IntroductionMoral injury is the long-term effect of the experience of events that violate deeply held moral beliefs. Social workers in adult care settings are tasked with managing morally complex situations and make decisions that impact the lives of service users. Simultaneously, they adhere to their professional ethical code and organisational standards, potentially giving rise to moral injury. Little is known about these experiences. This qualitative descriptive study aimed to explore social workers' experiences of moral injury.MethodsRemote interviews were conducted with ten social work professionals, in adult services in England. Data were inductively analysed using reflexive thematic analysis.ResultsThree themes were identified: a) System-related impacts; b) Service-related impacts; c) Individual psychological impacts. Social worker moral injury can arise from efforts to uphold professional values whilst navigating limited resources, interprofessional conflicts, and working within a constrained system. Witnessing dehumanising, low-quality, and impersonal care is a major source of moral injury. This is marked by professional disempowerment, sadness, guilt, betrayal, and helplessness.DiscussionRecognising these experiences is important. Building psychosocial resilience through formal support is essential for moral repair. Application of the concept for social work, alongside further research, is paramount to adequately support staff.

In Adult Social Care, UK local authorities have statutory responsibilities for assessing needs and delivering services to ensure adults' wellbeing. Administrative data collected during this process may help local authorities' compliance with these duties. We developed and internally validated predictive models for older people (>- 60 years) receiving social care for whether they remained at home or were admitted to care homes, two years after index assessments, using administrative data from one English City authority. We enquired whether the right data, to predict older people's vulnerability to adverse outcome (care home) or evidence their strengths (remaining at home), were present in local authority systems, and if accurate datasets for large numbers of older people could be constructed to allow robust modelling. Logistic regression models were created with binary outcome (remaining at home/entering care homes). Sample size calculations determined the maximum number of candidate predictors we could consider for model development. 20,218 older people in the data cohort indicated we could consider a maximum of 46 candidate predictor parameters. In our final analyses we considered 31 candidate predictor parameters, in the areas of: age, sex, ethnicity, deprivation, housing tenure, abilities in activities of daily living, access to carer, Primary Support Reason, diagnosis of dementia. We used all data for model development and internal validation using cross-validation. Models were robust as to assumptions, with no evidence of overfitting and good predictive accuracy. Circumstances predicting strongly that older people would not remain at home were that they were: from other (non-white) ethnic groups, privately rented tenants or other (unstable) tenancies, not able to eat or keep their home habitable without difficulty, with their Primary Support Reason for personal care, mental health, or support with cognition. With public involvement partners, we created a prototype index for local authority use to inform professional decisions and/or local planning.

Background Accessing a diagnosis and receiving adequate care and support for dementia can often be subject to various inequalities. Personal-, community-, and infrastructure-level factors can contribute to and often intersect in causing unequal health and care outcomes. With a paucity of evidence to inform solutions for dementia inequalities, the aim of this public consultation exercise was to explore potential solutions to inequalities in dementia diagnosis and care with different dementia stakeholders. Methods Utilising a future workshop approach, we conducted 11 in-person and remote consultation workshops to discuss experienced barriers of accessing diagnosis and care; discuss an ideal-world scenario where no barriers exist; and solutions to reach more equitable dementia diagnosis and care with people with dementia, unpaid carers, health and social care professionals, and third sector representatives. Discussions were synthesised by the research team and one public consultation group and mapped against the Dementia Inequalities model. Results A total of 131 different stakeholders in dementia attended 11 workshops across England. Solutions were identified across three layers of inequalities, with the majority of solutions proposed on a community and infrastructure level. Examples included link workers, a social care career pathway, Community Champions, adequate home equipment, and digital training. Some solutions require Governmental input, such as creating career pathways in the social care workforce, similar to the NHS, to train and maintain good paid carers, as well as a cross-UK national dementia strategy raising the priority of dementia and required changes. Conclusions Dementia inequalities could be addressed via diverse and holistic approaches. With limited evidence to date on the impact of some of the proposed solutions, future research needs to build on these recommendations and design and test suitable interventions.

BACKGROUND:Patient heterogeneity is defined as variation across people, explainable by their characteristics. Heterogeneity in the population with severe mental illness (SMI) is highly relevant. Economic evaluations commonly use population averages, which do not account for patient heterogeneity. AIMS:To identify patient characteristics that should be considered for inclusion in economic evaluations in SMI. METHODS:SMI researchers working in the UK were recruited via email. Recruitment took a purposive and snowball sampling approach. The first and second surveys were completed individually online with a consensus threshold set at ≥75%. The final stage to finalise consensus comprised a ranking task and an online meeting to prioritise the list of patient characteristics. RESULTS:The consensus exercise identified 28 characteristics to account for patient heterogeneity. A prioritised list of ten key characteristics was also produced and included age, socioeconomic status, ethnicity, symptom types and severity, diagnosis, gender identity and/or sex registered at birth, baseline health and/or quality of life, adverse childhood experiences, support network and comorbidities. CONCLUSIONS:This list helps researchers identify, a priori, key patient characteristics. Studies are needed to validate the findings of the consensus exercise with data collection and analysis. We acknowledge that feasibility constraints may affect research.

