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Background: Sleep disturbances are common and distressing for people with dementia and their families. Non-pharmacological interventions should be first-line management, avoiding harmful pharmacological side-effects, but there is none with known effectiveness. We aimed to establish whether DREAMS START, a multicomponent intervention, reduced sleep disturbance in people with dementia living at home compared with usual care., Methods: We conducted a phase 3, two-arm, multicentre, parallel-arm, superiority randomised controlled trial with masked outcome assessment, recruiting dyads of people with dementia and sleep disturbance and family carers from community settings. Randomisation to the DREAMS START intervention (plus usual treatment) or usual treatment was conducted at dyadic level, blocked, and stratified by site, with a web-based system assigning allocation. DREAMS START is a six-session, manualised intervention delivered face to face or remotely by non-clinically trained graduates over an approximately 3-month period. The primary outcome was sleep disturbance measured by the Sleep Disorders Inventory (SDI) at 8 months. Analyses were on the intention-to-treat population. This trial is registered with ISRCTN 13072268., Findings: Between Feb 24, 2021, and March 5, 2023, 377 dyads were randomly assigned (1:1), 189 to usual treatment and 188 to intervention. The mean age of participants with dementia was 79·4 years (SD 9·0), and 206 (55%) were women. The mean SDI score at 8 months was lower in the intervention group compared with the usual treatment group (15·16 [SD 12·77], n=159, vs 20·34 [16·67], n=163]; adjusted difference in means -4·70 [95% CI -7·65 to -1·74], p=0·002). 17 (9%) people with dementia in the intervention group and 17 (9%) in the control group died during the trial; the deaths were unrelated to the intervention., Interpretation: To our knowledge, DREAMS START is the first multicomponent intervention to improve the sleep of people living at home with dementia more than usual clinical care. It had sustained effectiveness beyond intervention delivery. The intervention's delivery by non-clinically trained graduates increases the potential for implementation within health services, adding to usual clinical care., Funding: National Institute for Health and Care Research Health Technology Assessment., Competing Interests: Declaration of interests PR reports grants from the National Institute for Health and Care Research (NIHR) Academy (NIHR300844) and NIHR Programme Grants for Applied Research (PGfAR; NIHR200120 and NIHR203670); and support from the University College London (UCL) Hospitals NIHR Biomedical Research Centre. GL reports support from the UCL Hospitals NIHR Biomedical Research Centre, North Thames NIHR Applied Research Collaboration (ID1861414), and as an NIHR Senior Investigator (NIHR201321); and grants from NIHR PGfAR (NIHR202345 and NIHR203670), the Alzheimer’s Association and Brain Canada (ARCOM-22–875327), the Norwegian Research Council (ES637280), and Wellcome (UNS114095 and 00222932/Z/21/Z). JAB reports support from the UCL Hospitals NIHR Biomedical Research Centre. SB reports grants from NIHR, the Canadian Institutes of Health Research, the Economic and Social Research Council, Health Education England, the Engineering and Physical Sciences Research Council, Alzheimer’s Society, and the Alzheimer’s Association; personal fees from Lilly, Boehringer Ingelheim, Axovant, Lundbeck, and Nutricia; non-financial support from Lilly; honoraria for lectures and talks from the Hamad Medical Service; being a trustee of Alzheimer’s Society; and non-executive directorship at the Somerset NHS Foundation Trust. CAE reports grants from NIHR Health Technology Assessment (HTA; 12/87/61 and 16/84/01); NIHR Efficacy and Mechanism Evaluation (NIHR131789); NIHR Oxford Health Biomedical Research Centre (NIHR203316) , and Wellcome. SDK reports grants from NIHR Oxford Health Biomedical Research Centre (NIHR203316), NIHR HTA (12/87/61 and 16/84/01), NIHR Efficacy and Mechanism Evaluation (NIHR131789), NIHR PGfAR (NIHR203667), and Wellcome (226784/Z/22/Z and 227093/Z/23/Z); stock or stock options from Big Health; being Deputy Editor of the Journal of Sleep Research; being on the editorial board of Sleep Medicine Reviews; and non-financial support from Big Health in the form of no-cost access to the digital sleep improvement programme Sleepio, for use in clinical research. MR reports a grant from NIHR Applied Research Collaboration Kent, Surrey and Sussex and Alzheimer’s Research UK; and an honorarium for a presentation on Lewy body dementias for GE HealthCare. HY reports a studentship from Novo Nordisk. All other authors declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background: Only a third of people with dementia receive a diagnosis and post-diagnostic support. An eight session, manualised, modular post-diagnostic support system (New Interventions for Independence in Dementia Study (NIDUS) - family), delivered remotely by non-clinical facilitators is the first scalable intervention to improve personalised goal attainment for people with dementia. It could significantly improve care quality., Aims: We aimed to explore system readiness for NIDUS-family, a scalable, personalised post-diagnostic support intervention., Method: We conducted semi-structured interviews with professionals from dementia care services; the Consolidated Framework for Implementation Research guided interviews and their thematic analysis., Results: From 2022 to 2023, we interviewed a purposive sample of 21 professionals from seven English National Health Service, health and social care services. We identified three themes: (1) potential value of a personalised intervention - interviewees perceived the capacity for choice and supporting person-centred care as relative advantages over existing resources; (2) compatibility and deliverability with existing systems - the NIDUS-family intervention model was perceived as compatible with service goals and clients' needs, but current service infrastructures, financing and commissioning briefs constraining resources to those at greatest need were seen as barriers to providing universal, post-diagnostic care; (3) fit with current workforce skills - the intervention model aligned well with staff development plans; delivery by non-clinically qualified staff was considered an advantage over current care options., Conclusions: Translating evidence for scalable and effective post-diagnostic care into practice will support national policies to widen access to support and upskill support workers, but requires a greater focus on prevention in commissioning briefs and resource planning.

