Attitudes to long-term care in India: A secondary, mixed methods analysis.

OBJECTIVES: In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India. METHODS: We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households. RESULTS: We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas. CONCLUSIONS: Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.

The impact of elder abuse training on subacute health providers and older adults: study protocol for a randomized control trial.

BACKGROUND: Elder abuse often goes unreported and undetected. Older people may be ashamed, fearful, or otherwise reticent to disclose abuse, and many health providers are not confident in asking about it. In the No More Shame study, we will evaluate a co-designed, multi-component intervention that aims to improve health providers' recognition, response, and referral of elder abuse. METHODS: This is a single-blinded, pragmatic, cluster randomised controlled trial. Ten subacute hospital sites (i.e. clusters) across Australia will be allocated 1:1, stratified by state to a multi-component intervention comprising a training programme for health providers, implementation of a screening tool and use of site champions, or no additional training or support. Outcomes will be collected at baseline, 4 and 9 months. Our co-primary outcomes are change in health providers' knowledge of responding to elder abuse and older people's sense of safety and quality of life. We will include all inpatients at participating sites, aged 65 + (or aged 50 + if Aboriginal or Torres Strait Islander), who are able to provide informed consent and all unit staff who provide direct care to older people; a sample size of at least 92 health providers and 612 older people will provide sufficient power for primary analyses. DISCUSSION: This will be one of the first trials in the world to evaluate a multi-component elder abuse intervention. If successful, it will provide the most robust evidence base to date for health providers to draw on to create a safe environment for reporting, response, and referral. TRIAL REGISTRATION: ANZCTR, ACTRN12623000676617p . Registered 22 June 2023.

A process evaluation of the NIDUS-Professional dementia training intervention for UK homecare workers.

INTRODUCTION: This process evaluation was conducted in parallel to the randomised controlled feasibility trial of NIDUS-Professional, a manualised remote dementia training intervention for homecare workers (HCWs), delivered alongside an individualised intervention for clients living with dementia and their family carers (NIDUS-Family). The process evaluation reports on: (i) intervention reach, dose and fidelity; (ii) contexts influencing agency engagement and (iii) alignment of findings with theoretical assumptions about how the intervention might produce change. METHODS: We report proportions of eligible HCWs receiving any intervention (reach), number of sessions attended (dose; attending ≥4/6 main sessions was predefined as adhering), intervention fidelity and adherence of clients and carers to NIDUS-Family (attending all 6-8 planned sessions). We interviewed HCWs, managers, family carers and facilitators. We integrated and thematically analysed, at the homecare agency level, qualitative interview and intervention recording data. RESULTS: 32/141 (23%) of eligible HCWs and 7/42 (17%) of family carers received any intervention; most who did adhered to the intervention (89% and 71%). Intervention fidelity was high. We analysed interviews with 20/44 HCWs, 3/4 managers and 3/7 family carers, as well as intervention recordings involving 32/44 HCWs. All agencies reported structural challenges in supporting intervention delivery. Agencies with greater management buy-in had higher dose and reach. HCWs valued NIDUS-Professional for enabling group reflection and peer support, providing practical, actionable care strategies and increasing their confidence as practitioners. CONCLUSION: NIDUS-Professional was valued by HCWs. Agency management, culture and priorities were key barriers to implementation; we discuss how to address these in a future trial.

Population density and receipt of care for common mental disorders: a cross-sectional analysis of English household data from the 2014 Adult Psychiatric Morbidity Survey.

OBJECTIVES: People living in less urban areas in the UK may have reduced access to mental healthcare compared with people in urban areas. Although this was not reported in the 2000 Adult Psychiatric Morbidity Survey (APMS) data, subsequent changes to mental health provision and economic recession may have impacted care inequalities. We re-examined this, hypothesising that those living in less urban areas of England received less antidepressant medication and psychological interventions, compared with those living in urban areas, after adjusting for covariates including common mental disorders (CMDs) and socioeconomic status. DESIGN: National cross-sectional study. SETTING: Households in England. PARTICIPANTS: We analysed data from 7455 participants aged 16 and above from the 2014 English APMS. EXPOSURES: Residence in an urban or less urban area. PRIMARY OUTCOME: Current receipt of any antidepressant medication or any psychological intervention. RESULTS: Participants living in less urban areas were half as likely to be in receipt of any psychological intervention relative to those living in urban areas (adjusted OR (aOR) 0.49; 95% CI 0.30 to 0.79; p=0.004). There was no association between urbanisation and antidepressant receipt (aOR 1.01; 95% CI 0.81 to 1.25; p=0.944). CONCLUSION: People living in less urban areas have a lower likelihood of being in receipt of psychological treatment for CMDs, which may indicate barriers to care access. Our findings differ from the results of a study using a comparable sample conducted 14 years previously. While Improving Access to Psychological Therapies services have increased therapy access nationwide, this may have had more impact in urban areas, potentially widening urban/rural inequalities. Further research is needed to understand how to address such geographical inequalities in access to mental healthcare.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

