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IntroductionIndividuals with dementia residing in care homes can rely heavily on care staff to access activities and meaningful interactions. Previous research suggests that care home interactions can be short, fragmented and task-orientated due to staff workload and residents’ language impairments. However, music has the potential to be an alternative communication form that remains intact in the later stages of dementia. This systematic review aims to explore how care home music interventions can facilitate social interactions.MethodsA narrative synthesis was conducted to explore the mechanisms behind how and why care home music intervention facilitate social interactions. The four-element framework guided analysis; (1) Developing a theory, (2) Developing a preliminary synthesis, (3) Exploring relationships, (4) Assessing robustness.FindingsThe final synthesis included 23 articles. The studies consisted of music therapy sessions, personalised music listening, structured music singing or instrument playing sessions and music therapeutic care. Despite the difference in music interventions, most studies reported an increase in residents’ sociable verbal and non-verbal communication and a decrease in unsociable communication. Music interventions allowed residents to reminisce, express themselves, focus and connect with others.DiscussionThe studies highlighted music interventions are accessible to all residents with dementia despite their impairments. The adaptability allows individuals to continue to connect and express themselves even when language deteriorates. More research is needed into the enablers and barriers to implementing interventions into practice, as this systematic review has highlighted that some form of music intervention for all residents can be highly beneficial. Care homes use of music could increase social interactions and meaningful activities.

Background There are currently major efforts underway in Ghana to address stigma and discrimination, and promote the human rights of those with mental health conditions, within mental health services and the community, working with the World Health Organization’s QualityRights initiative. The present study aims to investigate attitudes towards people with lived experience of mental health conditions and psychosocial disabilities as rights holders. Methods Stakeholders within the Ghanaian mental health system and community, including health professionals, policy makers, and persons with lived experience, completed the QualityRights pre-training questionnaire. The items examined attitudes towards coercion, legal capacity, service environment, and community inclusion. Additional analyses explored how far participant factors may link to attitudes. Results Overall, attitudes towards the rights of persons with lived experience were not well aligned with a human rights approach to mental health. Most people supported the use of coercive practices and often thought that health practitioners and family members were in the best position to make treatment decisions. Health/mental health professionals were less likely to endorse coercive measures compared to other groups. Conclusion This was the first in-depth study assessing attitudes towards persons with lived experience as rights holders in Ghana, and frequently attitudes did not comply with human rights standards, demonstrating a need for training initiatives to combat stigma and discrimination and promote human rights.

Background Stigma often surrounds people with dementia when it comes to use of computer technology, although evidence does not always support this. More understanding is needed to investigate attitudes and experience in relation to computer technology use among those living with dementia and their readiness to use it to support self-management. Methods An online self-report questionnaire was completed by adults living with a dementia diagnosis and those living with them. Questions explored how long the participants had been using computer technology; how regularly they used it; the popularity of common communication apps; and whether they were interested in using an app to support their independence. Results 47 participants with dementia and 62 supporters responded to the questionnaire. There were no obvious differences between those with dementia and supporters when it came to regular technology usage and both groups showed positive attitudes to the use of it for independence in dementia. Conclusions There was active use of computer technology among this population. Benefits were shown to include communication, increasing individuals’ understanding of dementia diagnoses, and enabling independent activities for both those with dementia and supporters.

BACKGROUND People with multiple sclerosis often experience depression and anxiety, negatively affecting their quality of life, especially their social life. Peer support, whether in person or online, could improve social connection and coping. Online peer support allows people to engage from their home at a time that suits them. We sought to explore the benefits and challenges of online peer support and to identify successful elements of online peer support for people with multiple sclerosis. METHODS Using the narrative synthesis method, 6 databases were searched in April 2020 for articles published between 1989 and 2020; the search was updated in May 2022. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. RESULTS Of 10,987 unique articles identified through the database search, 11 were included. Benefits of online peer support included sharing information and experiences and emotional support. Successful elements included having a dedicated space to save information and the convenience of online peer support. Challenges included verification of information and the lack of nonverbal communication. CONCLUSIONS Online peer support can help those unable to access in-person support groups and can reduce the risk of social isolation. However, multiple sclerosis symptoms may make it difficult to use technological devices. Research is needed to further explore potential barriers to online peer support.

BackgroundDementia is associated with frailty leading to increased risks of falls and hospitalisations. Interventions are required to maintain functional ability, strength and balance.DesignMulti-centre parallel group randomised controlled trial, with embedded process evaluation. Procedures were adapted during the COVID-19 pandemic.ParticipantsPeople with mild dementia or mild cognitive impairment (MCI), living at home, and a family member or carer.ObjectivesTo determine the effectiveness of an exercise and functional activity therapy intervention compared to usual care.InterventionA specially-designed dementia-specific rehabilitation programme focussing on strength, balance, physical activity and performance of ADL, which was tailored, progressive, addressed risk and the psychological and learning needs of people with dementia, providing up to 50 therapy sessions over 12 months. The control group received usual care plus a falls risk assessment.Main outcome measureThe primary outcome was the informant-reported Disability Assessment for Dementia (DAD) 12 months after randomisation. Secondary outcomes were: self-reported ADL, cognition, physical activity, quality of life, frailty, balance, functional mobility, fear of falling, mood, carer strain and service use (at 12 months) and falls (between months 4 and 15).Results365 people were randomised, 183 to intervention and 182 to control. Median age of participants was 80 years (range 65-95), median Montreal Cognitive Assessment score 20/30 (range 13-26), 58% were men. Participants received a median of 31 (IQR = 22-40) therapy sessions out of a possible maximum of 50. Participants reported completing a mean 121 minutes/week of PrAISED activity outside of supervised sessions. Primary outcome data were available for 149 (intervention) and 141 (control) participants. There was no difference in DAD scores between groups: adjusted mean difference -1.3/100, 95% Confidence Interval (−5.2 to +2.6); Cohen’s d effect size -0.06 (−0.26 to +0.15); p=0.5. Upper 95% confidence intervals excluded small to moderate effects on any of the range of secondary outcome measures. Between months 4 and 15 there were 79 falls in the intervention group and 200 falls in the control group, adjusted incidence rate ratio 0.78 (0.5 to 1.3); p= 0.3.ConclusionThe intensive PrAISED programme of exercise and functional activity training did not improve ADLs, physical activity, quality of life, reduce falls or improve any other secondary health status outcomes even though uptake was good. Future research should consider alternative approaches to risk reduction and ability maintenance.Trial registrationISRCTN15320670.FundingNational Institute for Health and Care ResearchWhat is already knownDementia is associated with progressive loss of functional ability, including activities of daily living and mobility, and a high risk of fallsExercise programmes and rehabilitation therapies may improve ability, or slow the rate of decline, but evidence from trials and systematic reviews is equivocalWhat this study tells usWe developed an intensive dementia-specific exercise and functional activity rehabilitation programme, lasting 12 months, taking account of motivation, learning needs and context, in particular the need to engage carers, and evaluated it in a randomised controlled trialThe programme was very well received by participants and therapists, but had no effect on activities of daily living, physical activity, quality of life, falls, cognition or any other health status outcomeWe are unlikely to be able to change rate of loss of ability in dementia through exercise or functionally orientated rehabilitation therapy.We need different ways of defining wellbeing after a dementia diagnosis.