Introduction: We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year., Methods: In 2021-2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data., Results: 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) 'Someone to talk to helps dyads feel supported'; (B) 'NIDUS-Family helps carers change their perspective'; (C) 'Personalisation helps people living with dementia maintain their identity' and (D) 'Small steps help dyads move forward'., Conclusion: Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

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., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

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., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Low health literacy (HL) has been linked to low self-rated health, reduced efficacy of behaviour change, and challenges in preventing, treating, or managing health conditions. People experiencing homelessness are at risk of poor HL; however, few studies have investigated HL in relation to mental and spiritual well-being among people experiencing homelessness in general, or women experiencing homelessness specifically. This cross-sectional study of 46 women experiencing homelessness in Stockholm, Sweden, recruited during the period October 2019-December 2020, aimed to examine how HL was associated with mental and spiritual well-being among women experiencing homelessness. Participants answered questions about socio-demographic characteristics (age, length of homelessness, education) and digital technology (mobile phone/the Internet) use, in addition to Swedish language versions of three questionnaires administered through structured, face-to-face interviews: the Communicative and Critical Health Literacy Scale, the General Health Questionnaire 12 and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. Data were analysed using linear regression, which revealed statistically significant associations between HL and mental well-being (p = .009), and between HL and spiritual well-being (p = .022). However, neither socio-demographic characteristics nor digital technology use were significantly associated with HL. In conclusion, promoting HL may improve mental and spiritual well-being in this vulnerable population. An advisory board of women with lived experiences of homelessness (n = 5) supported the interpretation of the findings and emphasised the need to consider HL in relation to basic needs such as 'housing first'. Moreover, health information and services should be accessible to people with different degrees of HL., (© The Author(s) 2024. Published by Oxford University Press.)

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., (© 2024. The Author(s).)

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., Competing Interests: Declaration of interests KR reports personal fees (primarily for invited guest lectures, rounds, and academic symposia on frailty) from the Burnaby Division Family Practice, McMaster University, Chinese Medical Association, Wake Forest University Medical School Centre (advisory board member), University of Omaha, the Atria Institute, EPI Pharma (data safety monitoring board advisory board member), and Ardea Outcomes, outside the submitted work. All other authors declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives' sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care., Methods and Analysis: We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1-2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation., Ethics and Dissemination: London-Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention., Trial Registration Number: ISRCTN13072268., Competing Interests: Competing interests: The present manuscript is supported by a National Institute for Health and Care Research (NIHR) Health Technology Assessment Programme (HTA) grant (NIHR HTA 128761). SB declares grants from NIHR, CIHR, ESRC, HEE, ESPRC, Alzheimer’s Society, and the Alzheimer’s Association with no COI with current work. CE declares grants from NIHR-HTA, NIHR-EME, NIHR-BRC, Wellcome Trust with no COI with current work. MR declares a grant from NIHR ARC KSS with no COI with current work. Outside the submitted work SK declares non-financial support from Big Health Ltd. in the form of no cost access to the digital sleep improvement programme, Sleepio, for use in clinical research. Outside the submitted work CE declares stock/stock options and other salary contributions from Big Health Limited developers of Sleepio. Outside the submitted work SSB declares personal fees and non-financial support from Lilly, personal fees from Boehringer-Ingelheim, personal fees from Axovant, personal fees from Lundbeck, personal fees from Nutricia and honoraria from the Hamad Medical Service for lectures and talks. Outside the submitted work MR declares Honorarium for presentation on Lewy body dementias for GE. SB is a trustee of the Alzheimer’s Society and NED at the Somerset NHS Foundation Trust. CE is deputy editor of the Journal of Sleep Research and on the editorial board of Sleep Medicine reviews., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 Kouroupa A et al.)