ABSTRACT Background The need for social care, in the form of practical assistance and personal care, is increasing alongside a growing older population with long‐term conditions and places those with limited or no access to publicly funded care at risk of increasing levels of unmet need. Aim This systematic review sought to understand the role of social and health conditions in the need, demand, utilization, and expenditure on social care in the United Kingdom. Methods We searched Medline, CINAHL, EconLit, ASSIA, and the Campbell Collaboration from January 1, 2009 to April 14, 2025, and gray literature on August 21, 2024, for randomized trials, cohort studies, case control studies, and interrupted time series, cross‐sectional, and modeling studies of populations aged ≥ 60 years old, in a UK setting, that examined the association of social and health conditions with the need and demand for, use of and expenditure on social care. We conducted risk of bias assessments using ROBINS‐E for longitudinal studies, and intended to use Risk of Bias 2 for randomized trials. We applied GRADE to assess the certainty of evidence. Results were synthesized narratively, and presented in an Evidence Gap Map. Results We included 10 longitudinal cohort and eight cross sectional studies, study sample size ranged from 526 to > 400,000 participants. Five of the cohort studies were assessed as high risk of bias, and the cross sectional studies as moderate concern or high risk of bias. Older age was associated with increased unmet need for care in most studies, and living alone with increased unmet need for care and use of residential care. Results for ethnicity, deprivation and sex varied across studies, with studies using different measures of deprivation that limited comparability of findings. A range of long‐term health conditions were assessed, some studies indicated an association with an increased need and use of care; there were mixed findings for cost. For populations with cognitive impairment or dementia, the association with age and the use and cost of care varied, there was no clear association for sex, ethnicity and living alone; a previous hospital admission or ongoing health problems that included severity of dementia were associated with increased use of care. Conclusion Our review of UK evidence indicates that there is insufficient evidence to accurately identify populations age > 60 years that are at increasing risk for needing care due to their social and health conditions.