Background Despite growing recognition of essential human rights, people with mental health conditions and psychosocial, intellectual, or cognitive disabilities’ rights are known to be frequently violated in mental healthcare worldwide, with common use of coercive practices and limited recognition of people’s right to exercise their legal capacity and make decisions for themselves on treatment and other issues affecting them. To tackle this issue, Ghana adopted the WHO QualityRights Initiative in 2019. This aims to introduce a right-based, person-centred recovery approach within the mental health care system, protecting and promoting the rights of people with mental health conditions, psychosocial, cognitive, and intellectual disabilities in the healthcare context and community. Methods E-training (capacity-building) was provided in Ghana across a broad array of stakeholder groups including healthcare professionals, carers, and people with lived experience. The training covered legal capacity, coercion, community inclusion, recovery approach, service environment, and the negative attitudes commonly held by stakeholder groups; it was completed by 17,000 people in Ghana as of December 2021. We assessed the impact of the e-training on attitudes through comparing trainees’ pre- and post-questionnaire responses on 17 items, each measured on a 5-point Likert scale (strongly disagree to strongly agree), such that higher scores indicated negative attitudes towards persons with mental health conditions and psychosocial disabilities as rights holders. Analyses were conducted on two main groups: matched pairs (417 pairs of baseline and follow-up questionnaire responses matched to a high degree of certainty), and the unmatched group (4299 individual completed questionnaire responses). Results We assessed the impact of the WHO QualityRights e-training on attitudes: training resulted in highly significant attitude changes towards alignment with human rights, with scores changing by approximately 40% between baseline and follow-up. In particular, attitude changes were seen in items representing treatment choice, legal capacity, and coercion. This change was not affected by age, gender, or background experience. Conclusions The QualityRights e-training programme is effective in changing people’s (especially healthcare professionals’) attitudes towards people with mental health conditions and psychosocial, intellectual, or cognitive disabilities: this is a step towards mental healthcare being more with human rights-based worldwide.

Background: Tackling modifiable risk factors such as physical inactivity currently represents the only way to reduce the increasing prevalence of dementia worldwide. Aim: This study investigated attitudes to increasing physical activity to reduce risk of dementia in people over 50. Methods: Attitudes to increasing physical activity to reduce risk of dementia were assessed in a national online survey promoted via online forums and public adverts. The Motivation to Change Behaviour for Dementia Risk Reduction (MOCHAD-10) scale examined motivation for lifestyle change. Multivariable logistic regression was used to identify the predictors of willingness and motivation to increase physical activity. Results: Data from 3,948 individuals showed most people were moderately/very physically active (80%). People more likely to be physically active had better health and education, were older, male, and had a partner. People willing to increase physical activity (73%) were more likely to be younger, non-White, underweight, had better health and lifestyles, and had experience caring for someone with dementia. People with higher levels of motivation to change lifestyle (MOCHAD-10 subscales) were more likely to be female, younger, in poorer physical/mental health, had lower perceived mental activity, and were a carer for someone with dementia. Conclusion: Men and those with better health were more physically active. Those who were more motivated to increase physical activity were not necessarily able to be physically active. Multisectoral public health strategies should seek to use the high motivation levels among this group to mitigate the barriers related to physical activity for dementia risk reduction.

Background People with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online. Objectives We explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators. Methods A focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach. Findings Four focus groups with UK-based peer support groups were conducted through the group’s usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges. Conclusion Online platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.

Peer reviewed: True, One way of supporting people living with dementia is assisting them to live in their homes (as opposed to being admitted to hospital or other facility) and providing them with a specialist service that responds to crises. This makes it important to understand how best to organize such crisis response services. This study examines practitioners' actions to reduce inpatient admissions among this population. Through interviews with healthcare practitioners, we find that practitioners negotiate a complex intersection between (1) what constitutes a crisis in relation to the patient and/or the carer, (2) the demands of building a working relationship with both the patient and their family carers, and (3) ensuring effective communications with social services responsible for long-term community support. Findings suggest that policies aimed at reducing admissions should be based on a model of care that more closely maps practitioners' relational and bio-medical work in these services.

Background With an increasingly ageing population worldwide, the predominant attitude towards ageing is still negative. Negative stereotypes have detrimental effects on individuals’ physical and mental health. Evidence is required about factors that may predict and change these views. This study aimed to investigate if an older person’s attitude towards dementia, their belief in a just world and sense of coherence is associated with their attitudes to ageing. Methods A 25-min online survey was completed by 2,675 participants aged 50 or over who were current residents of the United Kingdom (UK). Questions included demographics, overall health, dementia carer, dementia relative status and retirement status. Standardised scales used were the Attitudes to Ageing Questionnaire (AAQ), Dementia Attitudes Scale (DAS), Just World Scale (JWS) and Sense of Coherence Scale-13 (SOC). Data was analysed with descriptive, two-tailed bivariate Pearson’s correlations, simple, and hierarchical regression analyses. Results Attitudes to dementia, just world beliefs, and sense of coherence were all significantly positively correlated with AAQ-Total, with SOC sub-scale “Meaningfulness” showing the strongest correlation. In a hierarchical regression model, higher scores on SOC-Meaningfulness, DAS-Total and belief in a just world for oneself all predicted more positive attitudes to ageing. Conclusions The more positive an individual’s attitude to dementia and the stronger they hold the belief that the world is just and coherent, the more likely they are to display positive attitudes to ageing. This initial evidence helps create a greater understanding of the factors that drive attitudes and stigma and may have implications for public health messaging.