Background: The numbers of older people experiencing both homelessness and memory problems are growing, yet their complex health, housing and care needs remain undelineated and unmet. There is a critical gap in understanding what can improve the care, support and experiences of this group. In this qualitative study we explore how stakeholders understand memory problems among older people in the context of homelessness and consider what they judge gets in the way of achieving positive outcomes., Method: We conducted reflexive thematic analysis of qualitative interviews (n = 49) using a semi-structured topic guide, with 17 older people (aged ≥ 50 years) experiencing memory problems and homelessness, 15 hostel staff and managers, and 17 health, housing and social care practitioners. We recruited participants from six homelessness hostels, one specialist care home and National Health and Local Authority Services in England., Results: We identified four overarching themes. The population is not taken seriously; multiple causes are hard to disentangle; risk of exploitation and vulnerability; and (dis)connection and social isolation. The transience and lack of stability associated with homelessness intensified the disorienting nature of memory and cognitive impairment, and those providing direct and indirect support required flexibility and persistence, with staff moving beyond traditional roles to advocate, provide care and safeguard individuals. Memory problems were perceived by frontline staff and older people to be overlooked, misinterpreted, and misattributed as being caused by alcohol use, resulting in pervasive barriers to achieving positive and desired outcomes., Conclusions: Efforts to meet the needs of older people living with memory problems and experiencing homelessness and future interventions must reflect the complexity of their lives, often in the context of long-term alcohol use and current service provision and we make suggestions as to what could be done to improve the situation., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objectives: Approximately 10% of people with intellectual disability display aggressive challenging behaviour, usually due to unmet needs. There are a variety of interventions available, yet a scarcity of understanding about what mechanisms contribute to successful interventions. We explored how complex interventions for aggressive challenging behaviour work in practice and what works for whom by developing programme theories through contexts-mechanism-outcome configurations., Methods: This review followed modified rapid realist review methodology and RAMESES-II standards. Eligible papers reported on a range of population groups (intellectual disability, mental health, dementia, young people and adults) and settings (community and inpatient) to broaden the scope and available data for review., Results: Five databases and grey literature were searched and a total of 59 studies were included. We developed three overarching domains comprising of 11 contexts-mechanism-outcome configurations; 1. Working with the person displaying aggressive challenging behaviour, 2. Relationships and team focused approaches and 3. Sustaining and embedding facilitating factors at team and systems levels. Mechanisms underlying the successful application of interventions included improving understanding, addressing unmet need, developing positive skills, enhancing carer compassion, and boosting staff self-efficacy and motivation., Conclusion: The review emphasises how interventions for aggressive challenging behaviour should be personalised and tailored to suit individual needs. Effective communication and trusting relationships between service users, carers, professionals, and within staff teams is essential to facilitate effective intervention delivery. Carer inclusion and service level buy-in supports the attainment of desired outcomes. Implications for policy, clinical practice and future directions are discussed., Prospero Registration Number: CRD42020203055., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Royston et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Introduction: Many older people experience memory concerns; a minority receive a diagnosis of Mild Cognitive Impairment (MCI) or Subjective Cognitive decline (SCD). There are concerns that medicalisation of MCI and memory concern may fail to acknowledge subjective experiences., Aim: We explore the meaning individuals give to their memory concerns, with or without a diagnosis of MCI and SCD., Method: We scoped literature exploring subjective experiences of memory concern, with or without a diagnosis of MCI or SCD. We searched CINAHL, PsycINFO and MEDLINE in March 2020, and updated in Sept 2021.We used (Arksey & O'Malley, 2005) framework to guide our scoping review method and thematic analysis to analyse our findings., Results: We screened 12,033 search results reviewing the full texts of 92 papers. We included 24 papers, including a total of 453 participants, the majority of whom were female, from White ethnic majority populations (or from studies where ethnicity was not identified) with high levels of education. In 15 out of 24 studies, 272 participants were diagnosed with MCI. We identified two themes; Making a diagnosis personal and Remembering not to forget . We found that subjective experiences include normative comparison with others of the same age and responses including fear, relief, and acceptance, but culminating in uncertainty., Conclusion: Drawing upon sociology, we highlight the subjective experiences of living with memory concerns, SCD and an MCI diagnosis. We identify a gap between the intended purpose of diagnostic labels to bring understanding and certainty and the lived experiences of those ascribed them.

Objectives: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia., Methods: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies., Results: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention., Conclusions: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

This study aimed to systematically review and meta-analyse the prevalence of sleep disturbances in people with dementia and examine demographic predictors and whether overall prevalence has changed over time. We searched Embase, MEDLINE and PsycINFO for studies reporting the prevalence of sleep disturbances in people with dementia living at home. We meta-analysed the data and calculated the pooled prevalence of sleep disturbances in people with dementia overall and in dementia subtypes. We used meta-regressions to investigate the effects of study characteristics, publication dates and participant demographics. Eleven studies fulfilled the inclusion criteria. The pooled prevalence of any symptoms of sleep disturbance was 26 % (95 % confidence intervals, CI: 23-30 %; n = 2719) and of clinically significant sleep disturbance 19 % (13-25 %; n = 2753). The pooled prevalence of sleep disturbance symptoms was significantly lower among people with Alzheimer's disease (24 %; 16-33 %, n = 310) than Lewy body dementia (49 %; 37-61 %, n = 65). Meta-regression analysis did not find that publication year, participant's age, sex and study quality predicted prevalence. Sleep disturbances are common among people with dementia living in the community, especially in Lewy body dementia. There was no change in prevalence according to publication dates, suggesting treatment has not improved over time., Competing Interests: Declaration of interest None., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)

