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

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

Adapted problem adaptation therapy for depression in mild to moderate Alzheimer's disease dementia: A randomized controlled trial.

INTRODUCTION: Trials of effectiveness of treatment options for depression in dementia are an important priority. METHODS: Randomized controlled trial to assess adapted Problem Adaptation Therapy (PATH) for depression in mild/moderate dementia caused by Alzheimer's disease. RESULTS: Three hundred thirty-six participants with mild or moderate dementia, >7 on Cornell Scale for Depression in Dementia (CSDD), randomized to adapted PATH or treatment as usual. Mean age 77.0 years, 39.0% males, mean Mini-Mental State Examination 21.6, mean CSDD 12.9. For primary outcome (CSDD at 6 months), no statistically significant benefit with adapted PATH on the CSDD (6 months: -0.58; 95% CI -1.71 to 0.54). The CSDD at 3 months showed a small benefit with adapted PATH (-1.38; 95% CI -2.54 to -0.21) as did the EQ-5D (-4.97; 95% CI -9.46 to -0.48). DISCUSSION: An eight-session course of adapted PATH plus two booster sessions administered within NHS dementia services was not effective treatment for depression in people with mild and moderate dementia. Future studies should examine the effect of more intensive and longer-term therapy.

Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography.

INTRODUCTION: Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. METHODS AND ANALYSIS: Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. ETHICS AND DISSEMINATION: The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher 'embedded participant' roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.

The memory clinic and psychosocial intervention: Translating past promise into current practices.

Disproportionate negative effects since the pandemic have amplified the already limited post-diagnostic support for older people with dementia. This paper summarizes an exploratory randomized controlled study of a proactive family-based intervention compared with "usual" post-diagnostic dementia care. Memory clinic practitioners collaborated with the family doctor (GP) to coordinate this. At 12-month follow-up, positive effects on mood, behavior, carer coping and maintenance of care at home were found. Current approaches to deliver post-diagnostic support in primary care may require rethinking since (i) GP workloads have increased with low numbers of GPs per head of population in parts of England; and (ii) unlike many other long-term conditions, ongoing stigma, fear and uncertainty associated with dementia adds to the huge complexity of timely care provision. There is a case for return to a "one-stop facility", with a single pathway of continuing multidisciplinary coordinated care for older people with dementia and families. Future longitudinal research could compare structured post-diagnostic psychosocial intervention coordinated by skilled practitioners in a single locality memory service "hub", against other approaches such support organized mostly within primary care. Dementia-specific instruments for outcome measurement are available for use in routine practice, and should be included in such comparative studies.

"The Dynamic Nature of Being a Person": An Ethnographic Study of People Living With Dementia in Their Communities.

BACKGROUND AND OBJECTIVES: A dementia diagnosis can affect social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities. RESEARCH DESIGN AND METHODS: Focused ethnography informed by Spradley's approach to data collection and analysis. Observations in community spaces. RESULTS: Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hr of observation, and researcher field notes. The overarching theme "the dynamic nature of being a person" encapsulates participants' exhibited experiences in negotiating to attain and sustain an acknowledged place in their communities. Two subthemes characterized contexts and actions: (1) "Being me-not dementia": Participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. (2) "Resisting or acquiescing to 'being absent in place'": Participants were often able to resist being absent to the gaze from others, but some social structures and behaviors led to a person being "in place," yet not having their presence confirmed. DISCUSSION AND IMPLICATIONS: People living with dementia can actively draw on personal attributes, familiar rituals, objects, and social roles to continue to present themselves as social beings. Identifying how postdiagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia enabling them to have a continued social presence.

Management of Agitation in Behaviours That Challenge in Dementia Care: Multidisciplinary Perspectives on Non-Pharmacological Strategies.