BACKGROUND Previous research has suggested that care home interactions need significant improvements, especially those between staff and residents with dementia. Reasons for the lack of interactions are staff time pressures and residents’ language impairments. Although residents may experience reduced language abilities, they can continue to communicate through other forms, including nonverbal communication and music. Person Attuned Musical Interactions (PAMI) is a staff training tool that provides staff with music therapy skill-sharing to promote high-quality interactions between staff and residents using nonverbal communication and music. The tool was originally developed in Denmark. To ensure that the tool is appropriate for UK care homes, a team of researchers in the United Kingdom have culturally adapted the tool. OBJECTIVE This study aims to investigate the appropriateness of the adapted UK manual for UK care homes and to explore the impact of PAMI on residents with dementia and care staff. METHODS The project consists of 2 phases, a qualitative field-testing study and a mixed methods evaluation study, which have been developed following the Medical Research Council’s guidelines for complex interventions. Care staff and residents with dementia will be recruited from care homes in Lincolnshire, where the care staff will be trained in the PAMI intervention before implementing the intervention in their daily routines. Fortnightly reflective sessions will be provided throughout the phases to provide supervision and monitoring. The qualitative methods include interviews, reflective session transcripts, diary entries, and resident experience questionnaires. The quantitative outcome measures are residents’ music engagement, staff’s dementia competence, residents’ quality of life, and staff burden. The resident’s music engagement will be administered at 9 fortnightly time points. Staff’s dementia competence, resident’s quality of life, and staff burden will be administered at preintervention and postintervention time points. RESULTS The study has been funded by The Music Therapy Charity as part of a PhD studentship. The study began recruiting in September 2021. The research team aims to publish the results of the first phase in July to September 2023 and those of the second phase in October to December 2023. CONCLUSIONS This study will be the first to investigate the culturally adapted UK PAMI. Therefore, it will provide feedback on the appropriateness of the manual for UK care homes. The PAMI intervention has the potential to offer high-quality music intervention training to a larger population of care homes who may currently be restricted by finances, the availability of time, and a lack of training opportunities. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/43408

Purpose This study aims to explore the utility of collaborative knowledge sharing with stakeholders in developing and evaluating a training programme for health professionals to implement a social intervention in dementia research. Design/methodology/approach The programme consisted of two phases: 1) development phase guided by the Buckley and Caple’s training model and 2) evaluation phase drew on the Kirkpatrick’s evaluation model. Survey and interview data was collected from health professionals, people with dementia and their supporters who attended the training programme, delivered or participated in the intervention. Qualitative data was analysed using the framework analysis. Findings Seven health professionals participated in consultations in the development phase. In the evaluation phase, 20 intervention facilitators completed the post one-day training evaluations and three took part in the intervention interviews. Eight people with dementia and their supporters from the promoting independence in dementia feasibility study participated in focus groups interviews. The findings show that intervention facilitators were satisfied with the training programme. They learnt new knowledge and skills through an interactive learning environment and demonstrated competencies in motivating people with dementia to engage in the intervention. As a result, this training programme was feasible to train intervention facilitators. Practical implications The findings could be implemented in other research training contexts where those delivering research interventions have professional skills but do not have knowledge of the theories and protocols of a research intervention. Originality/value This study provided insights into the value of collaborative knowledge sharing between academic researchers and multiple non-academic stakeholders that generated knowledge and maximised power through building new capacities and alliances.

Background Cognitive stimulation therapy (CST) is a psychosocial intervention for people with dementia and can benefit cognition and quality of life. A touch-screen individualised CST (iCST) application has been developed to improve on accessibility and provide increased interactivity. This study aimed to explore the attitudes of people with dementia, carers and healthcare professionals in Indonesia towards the iCST application and related technology. Methods Four focus groups were organised: one comprising family carers ( n = 3), two comprising people with dementia and family carers ( n = 12) and one made up of family carers and home care workers ( n = 3). Participants discussed the uses of technology, tried out the iCST application and completed a usability and acceptability questionnaire. Furthermore, 21 healthcare professionals attended an expert meeting to discuss the potential of implementing the iCST application in the community. Results Attitudes towards technology were positive but lack of experience, difficulties with operating devices and a limited infrastructure to support technology were described as barriers. The iCST application was seen as an interesting tool to support mental stimulation. Compared with people with dementia, carers were more willing to use the application and rated its usability higher. Healthcare professionals were positive about the interactive features of the application and judged that it could be useful within the family context. Discussion Low-cost and low-infrastructure technology like iCST can meet the needs for stimulation of people with dementia in Indonesia and other countries. By understanding the attitudes of people with dementia and carers towards IT and their willingness to adopt technology like the iCST application, we are better placed to overcome potential obstacles to its implementation. It appears that systemic changes are needed to facilitate wider use of IT particularly in dementia care. These include needs to empower end users, strengthen access and connectivity to technology, and improve diagnostic support.

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.

Objectives:Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this.Method:The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators.Results:Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators.Conclusions:The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