Introduction: Most people living with dementia want to remain living in their own homes, and are supported to do so by family carers and homecare workers. There are concerns that homecare is often unable to meet the needs of this client group, with limited evidence regarding effective interventions to improve it for people living with dementia. We have developed a training and support programme for homecare workers (NIDUS-Professional) to be delivered alongside support sessions for people living with dementia and their family carers (NIDUS-Family). We aim to assess (1) its acceptability among homecare workers and employing agencies, and (2) the feasibility of homecare workers, people living with dementia and their family carers completing the outcomes of intervention in a future randomised controlled trial., Methods and Analysis: This is a cluster-randomised (2:1) single-blind, multisite feasibility trial. We aim to recruit 60-90 homecare workers, 30-60 clients living with dementia and their family carers through 6-9 English homecare agencies. In the intervention arm, homecare staff will be offered six group sessions on video call over three months, followed by monthly group sessions over the subsequent three-month period. Outcome measures will be collected at baseline and at six months., Ethics and Dissemination: The study received ethical approval on 7 January 2020 from the Camden & King's Cross Research Ethics Committee. Study reference: 19/LO/1667. Findings will be disseminated through a peer-reviewed journal, conference presentation and blog to research and clinical audiences; we will attend forums to present findings to participating homecare agencies and their clients., Trial Registration Number: ISRCTN15757555., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed, 6-session dementia training intervention for homecare workers (NIDUS-professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video-calls during Oct 2020-March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3- and 6-months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. In our thematic analysis we report one over-arching theme: 'Having time and space to reflect is a rare opportunity'. Within this we identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which we explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants' lack of clarity about their purpose. We used our findings to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: Apathy is frequent and persistent in Alzheimer's disease (AD), associated with poor prognosis and carer distress; yet our knowledge of risk factors remains limited., Aims: To identify risk factors associated with apathy incidence and progression in AD over time., Methods: We systematically reviewed evidence based on longitudinal studies assessing risk factors for apathy in AD up to June 2021. Two authors independently assessed article eligibility and rated quality., Results: 13,280 articles were screened, of which 13 met inclusion criteria. Studies had a mean follow-up of 2.7 years reporting on a total of 2012 participants. Most findings were based on single studies of moderate quality evidence. Risk factors increasing apathy onset were: being a carrier of the T allele of the PRND gene polymorphism, and having high levels of the IL-6 and TNFα cytokines at baseline. Risk factors for apathy worsening were: reduced inferior-temporal cortical thickness, taking antidepressants, being an ApoE ε4 carrier, living longer with AD, lower cognitive test scores, higher baseline apathy, premorbid personality traits (lower agreeableness, higher neuroticism), and higher midlife motivational abilities., Conclusions: Although results are limited by the small number of studies, this review identified specific genetic, neurobiological, AD specific, and dispositional factors that may increase risk of apathy onset and worsening in AD., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Large-scale trials of multidomain interventions show that modifying lifestyle and psychological risk factors can slow cognitive decline. We aim to determine if a lower intensity, personally tailored secondary dementia prevention programme for older people with subjective or mild objective memory decline, informed by behaviour change theory, reduces cognitive decline over 2 years., Methods: A multi-site, single-blind randomised controlled trial recruiting 704 older adults at high dementia risk due to mild cognitive impairment (MCI) or subjective cognitive decline (SCD). Participants are randomised using 1:1 allocation ratio to the APPLE Tree intervention versus control arm (dementia prevention information), stratified by site. The intervention explores and implements strategies to promote healthy lifestyle, increase pleasurable activities and social connections and improve long-term condition self-management. Two facilitators trained and supervised by a clinical psychologist deliver ten, 1-h group video call sessions over 6 months (approximately every fortnight), video-call 'tea breaks' (less structured, facilitated social sessions) in intervening weeks and individual goal-setting phone calls every 2 weeks. From 6 to 12 months, participants meet monthly for 'tea breaks', with those not attending receiving monthly goal-setting phone calls. Participants receive a food delivery, pedometer and website access to cognitive training and information about lifestyle modification. Follow-ups for all outcome measures are at 12 and 24 months. The primary outcome is cognition (Neuropsychological Test Battery (NTB) score) at 24 months. Secondary outcomes are quality of life, cost per quality-adjusted life year (QALY) and wellbeing and lifestyle factors the intervention targets (diet, vascular risk, body weight, activity, sleep, anxiety, depression, social networks and loneliness, alcohol intake and smoking). Participants from purposively selected sites participate in qualitative process evaluation interviews, which will be analysed using thematic analytic methods., Discussion: If effective, the intervention design, involving remote delivery and non-clinical facilitators, would facilitate intervention roll-out to older people with memory concerns., Trial Registration: ISRCTN17325135 . Registration date 27 November 2019., (© 2022. The Author(s).)

Introduction: Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia., Methods: We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach., Findings: Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone., Conclusions: Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers' ability to fulfil other roles, such as parental.

Background: The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome., Aim: To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities., Method and Procedures: We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour., Outcomes and Results: We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6)., Conclusions and Implications: The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Background and Objectives: We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme)., Research Design and Methods: Over October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings., Results: Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group., Discussion and Implications: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.

Background: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months., Methods: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator., Discussion: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home., Trial Registration: International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019., (© 2021. The Author(s).)

Purpose: The aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia., Methods: We undertook 100 h of participant observations with homecare workers (n = 16) supporting people living with dementia (n = 17); and 82 qualitative interviews with people living with dementia (n = 11), family carers (n = 22), homecare managers and support staff (n = 11), homecare workers (n = 19) and health and social care professionals (n = 19). We triangulated data and analysed findings thematically., Results: We developed three themes: (1) independence and the home environment, highlighting ongoing negotiations between familiarity, suitability and safety for care; (2) independence and identity, exploring how homecare workers' understanding of their clients' identity can enable active participation in tasks and meaningful choices; and (3) independence and empowerment, considering the important position of homecare workers to advocate for clients living with dementia while navigating authoritative power amongst proxy decision-makers., Conclusion: We consider that person-centred care should also be home-centred, respecting the client's home as an extension of self. Homecare workers can use their understanding of clients' identities, alongside skills in providing choice and developing relationships of interdependence to engage clients in everyday tasks. Homecare workers are well placed to advocate for their client's voice within the care network, although their ability to do so is limited by their position within power structures., (© 2020. The Author(s).)

Background: Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. In this ethnographic study, we explore the skills, training and support needs of homecare workers supporting people living with dementia., Research Design and Methods: We conducted 82 interviews with people living with dementia ( n = 11), family caregivers ( n = 22), homecare staff ( n = 30) and health and social care professionals ( n = 19) and conducted 100-hours of participant observations with homecare workers ( n = 16). We triangulated interview and observational findings and analysed data thematically., Results: We developed four themes: 1) 'Navigating the homecare identity and role': describing challenges of moving between different role identities and managing associated expectations, 2) 'Developing and utilising relational and emotional skills': boundaries between caring and getting emotionally involved felt blurred and difficult to manage, 3) 'Managing clients who resist care': homecare workers experienced clients' reactions as challenging and felt "thrown to the wolves" without sufficient training, and 4) 'Drawing on agency and team support': homecare work could be isolating, with no shared workplace, busy schedules and limited opportunity for peer support., Discussion and Implications: It is important that training and support for homecare workers addresses the relational, emotional and rights-based aspects of the role. Where a flexible, responsive, person-centred service is required, corresponding training and support is needed, alongside organisational practices, taking account of the broader context of the homecare sector.

