Charlotte R. Stoner

Objectives To describe secondary mental healthcare utilisation and associated costs among patients diagnosed with dementia or mild cognitive impairment (MCI). Design Retrospective cohort study using routinely collected electronic health record data. Setting Secondary mental healthcare services within South London and Maudsley NHS (National Health Service) Foundation Trust (SLaM), a large NHS mental health provider in South London, UK. Participants Adults aged 18 years or older with a recorded diagnosis of dementia or MCI between 1 January 2010 and 31 December 2020. Patients surviving less than 1 year after diagnosis were excluded. The final cohort comprised 16 081 individuals. Primary and secondary outcome measures Service utilisation and SLaM mental health service costs during the 12 months before and after diagnosis, including inpatient, outpatient and memory clinic contacts. Results The proportion of patients with at least one recorded mental health service contact declined from 91% in the 12 months before diagnosis to 69% after diagnosis, an absolute reduction of 22 percentage points. Mean recorded SLaM mental healthcare costs per patient increased from £1497 before diagnosis to £2177 following diagnosis (mean increase £680; pConclusions Although recorded SLaM service use declined following diagnosis, mean costs per patient increased, alongside greater intensity of service use among service users. Understanding patterns of secondary mental healthcare utilisation and associated costs may help inform planning and resource allocation within dementia services.

Background: Dementia affects nearly 1 million people in the United Kingdom and their unpaid carers physically, psychologically, socially and economically, highlighting that both need support. Post-diagnostic support is recognised as inadequate globally. In England, it is fragmented or absent apart from primary care – leaving many feeling unsupported as the condition progresses. The Dementia PersonAlised Care Team research programme began in 2018 to address evidence gaps on the effectiveness of dementia support roles and what constitutes ‘good’ support. Objective: Dementia PersonAlised Care Team aimed to develop and evaluate an intervention comprising dementia support workers based in primary care, supporting people with moderate to severe dementia and their carers. Phase 1 focused on intervention development and feasibility testing. Phase 2 evaluated the dementia support workers’ value and impact. Our Peer Research Group contributed to the design, analysis and interpretation of data in both phases. Design and methods: Phase 1 employed a realist approach to develop theory, the intervention and practitioner support package. This was informed by literature, consulting experts by experience, academics and practitioners and a formative evaluation. A pilot cluster randomised controlled trial tested the feasibility of recruitment, outcome measures and eligibility criteria. Phase 2 included a realist longitudinal mixed-methods evaluation to determine what worked, for whom and in what circumstances. High-volume qualitative data included realist interviews with participants with dementia and carers at two time points, interviews with dementia support workers and general practitioner staff/other practitioners, observations, dementia support worker case notes and reflections, and medical records. Quantitative measures of health- and quality of life-related outcomes, experience of care, carer well-being and support, and resource use were collected at three time points. A mixed-methods integration was conducted following separate qualitative, quantitative and economic analyses. Setting and participants: Phase 1 recruited participants with dementia (some without capacity) and their carers (if present) from general practitioner practices in rural Devon and Greater Manchester. In phase 2, participants were recruited from practices in rural and coastal areas in Devon (high deprivation) and urban Greater Manchester (including areas with higher representation of South Asian communities). Intervention: The Dementia PersonAlised Care Team intervention, developed in phase 1, delivers personalised, proactive and integrated dementia care via trained dementia support workers embedded in primary care. Drawing on coaching principles, dementia support workers empower decision-making and address psychosocial, health and practical needs through flexible, ongoing support. Support is tailored to individuals’ and carers’ needs. Consented participants were offered 12 months of support, which is flexibly stepped up or down based on need. Findings: In phase 1, the Dementia PersonAlised Care Team intervention was tested in 10 general practitioner practices. COVID-19 necessitated switching to remote intervention delivery, recruitment and data collection. Intervention and recruitment strategy (including capacity assessment) were acceptable. However, only 51% (56/110) of the recruitment target was met, making a fully powered cluster randomised controlled trial unfeasible within the funding envelope. A mixed-methods longitudinal realist approach was therefore adopted for the evaluation (phase 2). In phase 2, 126 PwD and 121 carers were recruited from 13 practices – reaching 70% (126/180) of the recruitment target. Retention in the intervention was high (79%). However, participation in follow-up data collection was poor for all quantitative measures, for example, only 22% (28/126) of participants completed the Engagement and Independence in Dementia Questionnaire at 9–12 months. The longitudinal realist analysis identified four areas of positive impact linked to dementia support worker actions: living well, proactive care, reactive care and care transitions. Participants spoke about improved social engagement, medication management and holistic care outcomes despite the inevitable functional decline. Supervision and peer support for dementia support workers, along with joint work with practice teams, were key to delivering this care. Quantitative data showed either stable or declining trends except for carer perceptions of support, which improved over time. Realist-informed economic analysis identified 23 cases where dementia support workers likely prevented high-cost care escalation through early intervention, access to general practitioner records and ability to prompt general practitioners’ care. Resource use shifted towards increased primary/community care and reduced secondary care costs. At a caseload of 53 dyads at any one time, mean annual cost per dyad was estimated at £1222.48. Limitations: Low data completion rates, individual variability and the non-randomised design significantly limited utility of quantitative findings. Conclusions: This work demonstrated how gaps in post-diagnostic support for people with dementia and carers can be addressed through tailored, proactive support and dementia support workers being fully embedded in primary care. A comprehensive training and ongoing support package is essential for enabling dementia support workers to carry out their role. Future work: Further implementation research is needed to test delivery in changing National Health Service contexts, including whether different roles can deliver personalised dementia support. Study registration: This study is registered as ISRCTN90828574. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research Programme (NIHR award ref: RP-PG-0217-20004) and is published in full in Programme Grants for Applied Research ; Vol. 14, No. 17. See the NIHR Funding and Awards website for further award information.