Background The effective management of agitation and other neuropsychiatric and behavioural symptoms in people with dementia is a major challenge, particularly in care home settings, where dementia severity is higher and there is limited training and support for care staff. There is evidence for the value of staff training and the use of psychosocial approaches; however, no intervention currently exists that combines these elements into an intervention that is fit for purpose and effective in these settings based on evidence from a randomised controlled trial. Objective The objective was to develop and evaluate a complex intervention to improve well-being, reduce antipsychotic use and improve quality of life in people with dementia in care homes through person-centred care, management of agitation and non-drug approaches. Design This was a 5-year programme that consisted of six work packages. Work package 1 consisted of two systematic reviews of personalised psychosocial interventions for behavioural and psychological symptoms for people with dementia in care homes. Work package 2 consisted of a metasynthesis of studies examining implementation of psychosocial interventions, in addition to developing a draft Well-being and Health for people with Dementia (WHELD) programme. Work package 3 consisted of a factorial study of elements of the draft WHELD programme in 16 care homes. Work package 4 involved optimisation of the WHELD programme based on work package 3 data. Work package 5 involved a multicentre randomised controlled trial in 69 care homes, which evaluated the impact of the optimised WHELD programme on quality of life, agitation and overall neuropsychiatric symptoms in people with dementia. Work package 6 focused on dissemination of the programme. Setting This programme was carried out in care homes in the UK. Participants Participants of this programme were people with dementia living in care homes, and the health and care professionals providing treatment and care in these settings. Results Work package 1: reviews identified randomised controlled trials and qualitative evidence supporting the use of psychosocial approaches to manage behavioural symptoms, but highlighted a concerning lack of evidence-based training manuals in current use. Work package 2: the meta-analysis identified key issues in promoting the use of interventions in care homes. The WHELD programme was developed through adaptation of published approaches. Work package 3: the factorial trial showed that antipsychotic review alone significantly reduced antipsychotic use by 50% (odds ratio 0.17, 95% confidence interval 0.05 to 0.60). Antipsychotic review plus social interaction significantly reduced mortality (odds ratio 0.36, 95% confidence interval 0.23 to 0.57), but this group showed significantly worse outcomes in behavioural and psychological symptoms of dementia than the group receiving neither antipsychotic review nor social interaction (mean difference 7.37 symptoms, 95% confidence interval 1.53 to 13.22 symptoms). This detrimental impact was reduced when combined with social interaction (mean difference –0.44 points, 95% confidence interval –4.39 to 3.52 points), but with no significant benefits for agitation. The exercise intervention significantly improved neuropsychiatric symptoms (mean difference –3.58 symptoms, 95% confidence interval –7.08 to –0.09 symptoms) but not depression (mean difference –1.21 points, 95% confidence interval –4.35 to 1.93 points). Qualitative work with care staff provided additional insights into the acceptability and feasibility of the intervention. Work package 4: optimisation of the WHELD programme led to a final version that combined person-centred care training with social interaction and pleasant activities. The intervention was adapted for delivery through a ‘champion’ model. Work package 5: a large-scale, multicentre randomised controlled trial in 69 care homes showed significant benefit to quality of life, agitation and overall neuropsychiatric symptoms, at reduced overall cost compared with treatment as usual. The intervention conferred a statistically significant improvement in quality of life (Dementia Quality of Life Scale – Proxy z-score of 2.82, mean difference 2.54, standard error of measurement 0.88, 95% confidence interval 0.81 to 4.28, Cohen’s d effect size of 0.24; p = 0.0042). There were also statistically significant benefits in agitation (Cohen-Mansfield Agitation Inventory z-score of 2.68, mean difference –4.27, standard error of measurement 1.59, 95% confidence interval –7.39 to –1.15, Cohen’s d effect size of 0.23; p = 0.0076) and overall neuropsychiatric symptoms (Neuropsychiatric Inventory – Nursing Home version z-score of 3.52, mean difference –4.55, standard error of measurement 1.28, 95% confidence interval –7.07 to –2.02, Cohen’s d of 0.30; p British Medical Journal e-learning module, an updated national best practice guideline and a portfolio of lay and care home outreach activities. Limitations Residents with dementia were not involved in the qualitative work. Conclusions The WHELD programme is effective in improving quality of life and reducing both agitation and overall neuropsychiatric symptoms in people with dementia in care homes. It provides a structured training and support intervention for care staff, with lower overall costs for resident care than treatment as usual. Future work It will be important to consider the long-term sustainability of the WHELD programme and cost-effective means of long-term implementation. Trial registration Current Controlled Trials ISRCTN40313497 and ISRCTN62237498. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 8, No. 6. See the NIHR Journals Library website for further project information.

Objectives Hearing-aid use may reduce risk of dementia, but cognitive impairment makes use more challenging. An observed association between reduced hearing-aid use and incident dementia could reflect either or both of these causal paths. The objective was to examine the effects of each path while minimising contamination between paths. Methods Health records data from 380,794 Veterans who obtained hearing aids from the US Veterans Affairs healthcare system were analysed. Analysis 1 (n = 72,180) used multivariable logistic regression to model the likelihood of incident dementia 3.5–5 years post hearing-aid fitting for patients free of dementia and mild cognitive impairment (MCI). Analysis 2 (n = 272,748) modelled the likelihood of being a persistent hearing-aid user at 3 years 2 months after fitting, contrasting subgroups by level of cognitive function at the time of fitting. Analysis time windows were optimized relative to dataset constraints. Models were controlled for available relevant predictors. Results The adjusted OR for incident dementia was 0.73 (95% CI 0.66–0.81) for persistent (versus non-persistent) hearing-aid users. The adjusted OR for hearing-aid use persistence was 0.46 (95% CI 0.43–0.48) in those with pre-existing dementia (versus those remaining free of MCI and dementia). Conclusion Substantial independent associations are observed in both directions, suggesting that hearing-aid use decreases risk of dementia and that better cognitive function predisposes towards persistent use. Research studying protective effects of hearing-aid use against dementia needs to account for cognitive status. Clinically, hearing devices and hearing care processes must be accessible and usable for all, regardless of their cognitive status.

BACKGROUND Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. RESULTS The study is funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie Actions – Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. CONCLUSIONS The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/38379

Background Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. Objective Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. Methods Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. Results The study is funded by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie Actions – Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. Conclusions The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. International Registered Report Identifier (IRRID) DERR1-10.2196/38379

Background Previous research has suggested that care home interactions need significant improvements, especially those between staff and residents with dementia. Reasons for the lack of interactions are staff time pressures and residents’ language impairments. Although residents may experience reduced language abilities, they can continue to communicate through other forms, including nonverbal communication and music. Person Attuned Musical Interactions (PAMI) is a staff training tool that provides staff with music therapy skill-sharing to promote high-quality interactions between staff and residents using nonverbal communication and music. The tool was originally developed in Denmark. To ensure that the tool is appropriate for UK care homes, a team of researchers in the United Kingdom have culturally adapted the tool. Objective This study aims to investigate the appropriateness of the adapted UK manual for UK care homes and to explore the impact of PAMI on residents with dementia and care staff. Methods The project consists of 2 phases, a qualitative field-testing study and a mixed methods evaluation study, which have been developed following the Medical Research Council’s guidelines for complex interventions. Care staff and residents with dementia will be recruited from care homes in Lincolnshire, where the care staff will be trained in the PAMI intervention before implementing the intervention in their daily routines. Fortnightly reflective sessions will be provided throughout the phases to provide supervision and monitoring. The qualitative methods include interviews, reflective session transcripts, diary entries, and resident experience questionnaires. The quantitative outcome measures are residents’ music engagement, staff’s dementia competence, residents’ quality of life, and staff burden. The resident’s music engagement will be administered at 9 fortnightly time points. Staff’s dementia competence, resident’s quality of life, and staff burden will be administered at preintervention and postintervention time points. Results The study has been funded by The Music Therapy Charity as part of a PhD studentship. The study began recruiting in September 2021. The research team aims to publish the results of the first phase in July to September 2023 and those of the second phase in October to December 2023. Conclusions This study will be the first to investigate the culturally adapted UK PAMI. Therefore, it will provide feedback on the appropriateness of the manual for UK care homes. The PAMI intervention has the potential to offer high-quality music intervention training to a larger population of care homes who may currently be restricted by finances, the availability of time, and a lack of training opportunities. International Registered Report Identifier (IRRID) DERR1-10.2196/43408