Background and Objectives: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. We developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants' accounts how the intervention was experienced and used in the pandemic context., Research Design and Method: We recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis., Results: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness . Three sub-themes were as follows: Retaining independence and social connectedness : social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic : participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes., Discussion and Implications: Our intervention was acceptable and feasible to deliver by group video-call. We argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes.

Objectives: The dementia care home workforce receives little specific training. There are successful interventions, improving care outcomes, but it is unclear whether or how to sustain these effects. The Managing Agitation and Raising Quality of Life (MARQUE) intervention aimed to train care home staff to reduce resident agitation and improve quality of life. It was designed for sustainability, with implementation plans agreed with managers. MARQUE improves quality of life. In this separate study, we aimed to examine implementation around 2 years later., Methods and Design: We explored practice change since the intervention and considered current implementation of home-specific action plans, enablers or barriers, and perceived benefits or harms of implementation using semi-structured interviews with staff working in the trial homes who received the MARQUE intervention., Results: Six out of 10 intervention homes participated. We interviewed 25 staff, 20-30 months after the MARQUE study. In all homes, staff reported that at least one MARQUE component was sustained. Three themes emerged about sustained practice change: (i) communication, (ii) respect and understanding of roles, and (iii) ability to try new things. Notable changes included improved team working and feelings of competence, positive attitude to residents rather than blame for agitation and avoidance, and more pleasant activities. Leadership support was important., Conclusions: It is possible to sustain some change over years in care homes. This study indicates factors which help or impede. These factors individually and together could lead to long-term improved quality of life of residents in homes where it is implemented and sustained., (© 2021 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objectives: To examine the feasibility and acceptability of NIDUS-Family, a 6-8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention., Method: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual., Results: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation ( n  = 10); carer wellbeing ( n  = 6), managing physical complaints ( n  = 6); meal preparation/cooking ( n  = 5); and reducing irritability, frustration or aggression ( n  = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia., Conclusion: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer's Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1-5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers' mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0-42). We changed START's format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale., Competing Interests: The following support did not provide specific funding for the study: GL is supported by North Thames National Institute for Health Research (NIHR) Biomedical Research Centre (BRC), NIHR ARC (Applied Research Collaboration) and as a NIHR Senior Investigator. PR is funded by UCLH NIHR BRC and the Alzheimer’s Society, UK. NM is funded by Alzheimer’s Society, UK and supported by UCLH NIHR BRC. AS is funded by the UCL / Wellcome Trust Institutional Strategic Support Fund (204841/Z/16/Z) and supported by UCLH NIHR BRC. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before-after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.

Objectives: Many people live with an awareness of mild cognitive changes that increase their dementia risk. Previous authors describe the uncertainties of this liminal state, between cognitive health and dementia, where being "at risk" can itself be an illness. We ask how services respond to people with memory concerns currently, and how a future, effective and inclusive dementia prevention intervention might be structured for people with memory concerns., Methods/design: We conducted qualitative interviews with 18 people aged 60+ years with subjective or objective memory problems, six family members, 10 health and social care professionals and 11 third sector workers. Interviews were audio-recorded, transcribed and analysed using an inductive thematic approach., Results: Three main themes were identified: (1) acknowledging the liminal state, compounded by current, discordant health service responses: medicalising memory concerns yet situating responsibilities for their management with patients and families; (2) enabling change in challenging contexts of physical and cognitive frailty and social disengagement and (3) building on existing values, cultures and routines., Conclusions: Effective dementia prevention must empower individuals to make lifestyle changes within challenging contexts. Programmes must be evidence based yet sufficiently flexible to allow new activities to be fitted into people's current lives; and mindful of the risks of pathologising memory concerns. Most current memory services are neither commissioned, financially or clinically resourced to support people with memory concerns without dementia. Effective, large scale dementia prevention will require a broad societal response., (© 2020 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objectives: To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers., Design: Secondary thematic analysis of 82 semi-structured interviews., Setting: Community settings across the United Kingdom., Participants: 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff., Results: We identified three overarching themes: (1) The process of substituting self-management : stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia : healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit., Conclusion: The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Background: Observational studies indicate that approximately a third of dementia cases are attributable to modifiable cardiometabolic, physical and mental health, and social and lifestyle risk factors. There is evidence that intensive behaviour change interventions targeting these factors can reduce cognitive decline. [Figure: see text] METHODS AND ANALYSIS: We will design and test a low intensity, secondary dementia-prevention programme (Active Prevention in People at risk of dementia: Lifestyle, bEhaviour change and Technology to REducE cognitive and functional decline, "APPLE-Tree") to slow cognitive decline in people with subjective cognitive decline with or without objective cognitive impairment. We will embed our work within social science research to understand how dementia prevention is currently delivered and structured. We will carry out systematic reviews and around 50 qualitative interviews with stakeholders, using findings to coproduce the APPLE-Tree intervention. We plan a 10-session group intervention, involving personalised goal-setting, with individual sessions for those unable or unwilling to attend groups, delivered by psychology assistants who will be trained and supervised by clinical psychologists. The coproduction group (including public and patient involvement [PPI], academic and clinical/third-sector professional representatives) will use the Behaviour Change Wheel theoretical framework to develop it. We will recruit and randomly allocate 704 participants, 1:1 to the intervention: informational control group. This sample size is sufficient to detect a between-group difference at 2 years of 0.15 on the primary outcome (cognition: modified neuropsychological test battery; 90% power, 5% significance, effect size 0.25, SD 0.6)., Dissemination: We will work with Public Health England and third-sector partners to produce an effective national implementation approach, so that if our intervention works, it is used in practice., (© 2019 John Wiley & Sons Ltd.)