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. Plain language summary Support for people with dementia after diagnosis remains very limited and uneven nationally. The Dementia PersonAlised Care Team study examined how a dementia support worker based in general practitioner surgeries can best support people with dementia and their carers, and the value of such support. In phase 1, we consulted people with dementia, carers and experts, and examined the literature. We developed a dementia support worker role and training package, and worked out how to recruit and collect data from people with dementia, who may have lost capacity. In phase 2, we recruited people with dementia and their carers from general practitioner practices in Southwest and Northwest England. Practices were in rural, coastal, urban areas, some with higher deprivation levels or South Asian communities. One hundred and twenty-six people with dementia and 121 carers from 13 general practitioner practices participated. Participants received 12 months’ dementia support worker support. Multiple types of qualitative and quantitative data allowed us to examine value in different ways and how Dementia PersonAlised Care Team worked. Eighty per cent of participants stayed engaged with the support. Qualitative data showed how positive outcomes were associated with dementia support worker actions in four areas: living well, proactive care, timely reactive care, and care transitions. Additionally, there was some evidence that dementia support workers help avoid expensive negative outcomes. How dementia support workers were supported was also crucial. Quantitative data were hard to interpret due to low completion rates (22%) and a lack of controls. Only carers’ feelings of support improved over time, while other measures remained unchanged or declined slightly. The cost to support a person with dementia and their carer was £1222 per year. The study highlighted how positive outcomes are possible for many and how they came about. It demonstrated how the dementia support worker model can integrate with primary care to deliver support and provided guidance for organisations to start delivering dementia support worker care. Scientific summary Background Dementia currently affects almost 1 million people in the UK. The condition has physical, psychological, social and economic impacts that extend to unpaid carers, who may experience the emotional, physical and financial strain of caring. Support for both is, therefore, important. Unfortunately, post-diagnostic support remains inadequate globally and in England, or absent except for primary care. Many feel unsupported especially once beyond diagnosis and as the disease progresses. When the Dementia PersonAlised Care Team (D-PACT) research programme launched in 2018, evidence on the effectiveness of dementia support roles – variously known as dementia support workers (DSWs), advisors or care navigators – was limited and varied in models. Nor was it known what counts as ‘good’ post-diagnostic support. Although recent studies have begun addressing these gaps, questions remain. Aims and objectives The D-PACT study was funded by the National Institute for Health and Care Research (NIHR; PGfAR RP-PG-0217-20004; 2018–24) to develop and evaluate a personalised post-diagnostic support intervention delivered by DSWs based in primary care. Intended for people with moderate to severe dementia – who often miss out on care – and their unpaid carers, the intervention also aimed to respond to calls for a lead health or social care professional to act as a single point of contact as well as recommendations for a task-shifted approach to dementia care where primary care’s role is expanded. To achieve its aim, the programme carried out two phases of work. Phase 1 had two work packages (WPs). WP1 aimed to develop and iteratively test the programme theory (an explanation of how the D-PACT intervention could have its intended effects). An ‘intervention delivery platform’, that is a manual, training and supervision guide, was also developed. WP2 tested the feasibility of a cluster randomised controlled trial (cRCT); it demonstrated that the intervention was acceptable but that a RCT design was not feasible for the phase 2 evaluation. Phase 2 aimed to: (1) test and refine the D-PACT programme theory, (2) assess the intervention’s value (importance, usefulness) and impact (effects, positive or negative) in a range of settings (rural, urban, coastal, high deprivation, South Asian communities) and (3) advance methodology for community-based dementia studies, focusing on inclusive recruitment and meaningful outcome measurement for individuals with variable capacity, building on phase 1. Public and patient partners [‘Peer Research Group’ (PRG)] and a professional reference group (‘Expert Reference Group’) contributed to both phases. Methods Phase 1 (work package 1 and work package 2) A realist-informed approach to theory building was employed in WP1. A prospective phase developed initial programme theories (IPTs) and the intervention delivery platform. We: consulted stakeholders comprising people with dementia (PwD), academics and practitioners conducted a pragmatic review of existing literature and existing primary care interventions identified key principles underpinning personalised care (to form domain headings for IPTs and ensure the intervention was guided by these principles). In the feasibility study: IPTs were elaborated. The prototype intervention was tested via a realist-informed formative process evaluation that took place in general practitioner (GP) practices in Southwest (SW) (Devon) and Northwest (NW) (Greater Manchester) England, allocated to intervention or treatment as usual at a ratio of 3 : 1. Theory and intervention were refined based on qualitative data (semistructured realist interviews and observations) with those receiving the intervention (PwD and their carers) and those providing the intervention (DSWs and their supervisors). In both the prospective and feasibility phase, an ‘if-then’ heuristic was used to guide theory development. However, as discussed later (Phase 1: initial programme theory development), a decision was made to switch to using a Context-(intervention) Component-Mechanism-Outcome heuristic to configure programme theories. In WP2, trial methodology was developed by testing outcome measures, recruitment and eligibility criteria in recruited GP practices. Candidate primary [Dementia Quality Of Life Questionnaire (DEMQOL)] and secondary outcome measures [Psychological Outcome Profiles (PSYCHLOPS); Engagement and Independence in Dementia Questionnaire (EID-Q); modified Carer Wellbeing and Support (mCWS)] were selected on the basis of literature and consultation with the PRG. A pilot cRCT trial tested the feasibility of GP practice and participant eligibility criteria, recruitment, randomisation and retention. Phase 2 We conducted a longitudinal mixed-methods realist evaluation, using high-volume qualitative data from multiple sources, quantitative outcome and experience measures and resource use data collected at regular time points over the intervention period. People with a diagnosis of dementia and unpaid carers, as well as DSWs, their supervisors and staff from participating surgeries and the community were recruited. A minimum target of 90 (maximum 180) PwD and 80–160 carers (to account for PwD without carers) was set. Qualitative data comprised: realist interviews with individuals, carers (at two time points – 3–4 months and 9–12 months) and DSWs, DSW case notes, reflective logs, researcher observations and extraction of electronic health records. Quantitative measures for PwD included were the EID-Q and the Person-centred Community Care Inventory (PERCCI); carer support and well-being were assessed using the mCWS. In addition to resource use and EuroQol-5 Dimensions, five-level version (EQ-5D-5L), timesheets that recorded time on all activities were completed by DSWs. Quantitative measures, resource use and EQ-5D-5L were recorded at baseline [time (T) 0], 4–6 months (T1) and 9–12 months (T2). Three analyses were conducted: Case study analysis of longitudinal high-volume multiple qualitative data. Statistical analysis of quantitative outcome and experience measures collected at three time points. An exploratory realist-informed economic analysis, combining conventional health economics (HE) tools, cost the delivery of the intervention with realist approaches to understand the impact of the DSW on relatively low frequency but high-cost events like unplanned hospital admissions, respectively. Data were then integrated into a joint display matrix. Results Phase 1 work package 1 The D-PACT intervention, and related theory as to how it is intended to work and be supported, was the key output. DSWs, based in primary care, provide personalised and integrated support to PwD and their carers. Support in the D-PACT model is ongoing (i.e. people are not discharged); frequency and intensity depend on need. DSWs are trained to use a coaching-inspired approach to empower individuals in decisions about their health and care, as well as support in a range of areas depending on what matters to the PwD and carer. This includes psychosocial well-being, physical health, future planning, practical help, signposting to support elsewhere and joint work with primary care staff. DSWs are supported in turn via supervision, peer support and refresher training. Key learning from WP1 included: The intervention was highly acceptable to participants. The D-PACT model was more easily articulated as two tiers: Delivery tier: theories explained how outcomes (e.g. engagement, shared understanding) were generated for PwD and carers within specific contexts. Facilitation tier: theories explained how outcomes (e.g. readiness for the role) for the DSW were generated through training and supervision. Identified gaps in theory for phase 2, for example, theory relating to collaborative working within primary care, support with transition points, and how varying levels of readiness among participants affect outcomes and intervention delivery. Some outcomes may be observed only over time, after DSWs themselves had received sufficient ongoing support and developed confidence to deliver the intervention as intended. Remote delivery of the intervention, necessitated by COVID-19 lockdowns, could influence which mechanisms were triggered and needed to be addressed through training. Phase 1 work package 2 Participant retention and measures: By 12 months, 60.7% (34/56) of participants with dementia and 35.7% (20/56) of carers were lost to follow-up. Completion rates across measures were also low at follow-up: 10.7% (27/56) for PSYCHLOPS, 23.2% (13/56) for EID-Q and 28.6% (16/56) for DEMQOL. Carer completion rate of the mCWS was 42.9% (24/56). The EID-Q was selected for phase 2 because it mapped most closely onto programme theory outcomes. A measure for experience of care, the PERCCI, was added. The mCWS was retained in phase 2. The Montreal Cognitive Assessment (MoCA) was included to measure cognitive status of participants with dementia at baseline. Recruitment and eligibility A four-step approach to recruitment was developed (letters, phone call and visit) along with detailed procedures for consent with varied capacity, in person and remotely. Recruitment occurred during two active periods due to COVID-19: in-person (September 2019–March 2020) and remote (September 2020–March 2021). Ten out of 33 (30.3%) GP practices approached participated, with recruitment rates of 50% in the SW and 24% in the NW. Eligibility criteria for moderate to severe dementia were based on Addenbrooke’s cognitive examination III (> 85) or the modified Telephone Interview of Cognitive Status (> 29). This criterion was removed in phase 2. Ultimately, 56 individuals (13% of 421 approached) with dementia and their carers were enrolled, meeting 50.9% of the recruitment target. Phase 2 Recruitment, participants and retention Seventy per cent of the recruitment target was achieved: 126 participants with dementia (14.7% of those approached) and 121 carers were recruited from 13 GP surgeries (6 in Southwest Devon and 7 in Greater Manchester). Sixty-one per cent of participants with dementia were female, 5% were South Asian. Mean age was 68 years [standard deviation (SD) = 13]. Severe cognitive impairment was indicated by a mean MoCA score of 4 (SD = 3). Intervention engagement remained strong at 79.3%. However, data completion rates were low: 53.9% of participants and 57% of carers contributed at T1, and 23% (both groups) at T2. Not all returned usable questionnaires, further reducing sample size to be analysed. Realist case study findings (qualitative) This analysis revealed that DSWs delivered holistic and personalised support to both PwD (including those with other long-term conditions) and carers. A broad range of care and support needs were addressed. Achieved outcomes linked to DSW actions were seen across the four care domains, and included support to live well, improved physical and mental health, planning for the future and easing transitions in care. Mechanisms that led to ongoing disclosure, engagement and enactment of agreed actions (immediate outcomes) were triggered by early relationship-building by DSWs. These immediate outcomes created the context that facilitated DSWs’ delivery of personalised care. In order for the intended outcomes from personalised care to be realised, people needed to feel more ready to take next steps towards increasing their independence, health and quality of life. Challenges to achieving outcomes included limited community resources, insufficient buy-in from professionals and delays in accessing patient records. Some gaps were identified in the practitioner support package, such as vague role explanations, which sometimes delayed participants’ engagement. Insufficient DSW hours for those on part-time contracts [0.4 full-time equivalent (FTE) or lower] also affected delivery for a small number of cases. Over time, DSWs developed professional autonomy through supervision, training and collaboration with other professionals, enabling them to adapt and personalise care more effectively. The findings highlighted the importance of refining the support package and promoting professional collaboration to ensure consistent delivery of personalised care. Statistical analysis findings (quantitative measures) Median scores for EID-Q, PERCCI and mCWS measures were reported across time points. Median EID-Q scores declined from 73 (51–90) at T0 (N = 97/126; 76.9%) to 60 (44–78) at T1 (N = 51; 40.5%), before rising slightly to 67 (37–79) at T2 (N = 28; 22.2%). PERCCI scores for care experience remained stable. mCWS well-being scores for carers showed little change but declined at T2, while mCWS support scores improved. Findings should be interpreted cautiously due to the non-randomised design and data limitations. Health economics Six DSWs, equivalent to 3.1 FTEs, delivered the intervention with 1446 direct participant contact events over 12 months, averaging 11.5 events per dyad/PwD. Mean contact duration was 45.47 minutes, though support varied greatly, with 15% receiving under 1 hour annually and 9% exceeding 15 hours. DSWs also performed related activities like liaising with GPs, training and updating files. On average, DSWs spent 31.3 hours on each dyad/individual per year. Assuming 44 working weeks per year and a 37.5-hour week, we estimate a full-time DSW could support an average of 52.7 dyads/individuals at any one time per year at an estimated cost of £1222.48. An exploratory realist-informed economic analysis of qualitative data identified 24 cases where DSW actions (e.g. flagging an emerging infection, risk of falling or urgent need for medication review to the GP) helped mitigate high-cost events like unplanned hospital admissions. Access to GP records, ability to task GPs digitally and an ongoing relationship where trust/knowledge had been built with dyads were critical in achieving this outcome. Four instances of unprevented escalation highlighted challenges like stretched services, delayed DSW action due to uncertainty about solutions and dyads who were difficult to contact. These findings suggest DSWs may reduce high-cost inappropriate care in some cases, supporting the role of personalised, proactive intervention. Discussion Synthesis Qualitative and quantitative (including HEs) findings were examined in a joint matrix display. This revealed some discrepancies between quantitative and qualitative findings. EID-Q scores declined, while qualitative interviews suggested improvements in social engagement, medication management and other care aspects. Similarly, PERCCI scores on experience of care remained relatively stable but did not reflect the enhanced care described in interviews. mCWS measures of well-being showed an initial increase then decline, but did not capture the subjective experience reported in qualitative interviews. Only the mCWS measure of perception of support, which increased over time, was consistent with qualitative data. Overall, despite increasing needs as indicated by the EQ-5D-5L, DSWs might have helped mitigate or delay deterioration. Strengths Dementia PersonAlised Care Team is the first study to conduct a realist evaluation using high-volume longitudinal data. This enabled case-by-case analyses assessment of the impact of the intervention. It also supported further elaboration of an evidence-based model detailing how to achieve personalised dementia care based in primary care. Other methodological contributions include innovations around GP practice recruitment that drew on embedded researcher models and digital capabilities in order to reduce administrative burden and encourage participation. Limitations The key limitation was the poor completion rates at follow-up and non-randomised design, making interpretation of quantitative analyses problematic. Despite concerted efforts to recruit GP practices in a range of settings, the participant group was not as diverse as we had hoped. Conclusion The D-PACT programme theory outlines personalised support strategies for PwD and their carers, demonstrating impact in living well, addressing health needs via proactive and timely reactive care, future planning, and care transitions. Its manual, support package and detailed evaluation serve as key resources for providing dementia support in primary care. 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.