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

BACKGROUND Parkinson’s Disease (PD) significantly impacts the lives of people with the diagnosis and their families. Besides the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided in-person, but also online. Advantages of online peer support include that it overcomes geographical barriers, provides a form of anonymity, and support can be readily available when needed. However, the psychosocial impact of PD is still under researched and there is no systematic synthesis of online peer support for people with PD yet. OBJECTIVE (1) explore the benefits and challenges of online peer support for people with PD, and (2) identify successful elements of online peer support for people with PD. METHODS The method selected for this systematic review is a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. RESULTS 10,987 unique articles were identified through the systematic database search. Of those, 8 were included in this review. Five studies were of good/high quality, two were of medium/fair quality, and one study was of poor quality. Online platforms included discussion forums, an online virtual world, and Facebook groups. Besides one, all papers reported on text-based communication between users. Included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering use of technology. CONCLUSIONS Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or healthcare professionals. Online peer support can be a solution for those who do not have access to an in-person support group, or who’s PD symptoms restrict them to travel. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further. CLINICALTRIAL

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.

Background In 2012, Ghana ratified the United Nations Convention on the Rights of Persons with Disabilities and enacted a Mental Health Act to improve the quality of mental health care and stop human rights violations against people with mental health conditions. In line with these objectives, Ghanaian stakeholders collected data on the quality of mental health services and respect for human rights in psychiatric facilities to identify challenges and gather useful information for the development of plans aimed to improve the quality of the services offered. This study aimed to assess psychiatric facilities from different Ghanaian regions and provide evidence on the quality of care and respect of human rights in mental health services. Methods Assessments were conducted by independent visiting committees that collected data through observation, review of documentation, and interviews with service users, staff, and carers, and provided scores using the World Health Organization QualityRights Toolkit methodology. Results This study revealed significant key challenges in the implementation of the United Nations Convention on the Rights of Persons with Disabilities principles in Ghanaian psychiatric services. The rights to an adequate standard of living and enjoyment of the highest attainable standard of health were not fully promoted. Only initial steps had been taken to guarantee the right to exercise legal capacity and the right to personal liberty and security. Significant gaps in the promotion of the right to live independently and be included in the community were identified. Conclusions This study identifies shortcomings and critical areas that the Ghanaian government and facilities need to target for implementing a human rights-based approach in mental health and improve the quality of mental health care throughout the country.

Background With the rapid increase in the prevalence of dementia in the United Kingdom and beyond, the emotional, social, and economic burden on individuals, families, and health care services continues to rise. Currently, interventions that enable people living with dementia to better manage their condition and achieve a good quality of life are needed. Objective This study aimed to explore how the Promoting Independence in Dementia (PRIDE) app can promote and support the self-management of people living with mild dementia. Methods Feasibility of a pre-post study design incorporating the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework will be studied. We will use up to 6 National Health Service Trusts as research sites and the Join Dementia Research website and accept self-referrals to recruit 60 to 90 people living with mild dementia. Participants will complete the PRIDE app intervention over 8 weeks with support from a dementia adviser facilitator. Measures exploring mood, physical well-being, and quality of life will be collected at baseline and at follow-ups at 3 and 6 months. Facilitators and National Health Service staff will be invited to complete interviews shortly after the intervention phase. Results Data collection began in June 2021 and is predicted to cease by the end of August 2022. Analysis of the quantitative measures will explore the impact of the PRIDE app on participants’ independence, mood, and quality of life. Interview data will discuss participant experiences, how the use of the app affected them, and if it has the potential to be successfully implemented and maintained in dementia services. Conclusions This study will show the potential reach, effectiveness, and adoption of the PRIDE app intervention in the lives of people with mild dementia. The findings from this study will inform future research on the PRIDE app and any further developments to improve its effectiveness. International Registered Report Identifier (IRRID) DERR1-10.2196/33881

Objective: Support after a diagnosis of dementia may facilitate better adjustment and ongoing management of symptoms. The aim of the Promoting Independence in Dementia (PRIDE) study was to develop a postdiagnostic social intervention to help people live as well and as independently as possible. The intervention facilitates engagement in evidence-based stimulating cognitive, physical and social activities. Methods: Theories to promote adjustment to a dementia diagnosis, including theories of social learning and self-efficacy, were reviewed alongside self-management and the selective optimization model, to form the basis of the intervention. Analyses of two longitudinal databases of older adults, and qualitative analyses of interviews of older people, people with dementia, and their carers about their experiences of dementia, informed the content and focus of the intervention. Consensus expert review involving stakeholders was conducted to synthesize key components. Participants were sourced from the British NHS, voluntary services, and patient and public involvement groups. A tailored manual-based intervention was developed with the aim for this to be delivered by an intervention provider. Results: Evidence-based stimulating cognitive, physical, and social activities that have been shown to benefit people were key components of the proposed PRIDE intervention. Thirty-two participants including people with dementia (n=4), carers (n=11), dementia advisers (n=14), and older people (n=3) provided feedback on the drafts of the intervention and manual. Seven topics for activities were included (eg, “making decisions” and “getting your message across”). The manual outlines delivery of the intervention over three sessions where personalized profiles and plans for up to three activities are developed, implemented, and reviewed. Conclusion: A manualized intervention was constructed based on robust methodology and found to be acceptable to participants. Consultations with stakeholders played a key role in shaping the manualized PRIDE intervention and its delivery. Unlike most social interventions for dementia, the target audience for our intervention is the people with dementia themselves. Keywords: self-management, public patient involvement, behavior change, manual, cognitive impairment