An exploration of how specialist dementia nurses perceive and maintain the skills and competencies that frame their specialism: A qualitative survey.

Background: UK policy for complex and long-term health conditions including dementia has recommended that specialist nursing intervention is offered across the trajectory of the condition, but there is a lack of agreement regarding the skills and competencies that specialist nurses are expected to possess. Admiral Nurses are the largest UK group of specialist dementia nurses. Objective: To explore how Admiral Nurses met and were supported to meet competencies as defined in the Admiral Nurse Competency Framework, and to develop and maintain skills as dementia specialists. Design: Cross-sectional, semi-structured survey. Setting: Online national survey. Participants: Admiral (specialist dementia) Nurses. Methods: We co-designed our survey with Admiral Nurses; then invited Admiral Nurses to complete it in 2022-23 Data were analysed thematically. Results: 68 (20% of all Admiral Nurses) completed the survey; most were female (85.2%), from a white ethnic group (88.2%); they reported on average 24 years of nursing experience. We identified three themes in responses: 1.Having time and skills for meaningful support, explored how participants were resourced with time and skills to understand and address family carer client needs by active listening, tailoring person-centred support, and "walking alongside" families. 2.Partnering family carers, concerned how they co-designed interventions with family carers, learning from these collaborative partnerships where expertise was shared. 3.Practice and peer-based learning, explored how participants took responsibility for using available training, peer learning and self-reflection to develop their practice. Conclusions: Admiral Nurse roles enabled respondents to develop as autonomous practitioners and to access resources that supported them to build and sustain their dementia specialist practice. Learning was practice based, through partnerships with family carer clients, peer support and self-directed learning. Specialist nursing models may help address the global health workforce emergency, through enabling creative practice development and valued roles that support retention of experienced nurses.

Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial.

INTRODUCTION: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. METHODS: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). RESULTS: From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. CONCLUSION: A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms.

Association Between Dementia, Change in Home-Care Use, and Depressive Symptoms During the COVID-19 Pandemic: A Longitudinal Study Using Data from Three Cohort Studies.

Background: The emotional impact of the coronavirus disease 2019 (COVID-19) pandemic on people with dementia has been quantified. However, little is known about the impact of change in home-care use owing to the pandemic. Objective: To determine the longitudinal association between dementia, change in home-care use, and depressive symptoms during the pandemic. Methods: We included data of 43,782 home-dwelling older adults from the English Longitudinal Study of Ageing (ELSA), Study of Health, Ageing and Retirement in Europe (SHARE), and National Health and Aging Trends Study (NHATS). This study considered the latest main wave survey prior to the pandemic as the baseline, and the COVID-19 survey as follow-up. In a series of coordinated analyses, multilevel binomial logistic regression model was used to examine the association between baseline dementia, change in home-care use at follow-up, and presence of depressive symptoms. Results: Dementia, using the ELSA, SHARE, and NHATS datasets, was identified in 2.9%, 2.3%, and 6.5% of older adults, and home-care use reduced in 1.7%, 2.8%, and 1.1% of individuals with dementia, respectively. Dementia was significantly associated with the increased risk of depressive symptoms in all three cohorts. However, the interaction between dementia and period (follow-up) was non-significant in SHARE and NHATS. Across all three cohorts, home-care use during the pandemic, regardless of change in amount, was significantly associated with increased depressive symptoms, compared to the non-use of home care. Conclusions: These results highlight the need for tailoring dementia care at home to promote independence and provide sustainable emotional support.

Exploring the co-occurrence of depression, anxiety and insomnia symptoms, diagnoses and treatments in primary care: observational study using UK primary care data.