Objective: NICE guidelines recommend non-pharmacological interventions as the first-line approach for the management of behaviours that challenge. Recent work, however, highlights dissatisfaction with the lack of detailed guidance in the national guidelines regarding non-drug interventions. This study examines the views of practitioners regarding non-pharmacological treatments. It further explores perspectives on non-pharmacological strategies used in the management of agitation occurring within episodes of behaviours that challenge. Methods: Forty-two experienced practitioners attended a workshop where behaviours that challenge were described as occurring in three phases of agitation, using a framework adapted from the Positive Behaviour Support framework (pre-agitation, triggering and escalating, high level). The participants were asked to populate a template derived from the adapted framework. The completed templates recorded the clinical strategies the participants found useful to (i) prevent the occurrence of agitation, (ii) de-escalate distress and (iii) deal with perceived high levels of agitation. Results: The Positive Behaviour Support conceptual framework was perceived by participants as helpful in organising their clinical work. A number of interventions were suggested as preventative strategies: music therapy, doll therapy, physical activity and generic person-centred communication skills to enhance wellbeing. In contrast, de-escalation strategies identified by the participants focused on reducing emotional distress. The approaches for dealing with continued high levels of agitation involved a number of "control and restraint" techniques as well as medication. Conclusion: The template allowed specialist multidisciplinary professionals to identify skills for the management of distress and agitated behaviour linked to the respective phase of arousal. The template has scope to guide practitioners to identify the detail needed for the management of behaviours that challenge. The findings have the potential to influence the contents of forthcoming guidelines on alternatives to psychotropics in dementia care.

A Web-Based Self-management App for Living Well With Dementia: User-Centered Development Study.

BACKGROUND: Self-management, autonomy, and quality of life are key constructs in enabling people to live well with dementia. This population often becomes isolated following diagnosis, but it is important for them to feel encouraged to maintain their daily activities and stay socially active. Promoting Independence in Dementia (PRIDE) fosters social inclusion and greater dementia self-management through an interactive handbook. OBJECTIVE: This study aimed to develop a paper-based PRIDE manual on a web-based platform. METHODS: Two overarching stages were used to create the web-based version of PRIDE. The first was Preliminary Development, which encompassed tendering, preliminary development work, consultations, beta version of the website, user testing and consultation on beta version, and production of the final web-based prototype. The second stage was Development of the Final PRIDE App, which included 2 sprints and further user testing. RESULTS: Through a lengthy development process, modifications were made to app areas such as the log-in process, content layout, and aesthetic appearance. Feedback from the target population was incorporated into the process to achieve a dementia-friendly product. The finished PRIDE app has defined areas for reading dementia-related topics, creating activity plans, and logging these completed activities. CONCLUSIONS: The PRIDE app has evolved from its initial prototype into a more dementia-friendly and usable program that is suitable for further testing. The finished version will be tested in a reach, effectiveness, adoption, implementation, and maintenance study, with its potential reach, effectiveness, and adoption explored. Feedback gathered during the reach, effectiveness, adoption, implementation, and maintenance study will lead to any further developments in the app to increase its applicability to the target audience and usability.

Impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic prescribing for people with dementia in nursing home settings.

OBJECTIVES: This study aimed to determine the impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic use in people with dementia living in nursing homes. METHODS: This was a comparative analysis of baseline data from two large nursing home studies, one conducted during (COVID-iWHELD study) and one prior (WHELD study) to the pandemic. It involves data from 69 and 149 nursing homes, and 1006 and 666 participants respectively. Participants were people with established dementia (score >1 on Clinical Dementia Rating Scale). Resident data included demographics, antipsychotic prescriptions and neuropsychiatric symptoms using the Neuropsychiatric Inventory Nursing Home version. Nursing home data collected were nursing home size and staffing information. RESULTS: Overall prevalence of neuropsychiatric symptoms was unchanged from pre-pandemic prevalence. Mean antipsychotic use across the sample was 32.0%, increased from 18% pre-pandemic (Fisher's exact test p < 0.0001). At a nursing home level, the medians for the low, medium and high tertiles for antipsychotic use were 7%, 20% and 59% respectively, showing a disproportionate rise in tertile three. Residents in these homes also showed a small but significant increase in agitation. CONCLUSION: There has been a significant increase in antipsychotic prescribing in nursing homes since the COVID-19 pandemic, with a disproportionate rise in one third of homes, where median prescription rates for antipsychotics were almost 60%. Strategies are urgently needed to identify these nursing homes and introduce pro-active support to bring antipsychotic prescription rates back to pre-pandemic levels.

Data resource profile: the virtual international care homes trials archive (VICHTA).

