Findings from the Promoting Independence in Dementia App (PRIDE-app) Study a Reach, Effectiveness, Adoption, Implementation, and Maintenance Framework Discussion.

INTRODUCTION: Self-management is pivotal in helping people with their independence and in managing their health conditions more effectively. The PRIDE-app is a novel online intervention, providing support and information for people living with dementia and their families, aimed at increasing self-management and improving quality of life. Knowledge generated will help inform future developments to the app, with the aim of improving its uptake and implementation in services. METHODS: A mixed-methods approach incorporating the RE-AIM framework. Recruited 25 people living with dementia, of which 17completed the PRIDE-app intervention over 8 weeks with support from a dementia adviser facilitator. Measures exploring mood, physical well-being, and quality of life were collected at baseline, 3 and 6 months and analysed through modelled analysis. Post-intervention interviews were conducted with participants and facilitators and analysed through thematic analysis. RESULTS: Quantitative results did not show significant improvements in participants' scores. Qualitative data showed that the PRIDE-app motivated people to reconnect socially and set individual goals for activities. Participants and facilitators identified areas for improvements to the app interface and delivery format. CONCLUSIONS: This study evaluated the PRIDE-app's reach, effectiveness and adoptability in the independence and quality of life of people living with dementia, as well as how it could be implemented and maintained within services. Pre- and post-intervention scores were inconclusive. Interviews provided positive feedback of the app's influence on peoples' activities and mood.

EmpRess: an eHealth implementation readiness checklist for dementia developed through an interview study of stakeholder needs.

OBJECTIVE: This study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions. METHODS: In Part 1, online semi-structured interviews with individual stakeholders (N = 9) with expertise in eHealth and dementia were conducted (response rate 83%). The Nonadoption, Abandonment, and challenges to the Scale-Up, Spread, and Sustainability of Health and care technologies (NASSS) framework was applied, both to guide the construction of the interview guide, as well as to use its subdomains as codes in the deductive qualitative thematic analysis. Respondents were industry professionals (n = 3), researchers (n = 3), policy officers (n = 2), and a clinician (n = 1). In Part 2, the items of the original ImpRess checklist were supplemented by items that covered determinants discussed in the interviews, that were not included in the original checklist. RESULTS: The main findings from the interviews included: Participants' preference for a non-dementia-specific, more general approach to the checklist; the importance of searching for shared values with implementers; and the need for more systematic monitoring of implementation. CONCLUSIONS: The EmpRess checklist applies an inclusive design approach. The checklist will help evaluate the implementation determinants of eHealth interventions for dementia and provide up-to-date information on what is, and is not, working in eHealth for dementia care.

Understanding Barriers and Facilitators to Online and App Activities for People Living With Dementia and Their Supporters.

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.

A predictive model of carer resilience in dementia family caregiving: A structural equation modelling approach.

OBJECTIVES: This study aimed to investigate the mediating effects of quality of the caregiving relationship and other carer and person with dementia variables in predicting carer resilience over time. METHOD: Carers of people with mild and moderate dementia in community settings completed baseline (n = 176 dyads) and six-month follow-up assessments (n = 139 dyads). Causal mediation analysis was conducted using Pearson Correlation and Structural Equation Modelling (SEM) to examine longitudinal predictors of carer resilience, and the effect of several mediating person with dementia, and carer factors on carer resilience over time. RESULTS: At 6-month follow-up, higher levels of carer resilience were longitudinally correlated with higher ratings of perceived relationship quality by people with dementia (r = 0.53 p ≤ 0.01), and lower levels of emotional distress symptoms by carer's (r = -0.59 p ≤ 0.01). Mediation analyses showed that people with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms (ß = -0.32, p ≤ 0.001) and carer resilience (ß = 0.53, p ≤ 0.001) over time. The final SEM provided a good fit for the data (X 2  = 0.12, p = 0.72, CFI = 1.00, NFI = 0.99, and Root Mean Square Error of Approximation = 0.001). CONCLUSION: Higher ratings of perceived relationship quality by people with dementia, and lower levels of carer emotional distress predicted higher carer resilience at follow-up. People with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms and carer resilience over time. Our findings indicate that interventions aimed at strengthening the caregiving relationship might have a protective long-term effect for carer resilience in dementia caregiving.