Background and Objectives: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services., Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed., Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks., Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support., (© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this., Methods: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England., Results: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk., Discussion: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

Background: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes., Methods: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews., Results: Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia., Conclusion: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Purpose: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home., Methods: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base., Results: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model., Conclusions: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home., Trial Registration: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

Background: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective., Aims: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission., Method: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission., Results: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35)., Conclusions: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers., Declarations of Interest: G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Background: Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life., Methods: We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as "Very Good, Good, Fair, or Poor." Using thematic analysis, we compared staff and relatives' proxy responses., Results: For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment., Conclusions: Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia., (© 2019 John Wiley & Sons, Ltd.)

The home-care workforce is in high demand globally. Home-care workers provide care for people at home, including practical and personal care, as well as other tasks such as medication management. We conducted a systematic review with the aims of understanding methods of observation that have been employed to study home care and to explore how these methods have enabled researchers to understand the quality of home care. We searched the literature using PubMed and CINAHL databases in May 2018, with no limits applied to date of publication. We searched for MeSH terms of 'Home Care Services', 'Home Health Care', 'Home Nursing' and 'Observation*'. Across 15 eligible studies, the types of observation methods employed were categorised as structured, guided and unstructured. The characteristics of these methods, such as the level of participation adopted by the observer, varied across the studies. Three themes were developed through a narrative synthesis of the included studies' findings: 'The impact of care delivery and organisational factors', 'Observing relationships and communications', and 'People and places behind closed doors'. We conclude that methods of observation are a fairly novel, yet rich and meaningful way of exploring home-care practice. Researchers undertaking observations should consider elements such as the number of researchers observing and the potential for variations, how and when to record the observations, possible triangulation of data, the researcher's reflective stance as an observer, as well as ethical considerations., (© 2019 John Wiley & Sons Ltd.)

Objective: Slowing functional decline could enable people living with dementia to live for longer and more independently in their own homes. We aimed to update previous syntheses examining the effectiveness of nonpharmacological interventions in reducing functional decline (activities of daily living, activity-specific physical functioning, or function-specific goal attainment) in people living in their own homes with dementia., Methods: We systematically searched electronic databases from January 2012 to May 2018; two researchers independently rated risk of bias of randomised controlled trials (RCTs) fitting predetermined inclusion criteria using a checklist; we narratively synthesised findings, prioritising studies judged to have a lower risk of bias., Results: Twenty-nine papers (describing 26 RCTs) met eligibility criteria, of which we judged 13 RCTs to have a lower risk of bias. Study interventions were evaluated in four groups: physical exercise, occupational, multicomponent, and cognition-oriented interventions. Four out of 13 RCTs reported functional ability as a primary outcome. In studies judged to have a lower risk of bias, in-home tailored exercise, individualised cognitive rehabilitation, and in-home activities-focussed occupational therapy significantly reduced functional decline relative to control groups in individual studies. There was consistent evidence from studies at low risk of bias that group-based exercise and reminiscence therapies were ineffective at reducing functional decline., Conclusion: We found no replicated evidence of intervention effectiveness in decreasing functional decline. Interventions associated with slower functional decline in individual trials have been individually delivered and tailored to the needs of the person with dementia. This is consistent with previous findings. Future intervention trials should prioritise these approaches., (© 2019 John Wiley & Sons, Ltd.)

Background: Many people with dementia living in care homes have distressing and costly agitation symptoms. Interventions should be efficacious, scalable, and feasible., Methods: We did a parallel-group, cluster-randomised controlled trial in 20 care homes across England. Care homes were eligible if they had 17 residents or more with dementia, agreed to mandatory training for all eligible staff and the implementation of plans, and more than 60% of eligible staff agreed to participate. Staff were eligible if they worked during the day providing face-to-face care for residents with dementia. Residents were eligible if they had a known dementia diagnosis or scored positive on screening with the Noticeable Problems Checklist. A statistician independent of the study randomised care homes (1:1) to the Managing Agitation and Raising Quality of Life (MARQUE) intervention or treatment as usual (TAU) using computer-generated randomisation in blocks of two, stratified by type of home (residential or nursing). Care home staff were not masked to the intervention but were asked not to inform assessors. Residents with dementia, family carers, outcome assessors, statisticians, and health economists were masked to allocation until the data were analysed. MARQUE is an evidence-based manualised intervention, delivered by supervised graduate psychologists to staff in six interactive sessions. The primary outcome was agitation score at 8 months, measured using the Cohen-Mansfield Agitation Inventory (CMAI). Analysis of the primary outcome was done in the modified intention-to-treat population, which included all randomly assigned residents for whom CMAI data was available at 8 months. Mortality was assessed in all randomly assigned residents. This study is registered with the ISRCTN registry, number ISRCTN96745365., Findings: Between June 14, 2016, and July 4, 2017, we randomised ten care homes (189 residents) to the MARQUE intervention and ten care homes (215 residents) to TAU. At 8 months, primary outcome data were available for 155 residents in the MARQUE group and 163 residents in the TAU group. At 8 months, no significant differences in mean CMAI scores were identified between the MARQUE and TAU groups (adjusted difference -0·40 [95% CI -3·89 to 3·09; p=0·8226]). In the intervention care homes, 84% of all eligible staff completed all sessions. The mean difference in cost between the MARQUE and TAU groups was £204 (-215 to 623; p=0·320) and mean difference in quality-adjusted life-years was 0·015 (95% CI -0·004 to 0·034; p=0·127). At 8 months, 27 (14%) of 189 residents in the MARQUE group and 41 (19%) of 215 residents in the TAU group had died. The prescription of antipsychotic drugs was not significantly different between the MARQUE group and the TAU group (odds ratio 0·66; 95% CI 0·26 to 1·69, p=0·3880)., Interpretation: The MARQUE intervention was not efficacious for agitation although feasible and cost-effective in terms of quality of life. Addressing agitation in care homes might require resourcing for delivery by professional staff of a more intensive intervention, implementing social and activity times, and a longer time to implement change., Funding: UK Economic and Social Research Council and the National Institute of Health Research., (Copyright © 2019 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