BACKGROUND: Depression, anxiety and insomnia often co-occur. However, there is a lack of research regarding how they cluster and how this is related to medication used to treat them. AIMS: To describe the frequencies and associations between depression, anxiety and insomnia, and treatment for these conditions in primary care. METHOD: A retrospective cohort study using UK electronic primary care records. We included individuals aged between 18 and 99 years old with one or more records suggesting they had a diagnosis, symptom or drug treatment for anxiety, depression or insomnia between 2015 and 2017. We report the conditional probabilities of having different combinations of diagnoses, symptoms and treatments recorded. RESULTS: There were 1 325 960 records indicative of depression, anxiety or insomnia, for 739 834 individuals. Depression was the most common condition (n = 106 117 records), and SSRIs were the most commonly prescribed medication (n = 347 751 records). Overall, individuals with a record of anxiety were most likely to have co-occurring symptoms and diagnoses of other mental health conditions. For example, of the individuals with a record of generalised anxiety disorder (GAD), 24% also had a diagnosis of depression. In contrast, only 0.6% of those who had a diagnosis of depression had a diagnosis or symptom of GAD. Prescribing of more than one psychotropic medication within the same year was common. For example, of those who were prescribed an SNRI (serotonin-norepinephrine reuptake inhibitor), 40% were also prescribed an SSRI (selective serotonin reuptake inhibitor). CONCLUSIONS: The conditional probabilities of co-occurring anxiety, depression and insomnia symptoms, diagnoses and treatments are high.

A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial.

BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.

Predictors of primary care psychological therapy outcomes for depression and anxiety in people living with dementia: evidence from national healthcare records in England.

BACKGROUND: Psychological therapies can be effective in reducing symptoms of depression and anxiety in people living with dementia (PLWD). However, factors associated with better therapy outcomes in PLWD are currently unknown. AIMS: To investigate whether dementia-specific and non-dementia-specific factors are associated with therapy outcomes in PLWD. METHOD: National linked healthcare records were used to identify 1522 PLWD who attended psychological therapy services across England. Associations between various factors and therapy outcomes were explored. RESULTS: People with frontotemporal dementia were more likely to experience reliable deterioration in depression/anxiety symptoms compared with people with vascular dementia (odds ratio 2.98, 95% CI 1.08-8.22; P = 0.03) or Alzheimer's disease (odds ratio 2.95, 95% CI 1.15-7.55; P = 0.03). Greater depression severity (reliable recovery: odds ratio 0.95, 95% CI 0.92-0.98, P < 0.001; reliable deterioration: odds ratio 1.73, 95% CI 1.04-2.90, P = 0.04), lower work and social functioning (recovery: odds ratio 0.98, 95% CI 0.96-0.99, P = 0.002), psychotropic medication use (recovery: odds ratio 0.67, 95% CI 0.51-0.90, P = 0.01), being of working age (recovery: odds ratio 2.03, 95% CI 1.10-3.73, P = 0.02) and fewer therapy sessions (recovery: odds ratio 1.12, 95% CI 1.09-1.16, P < 0.001) were associated with worse therapy outcomes in PLWD. CONCLUSIONS: Dementia type was generally not associated with outcomes, whereas clinical factors were consistent with those identified for the general population. Additional support and adaptations may be required to improve therapy outcomes in PLWD, particularly in those who are younger and have more severe depression.

How might secondary dementia prevention programs work in practice: a pre-implementation study of the APPLE-Tree program.

BACKGROUND: Over 850,000 people in the UK currently have dementia, and that number is expected to grow rapidly. One approach that may help slow or prevent this growth is personalized dementia prevention. For most people, this will involve targeted lifestyle changes. These approaches have shown promise in trials, but as of yet, the evidence for how to scale them to a population level is lacking. In this pre-implementation study, we aimed to explore stakeholder perspectives on developing system-readiness for dementia prevention programs. We focused on the APPLE-Tree program, one of several low-intensity, lifestyle-based dementia prevention interventions currently in clinical trials. METHODS: We conducted semi-structured interviews with health and social care professionals without previous experience with the APPLE-Tree program, who had direct care or managerial experience in services for older adults with memory concerns, without a dementia diagnosis. We used the Consolidated Framework for Implementation Research to guide interviews and thematic analysis. RESULTS: We interviewed 26 stakeholders: commissioners and service managers (n = 15) and frontline workers (n = 11) from eight NHS and 11 third sector organizations throughout England. We identified three main themes: (1) favorable beliefs in the effectiveness of dementia prevention programs in enhancing cognition and wellbeing and their potential to fill a service gap for people with memory concerns, (2) challenges related to funding and capacity to deliver such programs at organizations without staff capacity or higher prioritization of dementia services, and (3) modifications to delivery and guidance required for compatibility with organizations and patients. CONCLUSION: This study highlights likely challenges in scale-up if we are to make personalized dementia prevention widely available. This will only be possible with increased funding of dementia prevention activities; integrated care systems, with their focus on prevention, may enable this. Scale-up of dementia prevention programs will also require clear outlines of their core and adaptable components to fit funding, patient, and facilitator needs.