Attitudes towards persons with mental health conditions and psychosocial disabilities as rights holders in Ghana: a World Health Organization study.

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.

Positive psychology and attitudes to ageing in people aged 50 and over in the United Kingdom.

Objectives: The aim of this study was to investigate whether attitudes to ageing were associated with attitudes to positive psychology constructs.Methods: A cross-sectional online survey of 572 UK adults aged 50+ (mean age 64.6 years, SD = 8.4, 73.8% female) assessed attitudes to ageing using the Attitudes to Ageing Questionnaire (AAQ) in relation to measures of positive psychology including (1) belief in a just world-Just World Scale (JWS-Self and JWS-Other), (2) sense of coherence-Sense of Coherence Scale (SOC) and (3) positive well-being-Control, Autonomy, Self-Realization, and Pleasure Scale (CASP-19). Other factors included difficulties with hearing and eyesight, relative and carer status and demographics.Results: People with hearing and eyesight difficulties had lower CASP-19 and SOC scores, and more negative attitudes to ageing compared to people without sensory problems. Hierarchical regression analyses showed all three positive psychology scales predicted more positive attitudes to ageing. Being a carer for a person with dementia was associated with more negative attitudes to ageing.Conclusion: Whereas health and sensory problems relate to more negative attitudes to ageing, this study highlights the importance of positive psychological factors which could inform approaches seeking to promote well-being and health in older people.

Dementia Early-Stage Cognitive Aids New Trial (DESCANT) of memory aids and guidance for people with dementia: randomised controlled trial.

BACKGROUND: Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE: To investigate effects of memory aids and guidance by dementia support practitioners (DSPs) for people in early-stage dementia through a pragmatic, randomised controlled trial. METHODS: Of 469 people with mild-to-moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) Score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; S-MMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS: DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS Score increased to 14.6 (SD: 10.4) in intervention and 12.6 (SD: 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between-group difference was 0.38 (95% CI: -0.89 to 1.65, p=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS: This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers. TRIAL REGISTRATION NUMBER: Current Controlled Trials ISRCTN12591717.

Dementia and hearing-aid use: a two-way street.

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.

Psychological treatments for depression and anxiety in dementia and mild cognitive impairment.

