. Considerable variation was found for how the role of memory service NPs might be defined, due in part to variation in characteristics of memory services. NPs, other clinical staff and patients have provided positive feedback to the introduction of the role in memory services and elsewhere. However, concerns around prescribing cautiousness of NPs were apparent. Little clinical or economic outcome data were found to compare opinions and experiences to, with none for NPs in memory services. Literature addressing CPD issues for NPs in memory services was nonexistent. Studies from surrounding areas suggest a problem with availability of CPD opportunities for nurse prescribers. CONCLUSION: This review highlights the paucity of literature for this area of inquiry, particularly for clinical, economic and other patient outcome data. RELEVANCE TO CLINICAL PRACTICE: Variation in the little existing evidence suggests development of CPD opportunities should spend time understanding issues at the local level. The gap in the literature in this area may impact policy decisions in the UK and elsewhere.