Background: People over 50 are increasing their alcohol intake, potentially increasing their risk of dementia. This study investigates whether people would be willing to adhere to current UK ("low-risk") alcohol guidelines to reduce dementia risk. Methods: A national cross-sectional online survey recruited a non-probabilistic sample of 3,948 individuals aged 50 and over without dementia in the UK. Willingness to comply with low-risk guidelines was predicted using multivariate logistic regression. Relevant variables included physical health, lifestyle, and current alcohol intake. Outcomes: Majority of the sample (90%, n=3,527) reported drinking alcohol at least once a month with 23% (n=795) exceeding the low-risk guidelines (>14 units per week). A larger proportion of men, those who were overweight, and people without a partner reported drinking above the recommended level. Most people who consumed alcohol (n=2,934; 74·3%) appeared willing to adhere to low-risk guidelines if they were told that their risk of having dementia could be reduced. Increased willingness was found in women (OR 1·81; CI 1·47-2·23), in people who had at least one child (OR 1·36; CI 1·09-1·70) and those who slept well (OR 1·45; CI 1·06-2·00). People who were obese (OR 0·72; CI 0·54-0·95), those who drank alcohol above limits (OR 0·13; CI 0·11-0·16), and were smokers (OR 0·56; CI 0·36- 0·88) were less willing to adhere to current guidelines. Interpretation: Men and people with more lifestyle risk factors for common chronic diseases (e.g., smoking, obesity and excess alcohol consumption) are less willing to adhere to current alcohol low-risk guidelines to reduce dementia risk. Funding Statement: Alzheimer's Research UK. Declaration of Interests: DO has received funding from the Alzheimer’s Research UK. MO has received grants from the ESRC, NIHR and EU Commission for dementia care research. All the other authors have no conflict of interest. Ethics Approval Statement: The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. Written informed consent was obtained from all participants. All procedures involving human subjects/patients were approved by the East Midlands - Nottingham Research Ethics Committee (IRAS project ID 177280; REC reference 16/EM/0044).

Background Providing care for a family member with dementia can leave little time for carers to look after their own health needs, which makes them more susceptible to mental and physical health problems. This scoping review aimed to explore potential health benefits of interventions aimed at improving health-promoting self-care in family carers of people with dementia. Methods A scoping review was carried out using Arksey and O'Malley's methodological framework. EMBASE, MEDLINE, PsycINFO and Google Scholar were consulted. Original and peer-reviewed research published in English up to April 2017 were included. Publications were selected by two reviewers independently. Eight experts from several countries provided extra relevant information, which was triangulated with the review results. A narrative approach was used to describe and discuss the review findings. Results Seven interventions were identified. These were highly heterogeneous in content, method of delivery, and outcome measures. None was specifically focused on improving and evaluating health-promoting self-care, instead they often focused on health promotion and healthy lifestyle (eg, physical activity). Some of the multi-component interventions included "self-care" as a domain, but none used a specific measure of health-promoting self-care, so we were unable to affirm that the improvements found in the interventions were due to an improvement in this area. Interventions helped reduce carer depression and burden and increased quality of life, positive affect, and physical activity. The expert panel recommended to consider carers' preparedness and capacity to adhere to self-care practices, as well as carers' age and culture. Future interventions should be context specific, flexible, and person-centered. Conclusion Psychosocial interventions may improve health-promoting self-care behavior, but more research is needed to establish efficacy. Interventions should be flexible, use a person-centered approach, be implemented with fidelity and use the right dosage.

Background Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD. Objective This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD. Methods The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist. Results A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology. Conclusions Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.

Background A community-based occupational therapy intervention for people with mild to moderate dementia and their family carers: the Community Occupational Therapy in Dementia–UK version (COTiD-UK); and Treatment as usual (TAU) were randomly assigned to 468 pairs (each comprising a person with dementia and a family carer) in the Valuing Active Life in Dementia (VALID) randomised controlled trial (RCT). Objectives To compare the cost-utility of the COTiD-UK intervention compared to TAU, using data from the VALID RCT. Methods We performed a cost-utility analysis estimating mean costs and quality adjusted life years (QALYs) per person with dementia and carer for both treatments over a 26 weeks’ time horizon based on resource use data and utility values collected in the trial. Results Taking the National Health Service and Personal Social Services perspective, including costs and benefits to the person with dementia only, measuring Health Related Quality of Life based on Dementia Quality of Life scale (DEMQOL), accounting for missing data and adjusting for baseline values, there was a significant difference in costs between COTiD-UK and TAU (mean incremental cost for COTiD-UK £784 (95% CI £233 to £1334)), but no significant difference in outcomes (mean QALYs gained 0.00664 (95% CI -0.00404, 0.01732)). The Incremental Net Monetary Benefit (INMB) for COTiD-UK versus TAU was negative at a maximum willingness to pay for a QALY of £20000 (mean -£651, 95% CI -£878 to -£424) or £30000 (mean -£585, 95% CI -£824 to -£345). Extensive sensitivity analyses confirmed the results. Conclusions This community-based occupational therapy intervention has a very low probability of being cost-effective.

Aim Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. Method A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. Findings Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. Conclusion This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.

BACKGROUND The increasing prevalence of dementia has promoted a move toward equipping people with the skills required for greater self-management of the condition to enable a better quality of life. Self-management encompasses numerous skills, such as goal setting and decision making, which aim to improve an individual’s physical and mental well-being when they live with long-term health conditions. Effective self-management may lead to increased well-being and quality of life. Reviews of web-based and app-based interventions have suggested that they have the potential to provide self-management support for people living with a range of conditions, including dementia. OBJECTIVE The aim of this review is to explore the existing use of web-based or app-based interventions that facilitate or support self-management in dementia and discuss their effectiveness in promoting self-management and independence. METHODS A total of 5 electronic databases were systematically searched for relevant articles published between January 2010 and March 2020. Included studies were appraised using the Downs and Black checklist and the Critical Appraisal Skills Program qualitative research checklist. A narrative synthesis framework was applied using tables and conceptual mapping to explore the relationships within and among studies. RESULTS A total of 2561 articles were identified from the initial search, of which 11 (0.43%) met the inclusion criteria for the final analysis. These included 5 quantitative, 4 mixed methods, and 2 qualitative studies. All the included articles were of fair to high quality across the two appraisal measures. Interventions were delivered through a range of web-based and app-based technologies and targeted several self-management concepts. However, there was inconsistency regarding the domains, often affected by dementia, that were targeted by the interventions reviewed. CONCLUSIONS Web-based and app-based interventions for dementia can be delivered through a range of means and can target different aspects of self-management. The small number of studies included in this review report positive outcomes that seem to support the use of these interventions for people living with dementia. However, there is a clear need for more high-quality research into this type of intervention delivery and for studies that use a much larger number of participants across the dementia spectrum. Future research should consider the barriers to and facilitators of intervention adoption highlighted in this review and whether interventions can encompass the physical, social, cognitive, and emotional domains affected by dementia.

