The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

BACKGROUND: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. METHODS: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. RESULTS: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. CONCLUSIONS: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.

Assessing Sodium Intake in Middle-Aged and Older Adults with Elevated Blood Pressure: Validation of Spot Urine Excretion and Dietary Survey-Derived Estimates.

This cross-sectional study evaluated the validity of three alternative methods compared to the gold standard 24-h urine collection for estimating dietary sodium intake, a modifiable risk factor for hypertension, among middle-aged and older adults with elevated blood pressure. These included spot urine collection (using Kawasaki, Tanaka, and INTERSALT equations), 24-h dietary recall, and food frequency questionnaire responses, compared to 24-h urine collection in a subset of 65 participants (aged 50-75 years, 58.5% women, 61.6% hypertensive) from the DePEC-Nutrition trial. The validity of the methods was assessed using bias, the Spearman correlation coefficient (SCC), the intraclass correlation coefficient (ICC), and Bland-Altman analysis. Among the alternative methods, spot urine collection using the Kawasaki equation showed the strongest correlation (SCC 0.238; ICC 0.119, 95% CI -0.079 to 0.323), but it exhibited a significant bias (1414 mg/day, p-value < 0.001) relative to 24-h urine collection. Conversely, dietary surveys had a smaller bias but wider limits of agreement. These findings underscore the complexities of accurately estimating dietary sodium intake using spot urine collection or dietary surveys in this specific population, suggesting that a combination or the refinement of existing methodologies might improve accuracy. Further research with larger samples is necessary to develop more reliable methods for assessing sodium intake in this high-risk group.

Social prescribing for people living with dementia (PLWD) and their carers: what works, for whom, under what circumstances and why - protocol for a complex intervention systematic review.

INTRODUCTION: Dementia is a complex medical condition that poses significant challenges to healthcare systems and support services. People living with dementia (PLWD) and their carers experience complex needs often exacerbated by social isolation and challenges in accessing support. Social prescribing (SP) seeks to enable PLWD and their carers to access community and voluntary sector resources to support them address such needs. Existing research, however, does not describe what SP interventions are currently in place in dementia care. Little is known about the needs these interventions are designed to address, the reasons that lead PLWD and their carers to participate in them, their effectiveness and the extent to which they could increase positive health outcomes if adopted and how. METHODS AND ANALYSIS: A complex intervention systematic review of SP for PLWD and/or their carers will be conducted using an iterative logic model approach. Six electronic (MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and Cochrane/CENTRAL) and two grey literature databases (EThOS and CORE) were searched for publications between 1 January 2003 and June 2023, supplemented by handsearching of reference lists of included studies. Study selection, data extraction and risk of bias assessment, using Gough's Weight of Evidence Framework, will be independently performed by two reviewers. A narrative approach will be employed to synthesise and report quantitative and qualitative data. Reporting will be informed by the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Interventions extension statement and checklist. ETHICS AND DISSEMINATION: No ethical approval is required due to this systematic review operating only with secondary sources. Findings will be disseminated through peer-reviewed publications, conference presentations and meetings with key stakeholders including healthcare professionals, patient and carer groups, community organisations (eg, the Social Prescribing Network and the Evidence Collaborative at the National Academy for Social Prescribing), policymakers and funding bodies. PROSPERO REGISTRATION NUMBER: CRD42023428625.

Delirium is more common and associated with worse outcomes in Parkinson's disease compared to older adult controls: results of two prospective longitudinal cohort studies.