Summary Background Phenotypic age acceleration (PhenoAgeAccel), derived from PhenoAge, and MetaboHealth are composite exposures of biological ageing and metabolic health associated with dementia-related outcomes. Whether these associations are causal and reflect the exposures, constituent biomarkers, or both remains unclear. Methods This study included UK Biobank participants of White British genetic ancestry. MetaboHealth was derived from nuclear magnetic resonance (NMR) metabolomics and PhenoAgeAccel from clinical biomarkers and chronological age. Genome-wide association studies (GWAS) were conducted for MetaboHealth (n=272 568) and PhenoAgeAccel (n=274 077). Independent genome-wide significant variants were used as genetic instruments in two-sample Mendelian randomisation (MR) with FinnGen all-cause dementia summary statistics. Inverse-variance weighting was the primary MR method. Causal network analysis estimated relationships among constituent biomarkers and dementia. Findings GWAS identified 126 and 141 independent genome-wide significant variants for MetaboHealth and PhenoAgeAccel, of which 109 and 141 were retained as genetic instruments. MR found no evidence of a causal effect of genetically predicted MetaboHealth (per unit: OR 0·83, 95% CI 0·49–1·42; p=0·51) or PhenoAgeAccel (per year: OR 0·99, 95% CI 0·95–1·02; p=0·44) on all-cause dementia, with consistent findings across sensitivity analyses and robust MR methods. Lower lymphocyte percentage and higher NMR-derived glucose had direct relationships with dementia in the joint constituent-biomarker network. Interpretation MR provided no evidence that either composite exposure causally influenced dementia. The network prioritised lymphocyte percentage and NMR-derived glucose, supporting examination of composite exposures alongside their constituent biomarkers. Funding NIHR, UKRI, MRC, UK Dementia Research Institute, Innovate UK, and European Union. Full funding details are provided in the acknowledgements. Research in context Evidence before this study We searched PubMed from database inception to July 11, 2026, without language restrictions, using combinations of the terms “dementia”, “Alzheimer’s disease”, “vascular dementia”, “biological ageing”, “phenotypic age”, “PhenoAge”, “PhenoAgeAccel”, “MetaboHealth”, “metabolomics”, “genome-wide association study”, “Mendelian randomisation”, and “causal network”. Previous GWAS characterised the genetic architecture of PhenoAgeAccel and MetaboHealth. Longitudinal studies linked PhenoAgeAccel, derived from PhenoAge, to incident all-cause, young-onset, and late-onset dementia, dementia subtypes, cognition, and brain structure; MetaboHealth was associated with poorer cognitive performance, 10-year cognitive decline, and reduced functional independence. Related PhenoAge-based measures have also been studied in relation to modifiable factors and intervention response. Genetic causal evidence remained limited: one two-sample MR study found no evidence that PhenoAgeAccel affected Alzheimer’s disease or vascular dementia, while previous causal-discovery research placed Phenotypic Age within a dementia network without examining its constituent biomarkers. Added value of this study To our knowledge, this is the first study to genetically evaluate PhenoAgeAccel and MetaboHealth as composite exposures and then deconstruct their constituent biomarker relationships using causal network analysis in dementia. It also provides the first large-scale GWAS of MetaboHealth using the complete Phase 3 UK Biobank Nightingale dataset. The expanded GWAS identified additional loci and enlarged the available genetic instrument sets, while the network analysis resolved the constituent biomarker structure underlying both composite exposures. Implications of all available evidence For causal investigation, analysing PhenoAgeAccel and MetaboHealth alongside their constituent biomarkers reveals relationships obscured within the composite exposures. This does not preclude their use for prediction or risk stratification. Lymphocyte percentage and NMR-derived glucose therefore warrant further investigation as potential indicators of immune and metabolic pathways relevant to dementia.