Background This methodological paper reflects on how people with lived experience of dementia contributed to the development and refinement of a survey intended to identify priorities for future economic evaluation in dementia research. Although Patient and Public Involvement (PPI) is increasingly recognised as essential for producing relevant and ethical health research, people living with dementia are rarely included in PPI activities related to health economics, where outcomes are often predetermined by decision-making bodies. Method To support the development and refinement of the survey, a small bespoke PPI group comprising four individuals with lived experience in England reviewed draft survey materials through online meetings and helped ensure the survey was accessible and meaningful through feedback on survey clarity, accessibility, and response options. Results PPI contributions led to important refinements, including simplifying terminology, removing ambiguous or burdensome items, and enhancing overall usability. Discussion The findings demonstrated the significant value of involving PPI contributors early and collaboratively, showing that co-design approaches enrich the relevance and sensitivity of research tools. The experience also highlighted the need for tailored support and an accessible introduction to health economic concepts for PPI contributors, alongside broader participation across study stages and engagement in dissemination activities.

Objectives: To describe secondary mental healthcare utilisation and associated costs among patients diagnosed with dementia or mild cognitive impairment (MCI). Design: Retrospective cohort study using routinely collected electronic health record data. Setting: Secondary mental healthcare services within a large NHS mental health provider in South London, UK. Participants: Adults aged 18 years or older with a recorded diagnosis of dementia or MCI between 1 January 2010 and 31 December 2020. Patients surviving less than one year after diagnosis were excluded. The final cohort comprised 16,081 individuals. Primary and secondary outcome measures: Service utilisation and NHS mental health service costs during the 12 months before and after diagnosis, including inpatient, outpatient and memory clinic contacts. Results: The proportion of patients with at least one recorded mental health service contact declined from 91% in the 12 months before diagnosis to 69% after diagnosis. Among service users, mean NHS mental health costs increased from £1,497 to £2,177 per person following diagnosis (mean increase £680; p<0.001), driven primarily by inpatient care. Dementia diagnosis, younger age, male gender, living alone, greater cognitive impairment and higher clinical symptom burden were independently associated with higher costs. Ethnic differences in service use and costs were also observed. Conclusions: Although overall service engagement declined following diagnosis, costs increased among those continuing to access care, indicating greater intensity of service use. Understanding patterns of secondary mental healthcare utilisation and associated costs may help inform planning and resource allocation within dementia services. Strengths and limitations of this study: This study used a large retrospective cohort of 16,081 adults with mild cognitive impairment or dementia identified from routinely collected electronic health records within a major UK mental health provider. The Clinical Record Interactive Search (CRIS) platform enabled analysis of service utilisation and costs across inpatient, outpatient, and memory clinic services before and after diagnosis. The study examined healthcare utilisation within the same individuals during the 12 months before and after diagnosis, allowing comparison of changes over time. The analysis was restricted to secondary mental healthcare contacts recorded within South London and Maudsley NHS Foundation Trust and did not capture primary care, acute hospital care, social care, medication costs, or informal care. Routinely collected electronic health record data may contain missing or incomplete information, particularly for variables such as living situation and care home residence.

Many family members, friends and community members provide unpaid, informal care and support for people living with dementia (PLwD) (Patel et al., 2023). In the UK alone, there are an estimated 700...

Dementia is a significant global public health challenge which has substantial economic implications, largely driven by the increasing care needs of people living with dementia (Ward et al., 2022)....

Receiving a diagnosis of a physical health condition can present significant psychological challenges. Despite this, structured post-diagnostic support aimed at fostering psychological adjustment remains limited in many clinical settings. This systematic review aimed to identify and synthesise evidence on interventions designed specifically to promote psychological adjustment following such diagnoses, with a focus on evaluating their effectiveness and feasibility. A systematic review of MEDLINE, PsycINFO, Scopus and CINAHL from inception until May 2024. Studies were assessed for quality using the CASP and MMAT, and the impact of the intervention on outcomes of psychological adjustment, emotional adjustment, coping or similar were extracted. This review was PROSPERO registered (CRD42023452369). Forty-five articles were evaluated (n = 4,848). Most reported interventions in cancer (28/45), but other populations were represented including neurodegenerative disease, and neurological brain trauma. Interventions were heterogenous, but Cognitive Behavioural Therapy (CBT) or a Cognitive based psychotherapy were most common (n = 20) and improved psychological adaptation across clinical groups. Examples of other interventions included general psychotherapy (n = 3), Acceptance and Commitment Therapy (ACT; n = 2), and stress management (n = 3). Interventions that incorporated mindfulness were largely successful and were highly acceptable to participants. Multiple evidence-based interventions were identified that promote psychological adjustment. Further research is needed to explore the sustainability, scalability, and economic impact of these interventions across clinical settings.