BACKGROUND: Inpatient prevalence of Parkinson's disease (PD) delirium varies widely across the literature. Delirium in general older populations is associated with adverse outcomes, such as increased mortality, dementia, and institutionalisation. However, to date there are no comprehensive prospective studies in PD delirium. This study aimed to determine delirium prevalence in hospitalised PD participants and the association with adverse outcomes, compared to a control group of older adults without PD. METHODS: Participants were hospitalised inpatients from the 'Defining Delirium and its Impact in Parkinson's Disease' and the 'Delirium and Cognitive Impact in Dementia' studies comprising 121 PD participants and 199 older adult controls. Delirium was diagnosed prospectively using the Diagnostic and Statistical Manual of Mental Disorders 5th Edition criteria. Outcomes were determined by medical note reviews and/or home visits 12 months post hospital discharge. RESULTS: Delirium was identified in 66.9% of PD participants compared to 38.7% of controls (p < 0.001). In PD participants only, delirium was associated with a significantly higher risk of mortality (HR = 3.3 (95% confidence interval [CI] = 1.3-8.6), p = 0.014) and institutionalisation (OR = 10.7 (95% CI = 2.1-54.6), p = 0.004) 12 months post-discharge, compared to older adult controls. However, delirium was associated with an increased risk of developing dementia 12 months post-discharge in both PD participants (OR = 6.1 (95% CI = 1.3-29.5), p = 0.024) and in controls (OR = 13.4 (95% CI = 2.5-72.6), p = 0.003). CONCLUSION: Delirium is common in hospitalised PD patients, affecting two thirds of patients, and is associated with increased mortality, institutionalisation, and dementia. Further research is essential to understand how to accurately identify, prevent and manage delirium in people with PD who are in hospital.

Digital technologies to prevent falls in people living with dementia or mild cognitive impairment: a rapid systematic overview of systematic reviews.

OBJECTIVE: Falls are a common cause of potentially preventable death, disability and loss of independence with an annual estimated cost of £4.4bn. People living with dementia (PlwD) or mild cognitive impairment (MCI) have an increased fall risk. This overview evaluates evidence for technologies aiming to reduce falls and fall risk for PlwD or MCI. METHODS: In October 2022, we searched five databases for evidence syntheses. We used standard methods to rapidly screen, extract data, assess risk of bias and overlap, and synthesise the evidence for each technology type. RESULTS: We included seven systematic reviews, incorporating 22 relevant primary studies with 1,412 unique participants. All reviews had critical flaws on AMSTAR-2: constituent primary studies were small, heterogeneous, mostly non-randomised and assessed as low or moderate quality. Technologies assessed were: wearable sensors, environmental sensor-based systems, exergaming, virtual reality systems. We found no evidence relating to apps. Review evidence for the direct impact on falls was available only from environmental sensors, and this was inconclusive. For wearables and virtual reality technologies there was evidence that technologies may differentiate PlwD who fell from those who did not; and for exergaming that balance may be improved. CONCLUSIONS: The evidence for technology to reduce falls and falls risk for PlwD and MCI is methodologically weak, based on small numbers of participants and often indirect. There is a need for higher-quality RCTs to provide robust evidence for effectiveness of fall prevention technologies. Such technologies should be designed with input from users and consideration of the wider implementation context.

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Selenium status and its determinants in very old adults: insights from the Newcastle 85+ Study.

There is a dearth of data on Se status in very old adults. The aims of this study were to assess Se status and its determinants in 85-year-olds living in the Northeast of England by measuring serum Se and selenoprotein P (SELENOP) concentrations and glutathione peroxidase 3 (GPx3) activity. A secondary aim was to examine the interrelationships between each of the biomarkers. In total, 757 participants (463 women, 293 men) from the Newcastle 85+ Study were included. Biomarker concentrations were compared with selected cut-offs (serum Se: suboptimal 70 µg/l and deficient 45 µg/l; SELENOP: suboptimal 4·5 mg/l and deficient 2·6 mg/l). Determinants were assessed using linear regressions, and interrelationships were assessed using restricted cubic splines. Median (inter-quartile range) concentrations of serum Se, SELENOP and of GPx3 activity were 53·6 (23·6) µg/l, 2·9 (1·9) mg/l and 142·1 (50·7) U/l, respectively. Eighty-two percentage and 83 % of participants had suboptimal serum Se (< 70 µg/l) and SELENOP (< 4·5 mg/l), and 31 % and 40 % of participants had deficient serum Se (< 45 µg/l) and SELENOP (< 2·6 mg/l), respectively. Protein intake was a significant determinant of Se status. Additional determinants of serum Se were sex, waist:hip ratio, self-rated health and disease, while sex, BMI and physical activity were determinants of GPx3 activity. There was a linear association between serum Se and SELENOP, and nonlinear associations between serum Se and GPx3 activity and between SELENOP and GPx3 activity. These findings indicate that most participants had suboptimal Se status to saturate circulating SELENOP.