ABSTRACTBackground:40% of people with dementia have disturbed sleep but there are currently no known effective treatments. Studies of sleep hygiene and light therapy have not been powered to indicate feasibility and acceptability and have shown 40-50% retention. We tested the feasibility and acceptability of a six-session manualized evidence-based non-pharmacological therapy; Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS-START) for sleep disturbance in people with dementia., Methods: We conducted a parallel, two-armed, single-blind randomized trial and randomized 2:1 to intervention: Treatment as Usual. Eligible participants had dementia and sleep disturbances (scoring ≥4 on one Sleep Disorders Inventory item) and a family carer and were recruited from two London memory services and Join Dementia Research. Participants wore an actiwatch for two weeks pre-randomization. Trained, clinically supervised psychology graduates delivered DREAMS-START to carers randomized to intervention; covering Understanding sleep and dementia; Making a plan (incorporating actiwatch information, light exposure using a light box); Daytime activity and routine; Difficult night-time behaviors; Taking care of your own (carer's) sleep; and What works? Strategies for the future. Carers kept their manual, light box, and relaxation recordings post-intervention. Outcome assessment was masked to allocation. The co-primary outcomes were feasibility (≥50% eligible people consenting to the study) and acceptability (≥75% of intervention group attending ≥4 intervention sessions)., Results: In total, 63out of 95 (66%; 95% CI: 56-76%) eligible referrals consented between 04/08/2016 and 24/03/2017; 62 (65%; 95% CI: 55-75%) were randomized, and 37 out of 42 (88%; 95% CI: 75-96%) adhered to the intervention., Conclusions: DREAM-START for sleep disorders in dementia is feasible and acceptable.

Objectives: The objectives of the study are (1) to test our primary hypothesis that carers using more dysfunctional coping strategies predict lower quality of life in care home residents living with dementia, and this is moderated by levels of resident agitation, and (2) to explore relationships between carer dysfunctional coping strategy use, agitation, quality of life, and resident survival., Methods: In the largest prospective cohort to date, we interviewed carers from 97 care home units (baseline, 4, 8, 12, 16 months) about quality of life (DEMQOL-Proxy) and agitation (Cohen-Mansfield Agitation Inventory) of 1483 residents living with dementia. At baseline, we interviewed 1566 carers about coping strategies (Brief COPE), averaging scores across care home units., Results: Carer dysfunctional coping strategies did not predict resident quality of life over 16 months (0.03, 95% CI -0.40 to 0.46). Lower resident quality of life was longitudinally associated with worse Cohen-Mansfield Agitation Inventory score (-0.25, 95% CI -0.26 to -0.23). Survival was not associated with carer dysfunctional coping, resident quality of life, or agitation scores., Conclusions: Carer dysfunctional coping did not predict resident quality of life. Levels of resident agitation were consistently high and related to lower quality of life, over 16 months. Lack of association between carer dysfunctional coping and resident quality of life may reflect the influence of the care home or an insensitivity of aggregated coping strategy scores. The lack of relationship with survival indicates that agitation is not explained mainly by illness. Scalable interventions to reduce agitation in care home residents living with dementia are urgently needed., (© 2018 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.)