Introduction Receiving a diagnosis of dementia is a seminal moment in many people’s lives. It can be associated with anger and grief for both the person with dementia and their network. Despite this, there is no provision for emotional support to help people affected by dementia manage the impact of receiving that diagnosis. As such, a postdiagnostic intervention to help people process and adjust to a diagnosis of dementia is needed. This protocol describes the initial work to be undertaken as part of a Programme Development Grant. The aims are to synthesise evidence for existing interventions, understand the implementation context and establish an advisory board. Methods and analyses Phase 1 will consist of two systematic reviews to synthesise research evidence for existing interventions in related areas. Phase 2 will consist of two qualitative research studies. Study 1 is a UK-wide qualitative survey to understand the current lived experience of receiving a diagnosis and postdiagnostic support. Study 2 is a local qualitative study in which three groups of stakeholders will be asked about the perceived barriers and facilitators to implementing a postdiagnostic intervention in Natuional Health Services (NHS). In Phase 3, an advisory group of people living with dementia, carers and other professionals will be established to provide advice and feedback and contribute to the codevelopment of the initial intervention. Ethics and dissemination Health Research Authority, 15 July 2024. All data will be held in accordance with North East London NHS regulations, who act as sponsor of this development work. We will engage with policy professionals in Study 2 (Phase 2) and through this network disseminate our findings to facilitate policy change. The use of coproduction to ensure people with dementias voices are heard throughout this work will result in impact in health and well-being.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Cognitive stimulation therapy (CST) is an evidence-based, group psychosocial intervention for people with dementia, and it has a positive impact on cognition and quality of life. CST has been culturally adapted for use globally. It was developed as a face-to-face intervention but has recently been adapted for web-based delivery. Objective: In this study, we aimed to explore the feasibility and acceptability of virtual CST (vCST) delivery in India and Brazil, emphasizing barriers and facilitators to implementation. Methods: A single-group, multisite, mixed methods, feasibility study was conducted, with nested qualitative interviews. Primary feasibility outcomes were recruitment rate, attendance, attrition, acceptability, and outcome measure completion. Exploratory pre- and postintervention measures, including cognition and quality of life, were assessed. Qualitative interviews were conducted with people with dementia, family caregivers, and group and organizational leaders following intervention delivery, and the data were analyzed using the Consolidated Framework for Implementation Research. Results: A total of 17 vCST group sessions with 59 participants were conducted for 7 weeks, with 53% (31/59) of participants attending all 14 sessions. Attrition rate was 7% (4/59), and outcome measure completion rate at follow-up was 68% (40/59). Interviews took place with 36 stakeholders. vCST was acceptable to participants and group leaders and enabled vital access to services during pandemic restrictions. While web-based services broadened geographic access, challenges emerged concerning inadequate computer literacy, poor technology access, and establishing interpersonal connections online. Exploratory, uncontrolled analyses indicated positive trends in quality of life but negative trends in cognition and activities of daily living, but these results were not statistically significant. Conclusions: vCST demonstrated feasibility and acceptability, serving as a crucial resource during the pandemic but raised challenges related to technology access, computer literacy, and long-term implementation. The study highlights the potential of vCST while emphasizing ongoing development and solutions to address implementation challenges.

Objectives: With the increasing prevalence of dementia worldwide, there is a growing need for an integrated approach to dementia care. Little is known at present about the benefits of educational interventions for informal caregivers of people living with dementia (PLWD) in low- and middle-income countries (LMICs). This review aimed to identify and synthesise the current research on these interventions. Method: Four databases (PsycINFO, Medline, Web of Sciences and Scopus) were searched, alongside Google Scholar and reference lists. The Downs and Black checklist was used for quality assessment and data relating to intervention characteristics, outcomes, and educational component features were compared. Results: Eighteen papers detailing 17 studies were included. All studies presented found at least one significant outcome/effect. Study comparison was difficult due to diverse methodologies, intervention structures, and outcomes. Study quality was also variable. Four studies had education as the primary focus, and most interventions utilised multicomponent and group-based designs. Interventions that included group delivery tended to find more significant results than individual approaches. Intervention length did not appear to influence efficacy. Regular delivery and an average intervention dosage of around 12 h appeared most effective. Conclusions: Research into educational interventions for caregivers in LMICs appears to be promising and can help guide future interventions towards clinical implementation. A multicomponent group intervention trialled in Egypt provided particularly favourable findings. Future studies should focus on understanding the active mechanisms within such interventions to optimize their effectiveness. Collaboration between LMICs, high-income countries (HICs), and caregivers is crucial in developing interventions tailored to meet caregiver needs whilst accounting for feasibility and equity for dementia care worldwide.