Estimating life expectancy and years of life lost for autistic people in the UK: a matched cohort study.

Background: Previous research has shown that people who have been diagnosed autistic are more likely to die prematurely than the general population. However, statistics on premature mortality in autistic people have often been misinterpreted. In this study we aimed to estimate the life expectancy and years of life lost experienced by autistic people living in the UK. Methods: We studied people in the IQVIA Medical Research Database with an autism diagnosis between January 1, 1989 and January 16, 2019. For each participant diagnosed autistic, we included ten comparison participants without an autism diagnosis, matched by age, sex, and primary care practice. We calculated age- and sex-standardised mortality ratios comparing people diagnosed autistic to the reference group. We used Poisson regression to estimate age-specific mortality rates, and life tables to estimate life expectancy at age 18 and years of life lost. We analysed the data separately by sex, and for people with and without a record of intellectual disability. We discuss the findings in the light of the prevalence of recorded diagnosis of autism in primary care compared to community estimates. Findings: From a cohort of nearly 10 million people, we identified 17,130 participants diagnosed autistic without an intellectual disability (matched with 171,300 comparison participants), and 6450 participants diagnosed autistic with an intellectual disability (matched with 64,500 comparison participants). The apparent estimates indicated that people diagnosed with autism but not intellectual disability had 1.71 (95% CI: 1.39-2.11) times the mortality rate of people without these diagnoses. People diagnosed with autism and intellectual disability had 2.83 (95% CI: 2.33-3.43) times the mortality rate of people without these diagnoses. Likewise, the apparent reduction in life expectancy for people diagnosed with autism but not intellectual disability was 6.14 years (95% CI: 2.84-9.07) for men and 6.45 years (95% CI: 1.37-11.58 years) for women. The apparent reduction in life expectancy for people diagnosed with autism and intellectual disability was 7.28 years (95% CI: 3.78-10.27) for men and 14.59 years (95% CI: 9.45-19.02 years) for women. However, these findings are likely to be subject to exposure misclassification biases: very few autistic adults and older-adults have been diagnosed, meaning that we could only study a fraction of the total autistic population. Those who have been diagnosed may well be those with greater support needs and more co-occurring health conditions than autistic people on average. Interpretation: The findings indicate that there is a group of autistic people who experience premature mortality, which is of significant concern. There is an urgent need for investigation into the reasons behind this. However, our estimates suggest that the widely reported statistic that autistic people live 16-years less on average is likely incorrect. Nine out of 10 autistic people may have been undiagnosed across the time-period studied. Hence, the results of our study do not generalise to all autistic people. Diagnosed autistic adults, and particularly older adults, are likely those with greater-than-average support needs. Therefore, we may have over-estimated the reduction in life expectancy experienced by autistic people on average. The larger reduction in life expectancy for women diagnosed with autism and intellectual disability vs. men may in part reflect disproportionate underdiagnosis of autism and/or intellectual disability in women. Funding: Dunhill Medical Trust, Medical Research Council, National Institute for Health and Care Research, and the Royal College of Psychiatrists.

Setting individualised goals for people living with dementia and their family carers: A systematic review of goal-setting outcome measures and their psychometric properties.

BACKGROUND: Individualised goal-setting outcome measures can be a useful way of reflecting people living with dementia and family carers' differing priorities regarding quality-of-life domains in the highly heterogeneous symptomatology of the disease. Evaluating goal-setting measures is challenging, and there is limited evidence for their psychometric properties. AIM: (1) To describe what goal-setting outcomes have been used in this population; (2) To evaluate their validity, reliability, and feasibility in RCTs. METHOD: We systematically reviewed studies that utilised goal-setting outcome measures for people living dementia or their family carers. We adapted a risk of bias and quality rating system based on the COSMIN guidelines to evaluate the measurement properties of outcomes when used within RCTs. RESULTS: Thirty studies meeting inclusion criteria used four different goal-setting outcome measures: Goal Attainment Scaling (GAS), Bangor Goal Setting Interview (BGSI), Canadian Occupational Performance Measure (COPM) and Individually Prioritized Problems Assessment (IPPA); other papers have reported study-specific goal-setting attainment systems. Only GAS has been used as an outcome over periods greater than 9 months (up to a year). Within RCTs there was moderate quality evidence for sufficient content validity and construct validity for GAS, COPM and the BGSI. Reliability was only assessed in one RCT (using BGSI); in which two raters reviewed interview transcripts to rate goals with excellent inter-rater reliability. Feasibility was reported as good across the measures with a low level of missing data. CONCLUSION: We found moderate quality evidence for good content and construct validity and feasibility of GAS, BGSI and COPM. While more evidence of reliability of these measures is needed, we recommend that future trials consider using individualised goal setting measures, to report the effect of interventions on outcomes that are most meaningful to people living with dementia and their families.