A realist evaluation of an enhanced court-based liaison and diversion service for defendants with neurodevelopmental disorders.

BACKGROUND: In England, court-based mental health liaison and diversion (L&D) services work across courts and police stations to support those with severe mental illness and other vulnerabilities. However, the evidence around how such services support those with neurodevelopmental disorders (NDs) is limited. AIMS: This study aimed to evaluate, through the lens of court and clinical staff, the introduction of a L&D service for defendants with NDs, designed to complement the existing L&D service. METHODS: A realist evaluation was undertaken involving multiple agencies based within an inner-city Magistrates' Court in London, England. We developed a logic model based on the initial programme theory focusing on component parts of the new enhanced service, specifically training, screening, signposting and interventions. We conducted semi-structured interviews with the court staff, judiciary and clinicians from the L&D service. RESULTS: The L&D service for defendants with NDs was successful in identifying and supporting the needs of those defendants. Benefits of this service included knowledge sharing, awareness raising and promoting good practice such as making reasonable adjustments. However, there were challenges for the court practitioners and clinicians in finding and accessing local specialist community services. CONCLUSION: A L&D service developed for defendants with NDs is feasible and beneficial to staff and clinicians who worked in the court setting leading to good practice being in place for the defendants. Going forward, a local care pathway would need to be agreed between commissioners and stakeholders including the judiciary to ensure timely and equitable access to local services by both defendants and practitioners working across diversion services for individuals with NDs.

Breathlessness limiting exertion in very old adults: findings from the Newcastle 85+ study.

INTRODUCTION: Long-term breathlessness is more common with age. However, in the oldest old (>85 years), little is known about the prevalence, or impact of breathlessness. We estimated breathlessness limiting exertion prevalence and explored (i) associated characteristics; and (ii) whether breathlessness limiting exertion explains clinical and social/functional outcomes. METHODS: Health and socio-demographic characteristics were extracted from the Newcastle 85+ Study cohort. Phase 1 (baseline) and follow-up data (18 months, Phase 2; 36 months, Phase 3; 60 months, Phase 4 after baseline) were examined using descriptive statistics and cross-sectional regression models. RESULTS: Eight hundred seventeen participants provided baseline breathlessness data (38.2% men; mean 84.5 years; SD 0.4). The proportions with any limitation of exertion, or severe limitation by breathlessness were 23% (95% confidence intervals (CIs) 20-25%) and 9% (95%CIs 7-11%) at baseline; 20% (16-25%) and 5% (3-8%) at Phase 4. Having more co-morbidities (odds ratio (OR) 1.34, 1.18-1.54; P < 0.001), or self-reported respiratory (OR 1.88, 1.25-2.82; P = 0.003) or cardiovascular disease (OR 2.38, 1.58-3.58; P < 0.001) were associated with breathlessness limiting exertion. Breathlessness severely limiting exertion was associated with poorer self-rated health (OR 0.50, 029-0.86; P = 0.012), depression (beta-coefficient 0.11, P = 0.001), increased primary care contacts (beta-co-efficient 0.13, P = 0.001) and number of nights in hospital (OR 1.81; 1.02-3.20; P = 0.042). CONCLUSIONS: Breathlessness limiting exertion appears to become less prevalent over time due to death or withdrawal of participants with cardio-respiratory illness. Breathlessness severely limiting exertion had a wide range of service utilisation and wellbeing impacts.

Protocol for the feasibility and implementation study of a model of best practice in primary care led postdiagnostic dementia care: PriDem.

INTRODUCTION: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers. METHODS AND ANALYSIS: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness. ETHICS AND DISSEMINATION: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning. TRIAL REGISTRATION NUMBER: ISRCTN11677384.

National UK guidelines for the management of paediatric craniopharyngioma.