BACKGROUND: Experiencing anxiety and depression is very common in people living with dementia and mild cognitive impairment (MCI). There is uncertainty about the best treatment approach. Drug treatments may be ineffective and associated with adverse effects. Guidelines recommend psychological treatments. In this updated systematic review, we investigated the effectiveness of different psychological treatment approaches. OBJECTIVES: Primary objective To assess the clinical effectiveness of psychological interventions in reducing depression and anxiety in people with dementia or MCI. Secondary objectives To determine whether psychological interventions improve individuals' quality of life, cognition, activities of daily living (ADL), and reduce behavioural and psychological symptoms of dementia, and whether they improve caregiver quality of life or reduce caregiver burden. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases, and three trials registers on 18 February 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared a psychological intervention for depression or anxiety with treatment as usual (TAU) or another control intervention in people with dementia or MCI. DATA COLLECTION AND ANALYSIS: A minimum of two authors worked independently to select trials, extract data, and assess studies for risk of bias. We classified the included psychological interventions as cognitive behavioural therapies (cognitive behavioural therapy (CBT), behavioural activation (BA), problem-solving therapy (PST)); 'third-wave' therapies (such as mindfulness-based cognitive therapy (MBCT)); supportive and counselling therapies; and interpersonal therapies. We compared each class of intervention with control. We expressed treatment effects as standardised mean differences or risk ratios. Where possible, we pooled data using a fixed-effects model. We used GRADE methods to assess the certainty of the evidence behind each result. MAIN RESULTS: We included 29 studies with 2599 participants. They were all published between 1997 and 2020. There were 15 trials of cognitive behavioural therapies (4 CBT, 8 BA, 3 PST), 11 trials of supportive and counselling therapies, three trials of MBCT, and one of interpersonal therapy. The comparison groups received either usual care, attention-control education, or enhanced usual care incorporating an active control condition that was not a specific psychological treatment. There were 24 trials of people with a diagnosis of dementia, and five trials of people with MCI. Most studies were conducted in community settings. We considered none of the studies to be at low risk of bias in all domains.  Cognitive behavioural therapies (CBT, BA, PST) Cognitive behavioural therapies are probably slightly better than treatment as usual or active control conditions for reducing depressive symptoms (standardised mean difference (SMD) -0.23, 95% CI -0.37 to -0.10; 13 trials, 893 participants; moderate-certainty evidence). They may also increase rates of depression remission at the end of treatment (risk ratio (RR) 1.84, 95% CI 1.18 to 2.88; 2 studies, with one study contributing 2 independent comparisons, 146 participants; low-certainty evidence). We were very uncertain about the effect of cognitive behavioural therapies on anxiety at the end of treatment (SMD -0.03, 95% CI -0.36 to 0.30; 3 trials, 143 participants; very low-certainty evidence). Cognitive behavioural therapies probably improve patient quality of life (SMD 0.31, 95% CI 0.13 to 0.50; 7 trials, 459 participants; moderate-certainty evidence) and activities of daily living at end of treatment compared to treatment as usual or active control (SMD -0.25, 95% CI -0.40 to -0.09; 7 trials, 680 participants; moderate-certainty evidence). Supportive and counselling interventions Meta-analysis showed that supportive and counselling interventions may have little or no effect on depressive symptoms in people with dementia compared to usual care at end of treatment (SMD -0.05, 95% CI -0.18 to 0.07; 9 trials, 994 participants; low-certainty evidence). We were very uncertain about the effects of these treatments on anxiety, which was assessed only in one small pilot study. Other interventions There were very few data and very low-certainty evidence on MBCT and interpersonal therapy, so we were unable to draw any conclusions about the effectiveness of these interventions. AUTHORS' CONCLUSIONS: CBT-based treatments added to usual care probably slightly reduce symptoms of depression for people with dementia and MCI and may increase rates of remission of depression. There may be important effect modifiers (degree of baseline depression, cognitive diagnosis, or content of the intervention). CBT-based treatments probably also have a small positive effect on quality of life and activities of daily living. Supportive and counselling interventions may not improve symptoms of depression in people with dementia. Effects of both types of treatment on anxiety symptoms are very uncertain. We are also uncertain about the effects of other types of psychological treatments, and about persistence of effects over time. To inform clinical guidelines, future studies should assess detailed components of these interventions and their implementation in different patient populations and in different settings.

A cross sectional survey on UK older adult's attitudes to ageing, dementia and positive psychology attributes.

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.

A nationwide evaluation study of the quality of care and respect of human rights in mental health facilities in Ghana: results from the World Health Organization QualityRights initiative.

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.

Motivation and willingness to increase physical activity for dementia risk reduction: Cross-Sectional UK survey with people aged 50 and over.

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 status were more physically active. Those who exercised less and 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.

Implementing the Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: mixed-method process evaluation alongside a pragmatic randomised trial.