Background: It has been estimated that between 25% and 40% of people living with dementia suffer from sleep disturbances, and there are currently no known effective treatments. Sleep disturbances may be the direct result of dementia or due to other comorbidities, such as pain and limited mobility. If carers' sleep is also disturbed, carers too can become tired and stressed, and this sometimes results in the breakdown of care in the home., Objectives: To design an evidence-based manualised non-pharmacological therapy for sleep disturbances and test it for feasibility and acceptability., Design: A single-blind, randomised, parallel-group feasibility trial, with participants randomised 2 : 1 to intervention or treatment as usual (TAU)., Setting: Five memory services in two London NHS trusts and Join Dementia Research (JDR)., Participants: The study recruited people with dementia and sleep disturbances (who scored ≥ 4 on at least one question on the Sleep Disorders Inventory) and their primary family carers., Intervention: All participants were given an Actiwatch (CamNtech Ltd, Cambridge, UK) to wear to record their sleep patterns for 2 weeks before randomisation. The intervention group received Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS START). This was designed as a six-session, manual-based intervention for carers of people with dementia, delivered by trained and clinically supervised psychology graduates, based on evidence about managing sleep disturbance in people with dementia. It uses the structure of a previous manual-based treatment, STrAtegies for RelaTives (START). Family carers were consulted about structure, content and design. Sessions were interactive, and each involved techniques, tasks to practise between sessions, relaxation and a recapitulation on the previous session. The sessions covered understanding sleep and dementia, making a plan (incorporating information from Actiwatch read-outs and a light box to increase light), daytime activity and routine, difficult night-time behaviours, taking care of your own (carer's) sleep and using the strategies in the future. Carers kept their own manual, light box and relaxation recordings post intervention., Randomisation and Blinding: A statistician created an electronic randomisation list, stratified by site, using random permuted blocks. Those assessing the outcome were blinded to allocation; participants were not blinded., Main Outcome Measures: Outcomes were assessed at 3 months. (1) Feasibility, defined as the percentage of eligible people who consented to the study recruitment, with an expected value of 50% [95% confidence interval (CI) 41% to 59%]. (2) Acceptability, defined as the percentage of intervention group participants attending ≥ 4 intervention sessions, with an expected value of 75% (95% CI 59% to 87%). The predetermined criterion for progression to the main trial was acceptability of ≥ 70%., Results: Of 95 eligible patients referred, 63 (66%, 95% CI 56% to 76%) consented between 4 August 2016 and 24 March 2017: 61 from memory clinics and two from JDR. Of these, 62 participants (65%, 95% CI 55% to 75%) were randomised: 42 to the intervention arm and 20 to the TAU arm. Thirty-seven out of 42 participants (88%, 95% CI 75% to 96%) adhered to the intervention., Conclusions: The results show that the randomised controlled trial is feasible and that the intervention is acceptable. A higher than expected proportion of eligible patients referred consented to the study and adhered to the intervention., Limitations: Participants were not blinded and were recruited only in London., Future Work: The results of this trial indicate that a future efficacy trial is warranted., Trial Registration: Current Controlled Trials ISCTRN36983298., Funding: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 22, No. 71. See the NIHR Journals Library website for further project information. Funding was also provided by Camden and Islington NHS Foundation Trust and Barnet, Enfield and Haringey Mental Health NHS Trust to pay for excess treatment costs from therapist training and supervision and intervention delivery., Competing Interests: Gill Livingston is on the National Institute for Health Research (NIHR) postdoctoral fellowship board. Gill Livingston and Penny Rapaport have grants from NIHR/Economic and Social Research Council, NIHR Health Technology Assessment (HTA) programme and the Alzheimer’s Society and are supported by North Thames NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC). Simon D Kyle reports grant funding from NIHR HTA, NIHR Oxford Biomedical Research Centre, Arthritis Research UK and the Dr Mortimer & Theresa Sackler Foundation. Claudia Cooper and Gill Livingston are supported by the University College London NIHR Biomedical Research Unit. James A Pickett is an employee of the Alzheimer’s Society. Colin A Espie reports grants from the NIHR HTA programme, NIHR Oxford Biomedical Research Centre, the Wellcome Trust, Education Endowment Foundation and the Dr Mortimer & Theresa Sackler Foundation. In addition, he has a patent US Patent Application Serial No. 14/172,347 INTERACTIVE SYSTEM FOR SLEEP IMPROVEMENT: Docket No. HAME-001 issued and is co-founder and Chief Medical Officer of Big Health Ltd (London, UK), which has developed Sleepio, an online digital cognitive–behavioural therapy intervention for insomnia. He is also a shareholder in Big Health Ltd.

Many people living with dementia experience sleep disturbances yet there are currently no known effective, safe and acceptable treatments. Working with those affected by dementia to co-produce interventions is increasingly promoted to ensure that approaches are fit for purpose and meet the specific needs of target groups. Our aim here is to outline and reflect upon the co-production of Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS:START), an intervention to improve sleep for people living with dementia. Our co-production team brought together experts in the development and testing of manualised interventions in dementia care and cognitive behavioural interventions for sleep disorders, with Alzheimer's Society research network volunteers (ASRNVs) whose lives had been affected by dementia. Here we present the process of intervention development. We worked with (ASRNVs) at each stage of the process bringing together 'experts by training' and 'experts by experience'. (ASRNVs)shared their experiences of sleep disturbances in dementia and how they had managed these difficulties, as well as suggestions for how to overcome barriers to putting the intervention into practice; making (DREAMS:START) more accessible and usable for those in need. In this paper we discuss both the benefits and challenges to this process and what we can learn for future work. Collaborating with 'experts by experience' caring for a relative with sleep difficulties helped us to develop a complex intervention in an accessible and engaging way which we have tested and found to be feasible and acceptable in a randomised controlled trial.

Personhood discourses in dementia care have gained prominence and current care home standards mandate that care should be "person-centred". However, it is unclear how the personhood of staff is construed within the care relationship. This paper aims to explore how the personhood of paid carers of people with dementia can be understood by focussing on the views and experiences of care home staff. We undertook a secondary qualitative analysis of interviews with 25 paid care staff in England, conducted as part of the MARQUE (Managing Agitation and Raising QUality of lifE) study. The authors inductively developed themes around the topic of personhood for staff, contrasting management and care staff perspectives. We found that many care staff are not identified as persons in their own right by their employing institutions, and that there is a general lack of acknowledgment of the moral work of caring that occurs within formal care work. This oversight can reduce the complex relationships of care work to a series of care tasks, challenges care workers' self-worth and self-efficacy, and impede their efforts to deliver person-centred care. We conclude that care staff status as persons in their own right should be explicitly considered in quality standards and supported by employers' policies and practices, not simply for their role in preserving the personhood of people with dementia but for their own sense of valued personhood. Enhancing staff personhood may also result in improved care., Competing Interests: The authors have declared that no competing interests exist.