Introduction: Randomised controlled trials (RCTs) conducted in care home settings address a range of health conditions impacting older people, but often include a common core of data about residents and the care home environment. These data can be used to inform service provision, but accessing these data can be challenging. Methods: The Virtual International Care Home Trials Archive (VICHTA) collates care home RCTs conducted since 2010, with >100 participants, across multiple conditions, with documented eligibility criteria, initially identified from a scoping review. A Steering Committee comprising contributing trialists oversees proposed uses of fully anonymised data. We characterised available demography and outcomes to inform potential analyses. Data are accessible via application to the Virtual Trials Archives, through a secure online analysis platform. Trial recruitment is ongoing and future expansion will include international studies. Results: The first phase of VICHTA includes data from six UK RCTs, with individual participant data (IPD) on 5,674 residents across 308 care homes. IPD include age, sex, dementia status, length of stay, quality of life, clinical outcome measures, medications, resource use, and care home characteristics, such as funding, case mix, and occupancy. Follow-up ranges between four and sixteen months. Conclusions: VICHTA collates and makes accessible data on a complex and under-represented research population for novel analyses, and to inform design of future studies. Planned expansion to international care home RCTs will facilitate a wider range of research questions. Interested collaborators can submit trial data or request data at http://www.virtualtrialsarchives.org.

Stigma among UK family carers of people living with dementia.

BACKGROUND: Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. AIMS: To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. METHOD: The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. RESULTS: The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). CONCLUSIONS: The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.

The Journeying through Dementia psychosocial intervention versus usual care study: a single-blind, parallel group, phase 3 trial.

BACKGROUND: There is an urgent clinical need for evidence-based psychosocial interventions for people with mild dementia. We aimed to determine the clinical benefits and cost-effectiveness of Journeying through Dementia (JtD), an intervention designed to promote wellbeing and independence in people with mild dementia. METHODS: We did a single-blind, parallel group, individually randomised, phase 3 trial at 13 National Health Service sites across England. People with mild dementia (Mini-Mental State Examination score of ≥18) who lived in the community were eligible for inclusion. Patients were centrally randomly assigned (1:1) to receive the JtD intervention plus standard care (JtD group) or standard care only (standard care group). Randomisation was stratified by study site. The JtD intervention included 12 group and four one-to-one sessions, delivered in the community at each site. The primary endpoint was Dementia Related Quality of Life (DEMQOL) 8 months after randomisation, assessed according to the intention-to-treat principle. Only outcome assessors were masked to group assignment. A cost-effectiveness analysis reported cost per quality-adjusted life-year (QALY) from a UK NHS and social care perspective. The study is registered with ISRCTN, ISRCTN17993825. FINDINGS: Between Nov 30, 2016, and Aug 31, 2018, 1183 patients were screened for inclusion, of whom 480 (41%) participants were randomly assigned: 241 (50%) to the JtD group and 239 (50%) to the standard care group. Intervention adherence was very good: 165 (68%) of 241 participants in the JtD group attended at least ten of the 16 sessions. Mean DEMQOL scores at 8 months were 93·3 (SD 13·0) for the JtD group and 91·9 (SD 14·6) for the control group. Difference in means was 0·9 (95% CI -1·2 to 3·0; p=0·38) after adjustment for covariates, lower than that identified as clinically meaningful. Incremental cost per QALY ranged from £88 000 to -£205 000, suggesting that JtD was not cost-effective. Unrelated serious adverse events were reported by 40 (17%) patients in the JtD group and 35 (15%) patients in the standard care group. INTERPRETATION: In common with other studies, the JtD intervention was not proven effective. However, this complex trial successfully recruited and retained people with dementia without necessarily involving carers. Additionally, people with dementia were actively involved as participants and study advisers throughout. More research into methods of measuring small, meaningful changes in this population is needed. Questions remain regarding how services can match the complex, diverse, and individual needs of people with mild dementia, and how interventions to meet such needs can be delivered at scale. FUNDING: UK National Institute of Health Research Health Technology Assessment Programme.

Person-centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures.

Introduction: The review described in this paper builds upon the Dementia Care Practice Recommendations (DCPR) published by the Alzheimer's Association in 2018 and addresses behavior change and the need for targeted outcome measures that evolve from person-centered frameworks and help evaluate interventions. Apathy and resistance to care (RTC) are two specific behavioral expressions of unmet need or distress exhibited by people living with dementia, which are upsetting to formal and family caregivers and compromise quality of life for people living with dementia. Methods: We conducted literature searches of major databases (PsycInfo, PubMed, EBSCO, CINAHL) for papers examining apathy and RTC constructs in samples of people living with dementia. Reliability and validity coefficients were reviewed and reported, along with examination of whether each measure facilitates contextual understanding of behavior. Results: Three stand-alone measures of RTC and ten measures of apathy were identified and reviewed. The RTC measures demonstrated good psychometric properties but do not include the perspective of the person living with dementia or contextual aspects of the behavior. The identified apathy measures demonstrated fair to good psychometric properties, and although there is greater consideration of context, none adequately include the perspective of the person living with dementia. Discussion: Although reliable and valid measures have been developed to measure apathy and RTC in people living with dementia, there is greater need for conceptually driven measurement of behavior context and for tools that elicit and include the perspective of the person living with dementia.