OBJECTIVES: The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package designed to improve the cognitive abilities, function and well-being of people with early-stage dementia and their carers, by providing a range of memory aids, together with appropriate training and support. This sub-study aimed to assess implementation and identify contextual factors potentially associated with participant outcomes. METHOD: A mixed-methods approach was adopted alongside the pragmatic randomised trial. Data were obtained from intervention records and interviews with five dementia support practitioners across seven National Health Service Trusts in England and Wales. A reporting framework was constructed from available literature and data assessed by descriptive statistics and thematic analysis. RESULTS: Participation and engagement was high with 126 out of 128 participants completing the intervention with packages tailored to individual participants. Misplacing items and poor orientation to date and time were common areas of need. Memory aids frequently supplied included orientation clocks (91%), whiteboards (60%), calendars (43%) and notebooks (32%), plus bespoke items. Intervention duration and timing were broadly consistent with expectations. Variation reflected participants' needs, circumstances and preferences. Qualitative findings suggested a potentially positive impact on the well-being of people with dementia and their carers. Issues associated with successful roll-out of the intervention are explored in the discussion. CONCLUSION: Successful implementation increased confidence in future findings of the randomised trial. Depending on these, DESCANT may prove a scalable intervention with potential to improve the function and quality of life of people with dementia and their carers.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

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

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

The Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: A goal attainment scaling approach to promote self-management.

OBJECTIVES: This study investigated goals identified by people with dementia and their carers to promote the self-management of symptoms and abilities; measured achievement using goal attainment scaling (GAS); and explored the reflections of Dementia Support Practitioners (DSPs) facilitating it. METHODS AND DESIGN: Within this pragmatic randomised trial, DSPs gave memory aids, training and support to people with mild to moderate dementia and their carers at home. Data were collected across seven NHS Trusts in England and Wales (2016-2018) and abstracted from intervention records and semi-structured interviews with DSPs delivering the intervention, supplemented by a subset of the trial dataset. Measures were created to permit quantification and descriptive analysis and interview data thematically analysed. A GAS measure for this intervention in this client group was derived. RESULTS: Engagement was high across the 117 participants and 293 goals were identified. These reflected individual circumstances and needs and enabled classification and assessment of their attainment. Seventeen goal types were identified across six domains: self-care, household tasks, daily occupation, orientation, communication, and well-being and safety. On average participants achieved nominally significant improvement regarding the specified goals of 1.4 with standard deviation of 0.6. Five interviews suggested that DSPs' experiences of goal setting were also positive. CONCLUSIONS: GAS is useful for assessing psychosocial interventions for people with early-stage dementia. It has a utility in identifying goals, promoting self-management and providing a personalised outcome measure. There is a strong case for exploring whether these clear benefits translate to other interventions in other populations in other places.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia.

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.

Exploring the Role of Web-Based Interventions in the Self-management of Dementia: Systematic Review and Narrative Synthesis.

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.

Field-testing an iCST touch-screen application with people with dementia and carers: a mixed method study.

OBJECTIVES: To test the individual Cognitive Stimulation Therapy (iCST) application with people with dementia and carers in order to modify and refine the application, and improve its usability. In an iterative development process, two different prototypes were used to elicit the subjects' views and preferences. This application may address the current need for more innovative approaches to support people with dementia and their carers. METHODS: An opportunistic sample of 13 people with dementia and 13 carers participated in four focus groups and ten semi-structured interviews to obtain feedback in key areas, including the layout and content of the application, and the experience of its use as a dyad. Data were audio-recorded, transcribed and analysed thematically. An additional 18 people with dementia and 16 carers completed a short usability and acceptability questionnaire regarding a subsequent version of the iCST application prototype. RESULTS: Most participants expressed enthusiasm about the iCST application, its usability, design, and content. Participants highlighted the importance of adaptability to individual preferences, indicating a need for a wider range of activities and flexibility in the use of the application. Furthermore, participants reported perceived benefits, including mental stimulation, quality time spent together, and enjoyment. The application was rated slightly better by carers than people with dementia in terms of usability and acceptability. CONCLUSIONS: This study gives insights from people with dementia and carers concerning the usability, feasibility, and perceived benefits of the iCST application. The feedback will be incorporated in an updated version of the iCST application for commercial release.

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto.

OBJECTIVE: To provide a new perspective on integrated biomedical and psychosocial dementia research. BACKGROUND: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. HYPOTHESES: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. MANIFESTO: We provide a Manifesto on how to significantly move forward the dementia research agenda.