Clinical effectiveness of pharmacological and non-pharmacological treatments for the management of anxiety in community dwelling people living with dementia: A systematic review and meta-analysis.

People living with dementia commonly experience anxiety, which is often challenging to manage. We investigated the effectiveness of treatments for the management of anxiety in this population. We conducted a systematic review and meta-analysis of randomised controlled trials, and searched EMBASE, CINAHL, MEDLINE and PsycInfo. We estimated standardised mean differences at follow-up between treatments relative to control groups and pooled these across studies using random-effects models where feasible. Thirty-one studies were identified. Meta-analysis demonstrated non-pharmacological interventions were effective in reducing anxiety in people living with dementia, compared to care as usual or active controls. Specifically, music therapy (SMD-1.92(CI:-2.58,-1.25)), muscular approaches (SMD-0.65(CI:-1.02,-0.28)) and stimulating cognitive and physical activities (SMD-0.31(CI:-0.53,-0.09)). Pharmacological interventions with evidence of potential effectiveness included Ginkgo biloba, probiotics, olanzapine, loxapine and citalopram compared to placebo, olanzapine compared to bromazepam and buspirone and risperidone compared to haloperidol. Meta-analyses were not performed for pharmacological interventions due to studies' heterogeneity. This has practice implications when promoting the use of more non-pharmacological interventions to help reduce anxiety among people living with dementia.

Lived experience codesign of self-harm interventions: a scoping review.

OBJECTIVES: This study aims to map existing literature describing how people with lived experience of self-harm have engaged in codesigning self-harm interventions, understand barriers and facilitators to this engagement, and how the meaningfulness of codesign has been evaluated. DESIGN: Scoping review by Joanna Briggs Institute methodology. A protocol was published online (http://dx.doi.org/10.17605/OSF.IO/P52UD). DATA SOURCES: PubMed, Embase, PsycINFO, Web of Science, Cochrane Library, PROSPERO, ClinicalTrials.gov and relevant websites were searched on 24 December 2022 (repeated 4 November 2023). ELIGIBILITY CRITERIA: We included studies where individuals with lived experience of self-harm (first-hand or caregiver) have codesigned self-harm interventions. DATA EXTRACTION AND SYNTHESIS: Results were screened at title and abstract level, then full-text level by two researchers independently. Prespecified data were extracted, charted and sorted into themes. RESULTS: We included 22 codesigned interventions across mobile health, educational settings, prisons and emergency departments. Involvement varied from designing content to multistage involvement in planning, delivery and dissemination. Included papers described the contribution of 159 female, 39 male and 21 transgender or gender diverse codesigners. Few studies included contributors from a minoritised ethnic or LGBTQIA+ group. Six studies evaluated how meaningfully people with lived experience were engaged in codesign: by documenting the impact of contributions on intervention design or through postdesign reflections. Barriers included difficulties recruiting inclusively, making time for meaningful engagement in stretched services and safeguarding concerns for codesigners. Explicit processes for ensuring safety and well-being, flexible schedules, and adequate funding facilitated codesign. CONCLUSIONS: To realise the potential of codesign to improve self-harm interventions, people with lived experience must be representative of those who use services. This requires processes that reassure potential contributors and referrers that codesigners will be safeguarded, remunerated, and their contributions used and valued.

Attitudes to long-term care in India: a secondary mixed-methods analysis.