Background Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. Methods The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). Results One hundred sixty-five candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48 to 92/100. The median score for the crisis teams was 74.5 (range 67–92), and the median score for non-crisis teams was 60 (range 48–72). Conclusions With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future.

BACKGROUND There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer’s life. OBJECTIVE The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. METHODS We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. RESULTS This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. CONCLUSIONS This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. CLINICALTRIAL ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/24628

BackgroundAs the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study.MethodsThe PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. DiscussionDespite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.Trial RegistrationUnique identification number in ISRCTN registry: ISRCTN10201482 https://www.isrctn.com/ISRCTN10201482. Date registered: 12/05/2020

BACKGROUND Specialist community teams often support people with dementia who experience crisis. These teams may vary in composition and models of practice, which presents challenges when evaluating their effectiveness. A best practice model for dementia crisis services could be used by teams to improve the quality and effectiveness of the care they deliver. OBJECTIVE The aim of this study is to examine the feasibility of conducting a large-scale randomized controlled trial comparing the AQUEDUCT (Achieving Quality and Effectiveness in Dementia Using Crisis Teams) Resource Kit intervention to treatment as usual. METHODS This is a multisite feasibility study in preparation for a future randomized controlled trial. Up to 54 people with dementia (and their carers) and 40 practitioners will be recruited from 4 geographically widespread teams managing crisis in dementia. Quantitative outcomes will be recorded at baseline and at discharge. This study will also involve a nested health economic substudy and qualitative research to examine participant experiences of the intervention and acceptability of research procedures. RESULTS Ethical approval for this study was granted in July 2019. Participant recruitment began in September 2019, and as of September 2020, all data collection has been completed. Results of this study will establish the acceptability of the intervention, recruitment rates, and will assess the feasibility and appropriateness of the outcome measures in preparation for a large-scale randomized controlled trial. CONCLUSIONS There is a need to evaluate the effectiveness of crisis intervention teams for older people with dementia. This is the first study to test the feasibility of an evidence-based best practice model for teams managing crisis in dementia. The results of this study will assist in the planning and delivery of a large-scale randomized controlled trial. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/18971

OBJECTIVES: Little is known about the relationship between cognitive failures, emotional distress, and life satisfaction in late life. Experiencing cognitive failures is a known risk for declining life satisfaction in older people, although the mechanisms that may explain cognitive failures remain unclear. This study investigated the associations between psychosocial factors, cognitive failures, and coping strategies and their influence on life satisfaction in older people living in sheltered housing. METHODS: A total of 204 older people living in sheltered housing in London were recruited (mean age = 75.08 years). We used structural equation modelling path analysis to test several hypotheses based on theories of emotional distress (anxiety and depression) and cognitive failures and their influence on life satisfaction. RESULTS: Self‐reported depressive symptoms (29.5%), anxiety symptoms (33%), and cognitive failures (41%) were common. The final model had a good fit (X2 = 2.67; DF = 2; P = 0.26; NFI = 0.99, CFI = 0.99; RMSEA = 0.04); analyses showed that both cognitive failures and dysfunctional coping were significantly associated and exerted a moderate effect on emotional distress. Cognitive failures and dysfunctional coping had an indirect effect on life satisfaction through emotional distress which directly decreased levels of life satisfaction (β = −0.70, P ≤ 0.001). CONCLUSIONS: This study found that experiencing emotional distress helped to explain the association and negative effects of cognitive failures and dysfunctional coping on life satisfaction in older people living in sheltered housing. These findings contribute to our understanding of the key mechanisms of experiencing cognitive failures in late life and can help guide future interventions of well‐being in later life.

Reminiscence therapy (RT) is a popular psychosocial intervention widely used in dementia care. It involves discussion of past events and experiences, using tangible prompts to evoke memories or stimulate conversation. Areas covered: The aim of this review is to evaluate the effectiveness of RT for people with dementia. It includes studies from the specialized register of the Cochrane Dementia and Cognitive Improvement Group (ALOIS). Searches yielded 185 records of which 22 (n = 1972) were eligible for inclusion. The meta-analysis comprised of data from 16 studies (n = 1749 participants). The review included four large multicenter high-quality studies and several smaller studies of reasonable quality. Outcomes of interest were quality of life, communication, depression, and cognition at posttreatment and later follow-up. Expert commentary: RT has the potential to improve psychosocial outcomes for people with dementia. Effects are small and can be inconsistent, varying across intervention modality and setting. Individual approaches were associated with improved cognition and mood. Group approaches were linked to improved communication. The impact on quality of life appeared most promising in care home settings. Diversity in reminiscence approaches makes it difficult to compare them, and the field would benefit from the development, evaluation, use, and sharing of standardized approaches.

Background/Aims: Independence and social engagement are important outcomes for people with dementia. The aim of this study was to conduct an in-depth psychometric assessment of the Engagement and Independence in Dementia Questionnaire (EID-Q), a measure of social independence. Methods: This was an observational study at five NHS sites across England. Participants completed the EID-Q alongside additional measures. Psychometric analysis included internal consistency, test-retest reliability, convergent validity, and factor analyses. Results: A total of 225 people living with dementia completed the study. Internal consistency was excellent (α = 0.921) and the measure remained moderately stable over a 1-week period (ICC = 0.768). Significant correlations were observed between quality of life (r = 0.682) and depression (r = –0.741; both p < 0.001), indicating the importance of these concepts for wellbeing in dementia. Factor analysis indicated the presence of five factors which loaded onto a second order two-factor solution. These latent factors were named “sense of independence” and “social engagement.” Conclusions: The EID-Q demonstrated acceptable psychometric properties and the factor solution had an adequate model fit. The strong correlations suggest that social independence is strongly related to depression and quality of life. Future work will entail an analysis of responsiveness to intervention and further large-scale work.