An intervention to promote self-management, independence and self-efficacy in people with early-stage dementia: the Journeying through Dementia RCT.

BACKGROUND: There are few effective interventions for dementia. AIM: To determine the clinical effectiveness and cost-effectiveness of an intervention to promote self-management, independence and self-efficacy in people with early-stage dementia. OBJECTIVES: To undertake a randomised controlled trial of the Journeying through Dementia intervention compared with usual care, conduct an internal pilot testing feasibility, assess intervention delivery fidelity and undertake a qualitative exploration of participants' experiences. DESIGN: A pragmatic two-arm individually randomised trial analysed by intention to treat. PARTICIPANTS: A total of 480 people diagnosed with mild dementia, with capacity to make informed decisions, living in the community and not participating in other studies, and 350 supporters whom they identified, from 13 locations in England, took part. INTERVENTION: Those randomised to the Journeying through Dementia intervention (n = 241) were invited to take part in 12 weekly facilitated groups and four one-to-one sessions delivered in the community by secondary care staff, in addition to their usual care. The control group (n = 239) received usual care. Usual care included drug treatment, needs assessment and referral to appropriate services. Usual care at each site was recorded. MAIN OUTCOME MEASURES: The primary outcome was Dementia-Related Quality of Life score at 8 months post randomisation, with higher scores representing higher quality of life. Secondary outcomes included resource use, psychological well-being, self-management, instrumental activities of daily living and health-related quality of life. RANDOMISATION AND BLINDING: Participants were randomised in a 1 : 1 ratio. Staff conducting outcome assessments were blinded. DATA SOURCES: Outcome measures were administered in participants' homes at baseline and at 8 and 12 months post randomisation. Interviews were conducted with participants, participating carers and interventionalists. RESULTS: The mean Dementia-Related Quality of Life score at 8 months was 93.3 (standard deviation 13.0) in the intervention arm (n = 191) and 91.9 (standard deviation 14.6) in the control arm (n = 197), with a difference in means of 0.9 (95% confidence interval -1.2 to 3.0; p = 0.380) after adjustment for covariates. This effect size (0.9) was less than the 4 points defined as clinically meaningful. For other outcomes, a difference was found only for Diener's Flourishing Scale (adjusted mean difference 1.2, 95% confidence interval 0.1 to 2.3), in favour of the intervention (i.e. in a positive direction). The Journeying through Dementia intervention cost £608 more than usual care (95% confidence interval £105 to £1179) and had negligible difference in quality-adjusted life-years (-0.003, 95% confidence interval -0.044 to 0.038). Therefore, the Journeying through Dementia intervention had a mean incremental cost per quality-adjusted life-year of -£202,857 (95% confidence interval -£534,733 to £483,739); however, there is considerable uncertainty around this. Assessed fidelity was good. Interviewed participants described receiving some benefit and a minority benefited greatly. However, negative aspects were also raised by a minority. Seventeen per cent of participants in the intervention arm and 15% of participants in the control arm experienced at least one serious adverse event. None of the serious adverse events were classified as related to the intervention. LIMITATIONS: Study limitations include recruitment of an active population, delivery challenges and limitations of existing outcome measures. CONCLUSIONS: The Journeying through Dementia programme is not clinically effective, is unlikely to be cost-effective and cannot be recommended in its existing format. FUTURE WORK: Research should focus on the creation of new outcome measures to assess well-being in dementia and on using elements of the intervention, such as enabling enactment in the community. TRIAL REGISTRATION: This trial is registered as ISRCTN17993825. FUNDING: This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 24. See the NIHR Journals Library website for further project information.