Although rare, craniopharyngiomas constitute up to 80% of tumours in the hypothalamic-pituitary region in childhood. Despite being benign, the close proximity of these tumours to the visual pathways, hypothalamus, and pituitary gland means that both treatment of the tumour and the tumour itself can cause pronounced long-term neuroendocrine morbidity against a background of high overall survival. To date, the optimal management strategy for these tumours remains undefined, with practice varying between centres. In light of these discrepancies, as part of a national endeavour to create evidence-based and consensus-based guidance for the management of rare paediatric endocrine tumours in the UK, we aimed to develop guidelines, which are presented in this Review. These guidelines were developed under the auspices of the UK Children's Cancer and Leukaemia Group and the British Society for Paediatric Endocrinology and Diabetes, with the oversight and endorsement of the Royal College of Paediatrics and Child Health using Appraisal of Guidelines for Research & Evaluation II methodology to standardise care for children and young people with craniopharyngiomas.

Associations Between Local Area Deprivation and Physical Activity Participation in People with Cognitive Impairment in the North East of England.

BACKGROUND: Promoting physical activity, such as habitual walking behaviors, in people with cognitive impairment may support their ability to remain independent with a good quality of life for longer. However, people with cognitive impairment participate in less physical activity compared to cognitively unimpaired older adults. The local area in which people live may significantly impact abilities to participate in physical activity. For example, people who live in more deprived areas may have less safe and walkable routes. OBJECTIVE: To examine this further, this study aimed to explore associations between local area deprivation and physical activity in people with cognitive impairment and cognitively unimpaired older adults (controls). METHODS: 87 participants with cognitive impairment (mild cognitive impairment or dementia) and 27 older adult controls from the North East of England were included in this analysis. Participants wore a tri-axial wearable accelerometer (AX3, Axivity) on their lower backs continuously for seven days. The primary physical activity outcome was daily step count. Individuals' neighborhoods were linked to UK government area deprivation statistics. Hierarchical Bayesian models assessed the association between local area deprivation and daily step count in people with cognitive impairment and controls. RESULTS: Key findings indicated that there was no association between local area deprivation and daily step count in people with cognitive impairment, but higher deprivation was associated with lower daily steps for controls. CONCLUSION: These findings suggest that cognitive impairment may be associated with lower participation in physical activity which supersedes the influence of local area deprivation observed in normal aging.

Is polypharmacy associated with difficulty taking medicines in people aged ≥85 living at home? Findings from the Newcastle 85+ Study.

It is unclear whether polypharmacy is associated with difficulty taking medications amongst people aged ≥85 living at home. This is despite the projected decline in availability of family carers, who may support independent living. Using Newcastle 85+ Study data and mixed-effects modelling, we investigated the association between polypharmacy and difficulty taking medications amongst 85-year-olds living at home, over a 10-year time period. Polypharmacy was not associated with difficulty taking medications as either a continuous (OR = 0.99 [0.91-1.08]) or categorical variable (5-9 medications, OR = 0.69 [0.34-1.41]; ≥10 medications, OR = 0.85 [0.34-2.07]). The significant predictors included disability, visual impairment and cognitive impairment. Our results suggest that people aged ≥85 living at home with disability, visual impairment and/or cognitive impairment will have difficulty taking their medications, regardless of how many they are prescribed. Therefore, healthcare professionals should routinely ask about, assess and address problems that these patient groups may have with taking their medicines, independent of the number of drugs taken.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants' rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

The Role of a Composite Fitness Score in the Association Between Low-Density Cholesterol and All-Cause Mortality in Older Adults: An Individual Patient Data Meta-Analysis.