OBJECTIVES: Dementia is expected to affect one million individuals in the United Kingdom by 2025; its prodromal phase may start decades before its clinical onset. The aim of this study is to investigate whether use of internet from 50 years of age is associated with a lower incidence of dementia over a ten-year follow-up. METHODS: We analysed data based on 8,238 dementia free (at baseline in 2002–04) core participants from the English Longitudinal Study of Ageing. Information on baseline use of internet was obtained through questionnaires; dementia casesness was based on participant (or informant) reported physician diagnosed dementia or overall score on the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). Cox proportional hazards regression analysis was used for examining the relationship between internet use and incident dementia. RESULTS: There were 301 (5.01%) incident dementia cases during the follow-up. After full multivariable adjustment for potential confounding factors, baseline internet use was associated with a 40% reduction in dementia risk assessed between 2006–12 (HR=0.60 CI: 0.42 to 0.85; p

BackgroundDementia with challenging behaviour (CB) causes significant distress for caregivers and the person with dementia. It is associated with breakdown of care at home and disruption in care homes. Challenge Demcare aimed to assist care home staff and mental health practitioners who support families at home to respond effectively to CB.ObjectivesTo study the management of CB in care homes (ResCare) and in family care (FamCare). Following a conceptual overview, two systematic reviews and scrutiny of clinical guidelines, we (1) developed and tested a computerised intervention; (2) conducted a cluster randomised trial (CRT) of the intervention for dementia with CB in care homes; (3) conducted a process evaluation of implementation of the intervention; and (4) conducted a longitudinal observational cohort study of the management of people with dementia with CB living at home, and their carers.Review methodsCochrane review of randomised controlled trials; systematic meta-ethnographic review of quantitative and qualitative studies.DesignResCare – survey, CRT, process evaluation and stakeholder consultations. FamCare – survey, longitudinal cohort study, participatory development design process and stakeholder consultations. Comparative examination of baseline levels of CB in the ResCare trial and the FamCare study participants.SettingsResCare – 63 care homes in Yorkshire. FamCare – 33 community mental health teams for older people (CMHTsOP) in seven NHS organisations across England.ParticipantsResCare – 2386 residents and 861 staff screened for eligibility; 555 residents with dementia and CB; 277 ‘other’ residents; 632 care staff; and 92 staff champions. FamCare – every new referral (n = 5360) reviewed for eligibility; 157 patients with dementia and CB, with their carer; and 26 mental health practitioners. Stakeholder consultations – initial workshops with 83 practitioners and managers from participating organisations; and 70 additional stakeholders using eight group discussions and nine individual interviews.InterventionAn online application for case-specific action plans to reduce CB in dementia, consisting of e-learning and bespoke decision support care home and family care e-tools.Main outcome measuresResCare – survey with the Challenging Behaviour Scale; measurement of CB with the Neuropsychiatric Inventory (NPI) and medications taken from prescriptions; implementation with thematic views from participants and stakeholders. FamCare – case identification from all referrals to CMHTsOP; measurement of CB with the Revised Memory and Behaviour Problems Checklist and NPI; medications taken from prescriptions; and thematic views from stakeholders. Costs of care calculated for both settings. Comparison of the ResCare trial and FamCare study participants used the NPI, Clinical Dementia Rating and prescribed medications.ResultsResCare – training with group discussion and decision support for individualised interventions did not change practice enough to have an impact on CB in dementia. Worksite e-learning opportunities were not readily taken up by care home staff. Smaller homes with a less hierarchical management appear more ready than others to engage in innovation. FamCare – home-dwelling people with dementia and CB are referred to specialist NHS services, but treatment over 6 months, averaging nine contacts per family, had no overall impact on CB. Over 60% of people with CB had mild dementia. Families bear the majority of the care costs of dementia with CB. A care gap in the delivery of post-diagnostic help for families supporting relatives with dementia and significant CB at home has emerged. Higher levels of CB were recorded in family settings; and prescribing practices were suboptimal in both care home and family settings.LimitationsFunctionality of the software was unreliable, resulting in delays. This compromised the feasibility studies and undermined delivery of the intervention in care homes. A planned FamCare CRT could not proceed because of insufficient referrals.ConclusionsA Cochrane review of individualised functional analysis-based interventions suggests that these show promise, although delivery requires a trained dementia care workforce. Like many staff training interventions, our interactive e-learning course was well received by staff when delivered in groups with facilitated discussion. Our e-learning and decision support e-tool intervention in care homes, in its current form, without ongoing review of implementation of recommended action plans, is not effective at reducing CB when compared with usual care. This may also be true for staff training in general. A shift in priorities from early diagnosis to early recognition of dementia with clinically significant CB could bridge the emerging gap and inequities of care to families. Formalised service improvements in the NHS, to co-ordinate such interventions, may stimulate better opportunities for practice models and pathways. Separate services for care homes and family care may enhance the efficiency of delivery and the quality of research on implementation into routine care.Future workThere is scope for extending functional analysis-based interventions with communication and interaction training for carers. Our clinical workbooks, video material of real-life episodes of CB and process evaluation tool resources require further testing. There is an urgent need for evaluation of interventions for home-dwelling people with dementia with clinically significant CB, delivered by trained dementia practitioners. Realist evaluation designs may illuminate how the intervention might work, and for whom, within varying service contexts.Trial registrationCurrent Controlled Trials ISRCTN02553381 (the ResCare trial) and ISRCTN58876649 (the FamCare study).FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 15. See the NIHR Journals Library website for further project information.

BACKGROUND Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology-based interventions can lead to the implementation of faulty and less suitable technology. OBJECTIVE This systematic review aims to evaluate current approaches and create best practice guidelines for involving people with dementia in developing technology-based interventions. METHODS A systematic search was conducted in January 2019 in the following databases: EMBASE (Excerpta Medica database), PsycINFO, MEDLINE (Medical Literature Analysis and Retrieval System Online), CINAHL (Cumulated Index to Nursing and Allied Health Literature), and Web of Science. The search strategy included search terms in 3 categories: dementia, technology, and involvement in development. Narrative synthesis wove the evidence together in a structured approach. RESULTS A total of 21 studies met the inclusion criteria. Most studies involved people with dementia in a single phase, such as development (n=10), feasibility and piloting (n=7), or evaluation (n=1). Only 3 studies described involvement in multiple phases. Frequently used methods for assessing involvement included focus groups, interviews, observations, and user tests. CONCLUSIONS Most studies concluded that it was both necessary and feasible to involve people with dementia, which can be optimized by having the right prerequisites in place, ensuring that technology meets standards of reliability and stability, and providing a positive research experience for participants. Best practice guidelines for the involvement of people with dementia in developing technology-based interventions are described.