Context: The COVID-19 pandemic presented unprecedented challenges for the adult social care sector, necessitating rapid changes in service delivery. Understanding the factors influencing the well-being of staff beyond the pandemic’s initial crisis response phase is crucial. Objective: The article examines the mental well-being, burnout, and the morally injurious experiences of the adult social care workforce in Greater Manchester during the UK’s ’Living with COVID’ phase, initiated in February 2022. Methods: An online survey collected responses from 251 social care staff. Regression analyses, employing a job-demands and resources framework (JD-R), considered demographic, occupational, and COVID-19-related factors to predict psychological outcomes. Findings: Significant levels of low mental well-being (34%) and burnout (31% likely experiencing burnout, 36% at risk) were observed. Additionally, 40% reported experiencing events that were potentially morally injurious. COVID-19-related factors had a significant impact on these outcomes. Satisfaction with infection control measures and access to sufficient resources were associated with more favourable outcomes. Considerable changes in daily activities and dissatisfaction with infection control measures were associated with increased levels of burnout and exposure to morally injurious experiences. Demographic and occupational factors had a lesser influence. Limitations: The study was conducted in a single geographic region of England with non-probability sampling methods and recruitment, potentially impacting the generalisability of the findings. Implications: The findings highlight the importance of adequate resources and infection control measures in reducing harm in the adult social care workforce and building resilience for future sector pressures.