BACKGROUND: In the general population, an increase in low-density lipoprotein cholesterol (LDL-C) predicts higher cardiovascular disease risk, and lowering LDL-C can prevent cardiovascular disease and reduces mortality risk. Interestingly, in cohort studies that include very old populations, no or inverse associations between LDL-C and mortality have been observed. This study aims to investigate whether the association between LDL-C and mortality in the very old is modified by a composite fitness score. METHODS: A 2-stage meta-analysis of individual participant data from the 5 observational cohort studies. The composite fitness score was operationalized by performance on a combination of 4 markers: functional ability, cognitive function, grip strength, and morbidity. We pooled hazard ratios (HR) from Cox proportional-hazards models for 5-year mortality risk for a 1 mmol/L increase in LDL-C. Models were stratified by high/low composite fitness score. RESULTS: Composite fitness scores were calculated for 2 317 participants (median 85 years, 60% females participants), of which 994 (42.9%) had a high composite fitness score, and 694 (30.0%) had a low-composite fitness score. There was an inverse association between LDL-C and 5-year mortality risk (HR 0.87 [95% CI: 0.80-0.94]; p < .01), most pronounced in participants with a low-composite fitness score (HR 0.85 [95% CI: 0.75-0.96]; p = .01), compared to those with a high composite fitness score (HR = 0.98 [95% CI: 0.83-1.15]; p = .78), the test for subgroups differences was not significant. CONCLUSIONS: In this very old population, there was an inverse association between LDL-C and all-cause mortality, which was most pronounced in participants with a low-composite fitness scores.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Improving primary care based post-diagnostic support for people living with dementia and carers: Developing a complex intervention using the Theory of Change.

BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.

Using Digital Technology to Quantify Habitual Physical Activity in Community Dwellers With Cognitive Impairment: Systematic Review.

BACKGROUND: Participating in habitual physical activity (HPA) can support people with dementia and mild cognitive impairment (MCI) to maintain functional independence. Digital technology can continuously measure HPA objectively, capturing nuanced measures relating to its volume, intensity, pattern, and variability. OBJECTIVE: To understand HPA participation in people with cognitive impairment, this systematic review aims to (1) identify digital methods and protocols; (2) identify metrics used to assess HPA; (3) describe differences in HPA between people with dementia, MCI, and controls; and (4) make recommendations for measuring and reporting HPA in people with cognitive impairment. METHODS: Key search terms were input into 6 databases: Scopus, Web of Science, Psych Articles, PsychInfo, MEDLINE, and Embase. Articles were included if they included community dwellers with dementia or MCI, reported HPA metrics derived from digital technology, were published in English, and were peer reviewed. Articles were excluded if they considered populations without dementia or MCI diagnoses, were based in aged care settings, did not concern digitally derived HPA metrics, or were only concerned with physical activity interventions. Key outcomes extracted included the methods and metrics used to assess HPA and differences in HPA outcomes across the cognitive spectrum. Data were synthesized narratively. An adapted version of the National Institute of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies was used to assess the quality of articles. Due to significant heterogeneity, a meta-analysis was not feasible. RESULTS: A total of 3394 titles were identified, with 33 articles included following the systematic review. The quality assessment suggested that studies were moderate-to-good quality. Accelerometers worn on the wrist or lower back were the most prevalent methods, while metrics relating to volume (eg, daily steps) were most common for measuring HPA. People with dementia had lower volumes, intensities, and variability with different daytime patterns of HPA than controls. Findings in people with MCI varied, but they demonstrated different patterns of HPA compared to controls. CONCLUSIONS: This review highlights limitations in the current literature, including lack of standardization in methods, protocols, and metrics; limited information on validity and acceptability of methods; lack of longitudinal research; and limited associations between HPA metrics and clinically meaningful outcomes. Limitations of this review include the exclusion of functional physical activity metrics (eg, sitting/standing) and non-English articles. Recommendations from this review include suggestions for measuring and reporting HPA in people with cognitive impairment and for future research including validation of methods, development of a core set of clinically meaningful HPA outcomes, and further investigation of socioecological factors that may influence HPA participation. TRIAL REGISTRATION: PROSPERO CRD42020216744; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=216744 .

Longitudinal realist evaluation of the Dementia PersonAlised Care Team (D-PACT) intervention: protocol.

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.

Preparing for end-of-life: learning from Do Not Attempt Cardiopulmonary Resuscitation decision-making during COVID-19.

During the COVID-19 pandemic, Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions were made differently. This included more prominent roles for specialties such as psychiatry and doctors in training. Concerns about inappropriate DNAR decisions led to anxiety for doctors, patients and the public. Positive outcomes may have included earlier and better-quality end-of life-discussions. However, COVID-19 exposed the need for support, training and guidance in this area for all doctors. It also highlighted the importance of effective public education about advanced care planning.