There are few services proven effective for people with mild dementia. We therefore explored the potential benefit of a programme called Journeying through Dementia. The content, devised in partnership with people living with dementia, aims to help affected individuals to live well and participate in life. The programme involves meeting in groups of about eight every week for 12 weeks. Each person also has four face-to-face meetings with a staff member. Carers are invited to 3 of the 12 group meetings to all individual meetings if the participant wanted this involvement. A total of 480 people with dementia and 350 carers from 13 locations in England took part. Just over half of the participants were randomly allocated to the new programme, whereas the others were not. This allowed us to compare the groups. We were interested in whether or not attending the Journeying through Dementia programme improved participants' quality of life. The results showed that it did not. We also measured participants' mood, self-management skills, positive attitudes and ability with daily living skills. Only one measure of positive psychology suggested even a small benefit. There was no difference between groups in the remaining measures. Although some individual participants described being more confident, enjoying social contact, trying new activities, feeling valued and having increased independence, overall, the programme is unlikely to be worth implementing. Certain aspects of the programme are worth implementing.

Family carer perspectives on the language of behaviour change in dementia: an online mixed methods survey.

OBJECTIVE: following the #BanBPSD campaign there has been critical interest in common terminology used for 'changes in behaviour' associated with dementia. However, commentaries and emerging studies have not fully considered family carer perspectives. This study explores the views of family carers on terminology and language for this paradigm. METHOD: a mixed methods online survey was conducted with family carers. Language preferences were scoped and examined with supporting open-ended questions that explored the reasons for choices. RESULTS: about 229 family carers completed the survey. Terms such as Challenging Behaviour, Behaviour that Challenges and Behavioural and Psychological Symptoms of dementia were mostly disliked. The most preferred term was a new concept called 'Behavioural and Emotional Expressions of Need' that few people had previously heard of. Overall, carers preferred positively construed, easily understood, person-centred terms that attributed changes in behaviour to unmet need, which also acknowledged the carer's role in management. CONCLUSIONS: given that carers are often the agents of change for this paradigm-where they may also be called on to act as proxy decision makers, it is important that professionals take time to explore their understandings and give due consideration to the language used when offering tailored interventions. These findings suggest that frequently used terms for changes in behaviour associated with dementia, such as Challenging Behaviour, BtC and BPSD, should be avoided.

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit.

BACKGROUND: Improving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia. METHODS/DESIGN: It is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams' catchment area recorded 6 months after randomisation. Other outcomes include quality of life measures for people with dementia and their carers, practitioner impact measures, acute hospital admissions and costs. To enhance understanding of the Resource Kit intervention, qualitative work will explore staff, patient and carers' experience. DISCUSSION: The Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost-effective in this study, this will enhance the probability of its incorporation into mainstream practice. TRIAL REGISTRATION: ISRCTN 42855694 ; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 289982.

Recognition of social health: A conceptual framework in the context of dementia research.

Objective: The recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies. Process: We use the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility. An iterative consensus-based process was used within the international multidisciplinary SHARED project. Conceptual framework: Underpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in a definition of social health as wellbeing that relies on capacities both of the individual and the social environment. Consequently, domains in the conceptual framework are on both the individual (e.g., social participation) and the social environmental levels (e.g., social network). We hypothesize that social health acts as a driver for use of cognitive reserve which can then slow cognitive impairment or maintain cognitive functioning. The feasibility of the conceptual framework is demonstrated in its practical use in identifying and structuring of social health markers within the SHARED project. Discussion: The conceptual framework provides guidance for future research and facilitates identification of modifiable risk and protective factors, which may in turn shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.

Professional perspectives on applying the NICE and British Psychological Society Guidelines for the management of Behaviours that Challenge in dementia care: an e-survey.