Context: The COVID-19 pandemic presented unprecedented challenges for the adult social care sector, necessitating rapid changes in service delivery. Understanding the factors influencing the well-being of staff beyond the pandemic’s initial crisis response phase is crucial. Objective: The article examines the mental well-being, burnout, and the morally injurious experiences of the adult social care workforce in Greater Manchester during the UK’s ’Living with COVID’ phase, initiated in February 2022. Methods: An online survey collected responses from 251 social care staff. Regression analyses, employing a job-demands and resources framework (JD-R), considered demographic, occupational, and COVID-19-related factors to predict psychological outcomes. Findings: Significant levels of low mental well-being (34%) and burnout (31% likely experiencing burnout, 36% at risk) were observed. Additionally, 40% reported experiencing events that were potentially morally injurious. COVID-19-related factors had a significant impact on these outcomes. Satisfaction with infection control measures and access to sufficient resources were associated with more favourable outcomes. Considerable changes in daily activities and dissatisfaction with infection control measures were associated with increased levels of burnout and exposure to morally injurious experiences. Demographic and occupational factors had a lesser influence. Limitations: The study was conducted in a single geographic region of England with non-probability sampling methods and recruitment, potentially impacting the generalisability of the findings. Implications: The findings highlight the importance of adequate resources and infection control measures in reducing harm in the adult social care workforce and building resilience for future sector pressures.

Context: The COVID-19 pandemic presented unprecedented challenges for the adult social care sector, necessitating rapid changes in service delivery. Understanding the factors influencing the well-being of staff beyond the pandemic’s initial crisis response phase is crucial. Objective: The article examines the mental well-being, burnout, and the morally injurious experiences of the adult social care workforce in Greater Manchester during the UK’s ’Living with COVID’ phase, initiated in February 2022. Methods: An online survey collected responses from 251 social care staff. Regression analyses, employing a job-demands and resources framework (JD-R), considered demographic, occupational, and COVID-19-related factors to predict psychological outcomes. Findings: Significant levels of low mental well-being (34%) and burnout (31% likely experiencing burnout, 36% at risk) were observed. Additionally, 40% reported experiencing events that were potentially morally injurious. COVID-19-related factors had a significant impact on these outcomes. Satisfaction with infection control measures and access to sufficient resources were associated with more favourable outcomes. Considerable changes in daily activities and dissatisfaction with infection control measures were associated with increased levels of burnout and exposure to morally injurious experiences. Demographic and occupational factors had a lesser influence. Limitations: The study was conducted in a single geographic region of England with non-probability sampling methods and recruitment, potentially impacting the generalisability of the findings. Implications: The findings highlight the importance of adequate resources and infection control measures in reducing harm in the adult social care workforce and building resilience for future sector pressures.

Objectives UK carer assessments, in primary and social care, intend to discover what carers need in their caring roles and more widely. Evidence points to these not being configured sufficiently around carers of people with dementia, with potentially their breadth of needs not being recognised. We evaluated the extent of agreement, between carers of people with dementia, primary care, and social care professionals, on their recommendations from assessing carers’ needs in a range of circumstances. It is intended for findings to be taken forward as recommendations for policy and practice. Methods Comparison of judgements, between carers, primary and social care professionals, on whether real-life circumstances in 9 anonymised case vignettes necessitated a range of 14 services to support carers appropriately. Participants were 6 carers of people with dementia, 7 primary care staff, and 2 social care staff. We presented participants with each vignette and asked them to make binary judgements of whether they would recommend a range of services in each case. Percentage agreement and Fleiss’ kappa coefficients measured the level of agreement amongst multiple carers, primary and social care staff and overall. These agreements were then compared. Results Carers agreed in their judgements more than primary or social care professionals. The overall level of agreement from judgements made by all participants, however, was ‘slight’ with variability between participant groups and overall. The need for First Language Support in some cases was recognised, an improvement from previous evidence. Conclusions Case vignettes are useful for investigating judgements concerning these carers’ needs, so raising issues for policy and practice. It is essential for carer assessments to be more reliable in recommending services based on need to ensure less variability, depending on assessor and carers circumstances. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement Yes ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Not Applicable The details of the IRB/oversight body that provided approval or exemption for the research described are given below: University of Manchester Research Ethics Committee (Ref: 2022-14569-26301 14/12/2022) and, additionally, for primary care staff, the Health Research Authority (IRAS Project ID: 326181 23/HRA/1321). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Not Applicable I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Not Applicable I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Not Applicable The datasets generated and analysed in this study and the full anonymized case vignettes are publicly available via the Figshare data repository, at <https://doi.org/10.48420/25483270.v1> Participants consented to make anonymized data publicly available. <https://doi.org/10.48420/25483270.v1>