BACKGROUND: India is the world's most populous country, and overseas Indians the world's largest diaspora. Many of the more than 1·4 million UK-based Indians will be providing care at a distance for parents living in India. Globalisation has contributed to a shift in India from traditional joint family systems to more nuclear structures. We investigated how commonly Indian parents consider and use long-term care facilities and attitudes to their use. METHODS: We did a secondary mixed-methods statistical analysis of the LASI (Longitudinal Ageing Study in India), a national, cross-sectional household survey administered in 2017-18 to 73 396 randomly selected adults aged 45 years and older in all Indian states and Union Territories (42 261 [58%] women, 31 135 [42%] men). We report the proportion and sociodemographic predictors of respondents' parent(s) living in a care home. We also did a secondary thematic analysis of the qualitative interviews from the Moving Pictures India Study, exploring attitudes to long-term care in 2022. These interviews included 19 carers (nine [47%] women; age range 31-79 years) for people with dementia and 25 professionals (19 [76%] women; age range 24-56 years) purposively selected for diversity from networks of the team based at a Bangalore hospital, India. FINDINGS: 24 LASI participants reported that their parent was living in a long-term care facility (father [n=8], mother [n=15], both parents [n=1]). Although rare overall, use and consideration of use of long-term care were more frequently reported in urban areas (n=14, 58%), by people in middle-income quintiles (n=17, 71%) with higher levels of education (n=7, 29%), who rated their health as good or very good (n=15, 63%). The themes identified in qualitative interviews were the use of long-term care facilities as a last resort, social expectations, and limited availability of long-term care facilities. INTERPRETATION: Although interviews were only conducted in Bangalore and respondents could misrepresent living arrangements due to ongoing societal stigma, the data show that very few people reside in old age homes across India, with strong preference towards intergenerational and community care. With the UK home to a growing diaspora of nuclear Indian families, our findings illustrate the contexts in which they provide care at a distance, navigating cross-cultural attitudes and social norms around long-term care. FUNDING: Alzheimer's Association US.

Enabling health and maintaining independence for older people at home (HomeHealth trial): a multicentre randomised controlled trial.

BACKGROUND: NHS frailty services commonly target more severely frail older people, despite evidence suggesting frailty can be prevented or reversed when addressed at an earlier stage. HomeHealth is a new home-based, manualised voluntary sector service supporting older people with mild frailty to maintain their independence through behaviour change. Over six appointments, a trained HomeHealth worker discusses what matters to the older person and supports them to set and achieve goals around mobility, nutrition, socialising and/or psychological wellbeing. The service showed promising effects in a feasibility trial. We aimed to test the clinical and cost-effectiveness of HomeHealth for maintaining independence in older people with mild frailty compared with treatment as usual. METHODS: In this single-blind multicentre randomised controlled trial, we recruited community-dwelling older people aged 65 years or older with mild frailty from 27 general practices, community groups and sheltered housing in London, Yorkshire, and Hertfordshire. Participants were randomly assigned (1:1) to receive either HomeHealth monthly for 6 months or treatment as usual (usual GP and outpatient care, no specific frailty services). Our primary outcome was independence in activities of daily living, measured by blinded outcome assessors using the modified Barthel Index, and analysed using linear mixed models, including 6-month and 12-month data and controlling for baseline Barthel score and site. The study was approved by the Social Care Research Ethics Committee, and all participants provided written or orally recorded informed consent. This study is registered with the ISRCTN registry, ISRCTN54268283. FINDINGS: This trial took place between Jan 18, 2021, and July 4, 2023. We recruited 388 participants (mean age 81·4 years; 64% female [n=250], 94% White British/European [n=364], 2·5% Asian [n=10], 1·5% Black [n=6], 2·0% other [n=8]). We achieved high retention for 6-month follow-up (89%, 345/388), 12-month follow-up (86%, 334/388), and medical notes data (89%, 347/388). 182 (93%) of 195 participants in the intervention group completed the intervention, attending a mean of 5·6 appointments. HomeHealth had no effect on Barthel Index scores at 12 months (mean difference 0·250, 95% CI -0·932 to 1·432). At 6 months, there was a small reduction in psychological distress (-1·237, -2·127 to -0·348) and frailty (-0·124, -0·232 to -0·017), and at 12 months, we found small positive effects on wellbeing (1·449, 0·124 to 2·775) in those receiving HomeHealth. Other outcomes in analysis to date showed no significant difference. Health economic outcomes (including quality of life, capability, health services use and care needs or burden) are pending. INTERPRETATION: This high-quality trial showed that HomeHealth did not maintain independence in older people with mild frailty, and had limited effects upon secondary outcomes. Future studies need to explore different ways to promote health in this population. FUNDING: National Institute for Health and Care Research Health Technology Assessment (NIHR HTA).