OBJECTIVES: Behaviours that challenge (BtC) reflect the most costly and burdensome aspects of dementia where non-pharmacological interventions rather than antipsychotic medication have been recommended as first-line approaches for over a decade (NICE 2006). This paper outlines professionals' views about their application of the Dementia NICE Guideline 97 (2018) and a British Psychological Society, Division of Clinical Psychology (BPS-DCP) Briefing paper (2013) on alternatives to antipsychotics. METHODS: A mixed-methods 34-item e-survey, with five items about the use of the NICE Guideline 97 (2018) and the BPS-DCP Briefing paper (2013) for the management of BtC, was conducted. Participants were recruited through multidisciplinary professional dementia networks across the United Kingdom. Quantitative data were descriptively summarized and thematic analysis of open-ended questions undertaken. RESULTS: Two hundred and forty-seven participants completed the questions relating to guidelines. Mean ratings of 'moderately useful' for both the NICE and BPS-DCP guidance were obtained across professions and geographical locations, with the exception of psychiatrists who rated the NICE guidance as 'slightly useful'. The qualitative themes identified were a mix of positive and cautionary perspectives, relating to 'evidence base', the 'accessibility of the guides', 'problems with implementation', and 'lack of detail and clarity'. CONCLUSION: Professionals were cautiously positive regarding the guidance for BtC management, but highlighted a need for improved clarity about the use of non-pharmacological approaches, and more specificity about how these can be implemented in clinical settings. Tailored 'setting-specific' toolkits are required to update and refine the BPS-DCP (2013) if the aspirations of the NICE Dementia Guideline 97 (2018) are to inform professional practice. PRACTITIONER POINTS: Owing to major concerns about the problematic side effects of using psychotropics in the treatment of behaviours that challenge (BtC), there is a need for national guidance on the use on non-drug alternatives. The NICE (2018) guidance was seen by participants as accessible and clear but lacking in detail in the use of non-pharmacological interventions, which are the first-line treatments for BtC. The BPS Guidelines on 'Alternatives to antipsychotics' (2013) were seen as having good structured advice for allocating non-pharmacological resources but were lacking in flexibility for meeting individual needs or what might be an acceptable fit for clinical services. The findings suggest that we need to develop UK-wide bespoke specific advice for practitioners and services for both the use and the delivery of non-pharmacological evidence-based interventions for BtC.

Promoting Independence in Dementia (PRIDE): A Feasibility Randomized Controlled Trial.

BACKGROUND: There is a need for interventions to foster and maintain independence for people with dementia to support community living, improve morale, and reduce stigma. We investigated a social intervention to promote living well and enhance independence for people with mild dementia. METHODS: In this two arm parallel group, feasibility RCT at six sites in England, participants were randomized (1:1) to the PRIDE intervention (encompassing social, physical, and cognitive domains supported by a facilitator over three sessions) compared to usual care only. The main objective was to determine the feasibility of a main trial with respect to measures of recruitment, retention, and adherence to the intervention. RESULTS: During a 7-month period, 402 people were invited to the trial, 148 were screened (37%, 95% confidence interval (CI)=32-42%), 137 were eligible at pre-consent, 94 consented to the trial (69% of those eligible, 95% CI=60-76%), and 92 were randomized (46 to each group). Of those allocated to the intervention, 42 (91%) received at least one of three intervention sessions. Outcome assessment follow-up visits were completed for 73 participants at 6 months (79%, 95% CI=70-87%), and this was similar for both groups. CONCLUSION: A large multi-center trial of the PRIDE intervention in community-dwelling people with mild dementia is feasible using systematic recruitment strategies. The intervention was successfully delivered and well received by participants. Findings from this study will be used to refine the design and processes for a definitive RCT. TRIAL REGISTRATION: ISRCTN, ISRCTN11288961, registered on 23 October 2018.

The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia.

AIMS: The aim of this study was to explore the opinions of people with dementia, about the language used to describe changes in behaviour associated with dementia. DESIGN: This study adopted a human rights approach in a mixed methods convergent parallel synthesis design. METHODS: Online and paper-based questionnaire data were collected between November 2019 and March 2020. A combination of convenience and purposive sampling was used to invite people with dementia to participate. RESULTS: In total, 54 people completed the survey. There was no clear consensus on a preferred term, but 28.3% preferred the term 'unmet needs' for describing changes in behaviour associated with dementia. Qualitative data revealed important nuances and challenges for researchers and practitioners in relation to terminology for this paradigm. Participants felt that the language we use to talk about changes in behaviour could influence how people with dementia are viewed and treated and how people feel about themselves. CONCLUSION: The majority of participants were familiar with a range of terminology. There was no universal agreement on terminology, but there was an overall preference for terms that reflect the unmet needs likely to underlie perceived changes in behaviour. IMPACT: People with dementia raised concerns about the language used to describe changes in behaviour that can occur in dementia. There is scope for improvements in the language used for this paradigm in both research and practice. Following a diagnosis of dementia, clinicians need to take the time to explore an individual's preferences and understandings. They can then share their own understanding about the potential for changed behaviour and if relevant, how any negative impact of this may be minimized.

Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial.

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.