Abstract Background Recruiting individuals with dementia for clinical trials within primary care is complex, involving socio-cultural, psychological, geographical, and service-related factors. Phase 1 of the Dementia PersonAlised Care Team (D-PACT) study assessed the feasibility of evaluating a personalized dementia support intervention based in primary care in a cluster randomized controlled trial. COVID-19 necessitated a shift to remote working, providing the opportunity to compare in-person and remote capacity judgment and recruitment. Methods Using an inclusive multi-stage approach, in-person recruitment commenced September 2019 but was temporarily halted in March 2020 due to COVID-19. The study resumed recruitment remotely from September 2020 to March 2021. We analysed quantitative data comparing both periods, examining proportion of recruited GP practices and participants, participant recruitment rate per month and number of meetings/time required for consent and baseline. Qualitative interviews explored participants’ experiences of remote recruitment using thematic analysis. Results Pre-COVID-19, 61.5% (n = 8) of approached GP practices (n = 13) were recruited vs. 20% (n = 4) during COVID-19. In-person participant recruitment yielded 9.9% (22 recruited/228 approached), while remote recruitment achieved 17.2% (n = 34). 15 of the 34 had been approached prior to COVID-19, put on hold but re-approached/recruited remotely post-study pause. Even accounting for this, remote recruitment remained comparable at 9.6% (19/198). Monthly recruitment rate increased from 3.6 dyads in-person to 5.6 remotely. However mean time on recruitment was higher (9 hours per participant in-person vs.15 remotely), and time on specific activities differed: no travel time during COVID-19, offset by increased preparation/administration. Our multi-stage approach added to overall recruitment time but proved productive, achieving recruitment percentages of 40%, 39%, and 23% respectively from interested patients. Qualitative interviews (n = 13) indicated general acceptability of remote recruitment, with preferences tied to individual needs. Conclusions Our findings contribute to recruitment strategies for primary care trials by showing remotely judging capacity and recruiting people with dementia without specialist support using person-centred approaches is possible. While time-intensive, recruitment rates were not compromised. Researchers should consider flexible, hybrid approaches to increase participation. Understanding the time commitment essential for inclusive dementia recruitment will guide realistic target setting and study design. Funders should consider time and financial requirements in their decisions. Trial registration: ISRCTN80204146. Registration date 23/09/2019

Cost-effectiveness analyses commonly use population or sample averages, which can mask key differences across subgroups and may lead to suboptimal resource allocation. Despite there being several new methods developed over the last decade, there is no recent summary of what methods are available to researchers. This review sought to identify advances in methods for addressing patient heterogeneity in economic evaluations and to provide an overview of these methods. A literature search was conducted using the Econlit, Embase and MEDLINE databases to identify studies published after 2011 (date of a previous review on this topic). Eligible studies needed to have an explicit methodological focus, related to how patient heterogeneity can be accounted for within a full economic evaluation. Sixteen studies were included in the review. Methodologies were varied and included regression techniques, model design and value of information analysis. Recent publications have applied methodologies more commonly used in other fields, such as machine learning and causal forests. Commonly noted challenges associated with considering patient heterogeneity included data availability (e.g., sample size), statistical issues (e.g., risk of false positives) and practical factors (e.g., computation time). A range of methods are available to address patient heterogeneity in economic evaluation, with relevant methods differing according to research question, scope of the economic evaluation and data availability. Researchers need to be aware of the challenges associated with addressing patient heterogeneity (e.g., data availability) to ensure findings are meaningful and robust. Future research is needed to assess whether and how methods are being applied in practice.

Physical activity is important in the self-management of long-term conditions (LTCs). However, implementing physical activity into clinical practice is challenging, due to complex barriers including access to programmes, time pressures, and transport costs, for people with comorbidities, managing multiple responsibilities. Various digital tools exist to overcome these barriers and support wide-scale implementation to help people stay physically active. We explored the experiences, needs and preferences of healthcare professionals and commissioners, regarding the use of digital tools to support people with LTCs to self-manage using physical activity. This included barriers and facilitators to implementing digital tools to support people with LTCs in NHS settings. Semi-structured interviews were conducted (April 2021 to January 2022) in Wessex, southern England, UK. Purposive sampling was used to recruit general practitioners and healthcare professionals, and convenience sampling to recruit commissioners (n = 15). Transcripts were coded to develop conceptual themes allowing comparisons between and among perspectives, with the Normalisation Process Theory (NPT)'s four constructs used to aid interpretation. Results showed that most digital tools supporting physical activity for LTCs, are not well implemented clinically. Current digital tools were seen to lack condition-specificity, usability/acceptability evidence-base, and voluntary sector involvement (i.e., NPT: coherence or 'making sense'). Healthcare professionals and commissioners were unlikely to engage with use of digital tools unless they were integrated into health service IT systems and professional networks (i.e., NPT: cognitive participation), or adaptable to the digital literacy levels of service users and staff (i.e., NPT: collective action-needs for implementation). In practice, this meant being technically, easy to use and culturally accessible (i.e., NPT: collective action-promoting healthcare work). COVID-19 changed professional attitudes towards digital tools, in that they saw them being viable, feasible and critical options in a way they had not done before the pandemic. Implementation was also influenced by endorsement and trustworthiness enhancing the perception of them as secure and evidence-based (i.e., NPT: reflective monitoring). Our findings highlight that consideration must be given to ensuring that digital tools are accessible to both healthcare professionals and patients, have usability/acceptability, and are adaptable to specific LTCs. To promote clinical engagement, digital tools must be evidence-based, endorsed by professional networks, and integrated into existing health systems. Digital literacy of patients and professionals is also crucial for cross-service implementation.

Background Social care is the personal and practical assistance provided to individuals in their daily activities, personalised around their circumstances to promote wellbeing. It is provided by formal and informal carers, with formal care supported by considerable public resources through the Adult Social Care function of local authorities. While it is a matter of great public and policy concern that the system better meet people's needs and that public finances are not unsustainably strained, some key drivers of adult social care need, such as the relationships between age, social determinants, environmental conditions, and health status are not well understood at the system level. This is a protocol for a systematic review of the evidence to determine the health and social drivers that contribute to adults' need and demand for and utilisation of social care in the UK, and how these interact. Methods We will include quantitative studies of any experimental, observational or simulation/modelling design with average participant age ≥60, that examine the relationships between health status and/or social conditions, and their impact on adult social care need, demand, utilisation and expenditure. Informal and formal domiciliary, residential and nursing care, professional social work and occupational therapy will be included. Medline, CINAHL, EconLit, ASSIA Campbell Collaboration and grey literature will be searched. A single reviewer will screen titles/abstracts for eligibility, and two reviewers will independently screen the full-text of studies initially considered eligible. 15% of the included studies will be double-extracted, and remainder single extracted with an accuracy check. Risk of bias will be assessed using Cochrane Risk of Bias 2 and ROBINS-I. The findings will be grouped by health condition(s), the type of determinant, outcome and will be presented in an evidence gap map. If three or more comparable studies are identified, we will consider calculating the effect size. We will use GRADE to assess the evidence certainty. Discussion We will detail the evidence on the relationships (to include an indication of their contribution) between health status and social conditions with the need, demand, utilisation and expenditure on adult social care in the UK, informing further analyses in key evidence gaps. ### Competing Interest Statement BAC: is a co-investigator on a grant from NIHR awarded to the University of Cambridge. SS: is a founding member of the Cochrane Thematic Group People, Health Systems and Public Health, is a principal investigator on a grant from the Health Foundation and co-investigator on a grant from Cancer Research UK awarded to the University of Oxford. NR: declares no competing interests. AM: is a co-investigator on a grant from the Health Foundation awarded to the University of Oxford. LB: is a co-investigator on a grant from the Health Foundation awarded to the University of Oxford. PC: is a chief investigator on grants from NIHR awarded to the University of Manchester. AMS: Salary paid from the Health Foundation's REAL (Research and Economic Analysis for the Long-term) Demand Unit grant to the University of Oxford, whose focus is on design and delivery of research programmes to improve the quality of decision-making in health and social care. Associate Editor of the Systematic Reviews journal. ### Funding Statement This review was completed as part of work on a grant received by (SS, AM, LB) from the Health Foundation. The funder was not involved in the design, conduct, analysis, or interpretation of the review, or in the decision to submit the manuscript for publication. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes N/A - Review Protocol, no data available

BACKGROUND:Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial.AIM:Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact.DESIGN & SETTING:A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings.METHOD:High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis.CONCLUSION:The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations.

Abstract Objectives: This paper provides the data set from the Evi-Dem study, to promote data on the circumstances, services, costs, and outcomes of people in later stage dementia and their carers living at home in 17 areas of England. People with dementia’s sociodemographic data and data on their social networks, cognition, daily living activities, and quality of life were collected as were carers’ sociodemographic data and data on their quality of life, health and burden. The Evi-Dem project also provides data on the services received by people with dementia and their carers, and their costs. Inclusion criteria for participation were that they were aged 60 years and over, in later stages of dementia, had a carer, received an assessment/review of their care needs in the last three months, received support at home, and were resident within one of the sampled geographical areas. Data description: We provide sociodemographic data and data of cognitive, functional, and quality of life assessments of 518 people with dementia and their carers living at home across 17 areas of England. For each participant, standardized measures of these data are available as well as the volume, duration, and cost of support from services and carers and quality adjusted life years.

Cost-effectiveness analyses commonly use population averages, which can mask key differences across subgroups, potentially resulting in suboptimal resource allocation. This study sought to identify recent advances in methods for acknowledging patient heterogeneity in economic evaluations and to provide an overview of these methods.

‘Dementia - Personalised Care Team’ (D-PACT) is a five-year NIHR funded programme, using realist methods to develop and evaluate a complex, person-centred intervention for people with dementia and their carers. During the early project stages, we engaged with multiple stakeholders, including people with dementia and their carers, to develop an initial programme theory (IPT) – into an elaborated programme theory (EPT), by helping to uncover intervention mechanisms leading to outcomes in specific contexts. Realist research methods for developing programme theories are under-reported. In addition, there is a paucity of practical guidance on how to engage underserved and vulnerable populations in complex interventions programme theory development. We attend to these gaps, providing a worked example of how we meaningfully engaged people living with dementia and carers, alongside field experts, as stakeholders in this process. Our IPT theory building included multi-stakeholder primary research exercises and meetings with PPI contributors and an Expert Reference Group. We adapted interview schedules, and used visual resources and scenario-based activities, to support stakeholders to think in a ‘realist’ way. Using realist and thematic analyses led to hypothesis-building of causal mechanisms. Sharing findings with stakeholders led to further refinement of the intervention design, ready for testing in a subsequent feasibility study. We found that, despite the cognitive challenges associated with dementia, innovative methods of engagement can enable this stakeholder group to understand the realist approach and provide a platform through which to share their experiences. Taking a highly flexible and unhurried approach, led to novel insights into the complexities of person-centred dementia support. We argue for more detailed methodological guidance, based on realist principles, on how to collaborate with underrepresented populations to rigorously gain insights as to what is likely to make a difference and refine initial programme theory.