Awareness, attitudes, and beliefs of dementia in Indonesia.

INTRODUCTION: Tackling dementia stigma is a policy priority. In Indonesia, we have little insight into the general public's knowledge and attitudes about dementia. METHODS: Cross-sectional study of 4430 Indonesian adults recruited from Jakarta and North Sumatra, Indonesia. Measures included dementia knowledge and attitudes. RESULTS: A total of 86.3% (n = 3,803) of adults had not heard of the terms dementia or Alzheimer's disease, and commonly viewed dementia as a normal part of aging. Being older, incorrect knowledge about etiology, not having heard of the terms dementia and/or Alzheimer's disease, having less than primary education, and being from North Sumatra were associated with more negative attitudes (p-values < 0.05). DISCUSSION: Misconceptions and lack of awareness about dementia are common in Indonesia. Attitudes tended not to be negative, but our research highlights factors associated with dementia attitudes. Future research should use this information to better tailor and target potential anti-stigma strategies. Highlights: Most Indonesians had not heard of the terms dementia and/or Alzheimer's disease and thought it was caused by normal aging.The majority of participants held mixed or positive attitudes towards dementia.A series of demographic factors alongside poor awareness were associated with negative attitudes towards dementia.

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

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

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

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

Physical Activity Patterns Within Dementia Care Dyads.

Previous research has explored the physical activity habits of people with dementia and their family carers separately, with little consideration of how physical habits are associated within dyads. In this observational study, we sought to explore the relationship between people with dementia and their carers' physical activity, at a group level and at a dyadic level. Twenty-six participant dyads (persons with dementia and their carer spouses) were asked to wear an accelerometer for 30 days continuously. Comparisons were made at a group level and a dyadic level. People with dementia did not participate in significantly more moderate to vigorous physical activity (M = 15.44 min/day; SD = 14.40) compared with carers (M = 17.95 min/day; SD = 17.01). Within dyads, there were moderately strong associations between daily moderate to vigorous physical activity (r = .48-.54), but not with overall activity levels (r = .24). Despite physical activity habits remaining relatively low within people with dementia and carers, respectively, moderate to vigorous physical activity levels appear to be correlated within dyads. Understanding mutual influence on physical activity levels within dyads is an important pathway to promote an active lifestyle.

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

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

Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial.

INTRODUCTION: Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives' sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care. METHODS AND ANALYSIS: We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1-2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation. ETHICS AND DISSEMINATION: London-Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention. TRIAL REGISTRATION NUMBER: ISRCTN13072268.

Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia.

BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Workforce resilience supporting staff in managing stress: A coherent breathing intervention for the long-term care workforce.

BACKGROUND: Staff in long-term care (LTC) homes have long-standing stressors, such as short staffing and high workloads. These stressors increased during the COVID-19 pandemic; better resources are needed to help staff manage stress and well-being. The purpose of this study was to evaluate the effect of a simple stress management strategy (coherent breathing). METHODS: We conducted a pre-post intervention study to evaluate a self-managed coherent breathing intervention from February to September 2022. The intervention included basic (breathing only) and comprehensive (breathing plus a biofeedback device) groups. Six hundred eighty-six participants were initially recruited (359 and 327 in the comprehensive and basic groups respectively) from 31 LTC homes in Alberta, Canada. Two hundred fifty-four participants completed pre-and post-intervention questionnaires (142 [55.9%] in comprehensive and 112 [44.1%] in basic). Participants were asked to use coherent breathing based on a schedule increasing from 2 to 10 min daily, 5-7 times a week over 8 weeks. Participants completed self-administered online questionnaires pre- and post-intervention to assess outcomes-stress, psychological distress, anxiety, depression, resilience, insomnia, compassion satisfaction, compassion fatigue, and burnout. We used a mixed-effects regression model to test the main effect of time (pre- and post-intervention) and group while testing the interaction between time and group and controlling for covariates. RESULTS: We found statistically significant changes from pre- to post-intervention in stress (b = -2.5, p < 0.001, 95% CI = -3.1, -1.9), anxiety (b = -0.5, p < 0.001, 95% CI = -0.7, -0.3), depression (b = -0.4, p < 0.001, 95% CI = -0.6, -0.2), insomnia (b = -1.5, p < 0.001, 95% CI = -2.1, -0.9), and resilience (b = 0.2, p < 0.001, 95% CI = 0.1, 0.2). We observed no statistically significant differences between the two intervention groups on any outcome. CONCLUSIONS: Our findings suggest that coherent breathing is a promising strategy for improving stress-related outcomes and resilience. This intervention warrants further, more rigorous testing.

The dementia severity rating scale: A potential community screening tool for dementia in low- and middle-income countries.

BACKGROUND: The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings. METHODS: Embedded within the STRiDE programme, older adults (aged ≥65 years) and their informants were randomly recruited from four sites across Indonesia and South Africa. All informants were asked to complete DSRS. We report the tool's psychometric properties and accuracy against the 10/66 short diagnostic algorithm. RESULTS: Between September and December 2021, data was collected from 2110 older adults in Indonesia and 408 in South Africa. Overall, the DSRS scores significantly differed between those with and without dementia, as identified on the 10/66 short algorithm (p < .05). The difference between groups remained significant after controlling for key factors related to older adult and informant demographics. A score >2 on the DSRS had the greatest agreement with the 10/66 short algorithm and had excellent discriminative properties in both Indonesia (Area Under Curve (AUC) = .75, 95% CIs = .72-.77) and South Africa (AUC = .82, 95% CIs = .76-.88). CONCLUSIONS: The DSRS has potential as a screening tool for dementia in middle-income countries, with high sensitivity and specificity against a standardized diagnostic algorithm.

Intellectual disabilities teaching for medical students: a scoping review.

BACKGROUND: People with intellectual disabilities are a marginalized group whose health experiences and outcomes are poor. Lack of skill and knowledge in the healthcare workforce is a contributing factor. In England, there is a new legislative requirement for mandatory intellectual disability training to be given to the existing healthcare workforce, including doctors. There is a lack of evidence about effective models of educational delivery of such training in medical schools. We undertook a scoping review to assess the range of intellectual disabilities educational interventions and their effectiveness. METHODS: We included any study from 1980 onwards which reported an educational intervention on intellectual disability, or intellectual disability and autism, for medical students from any year group. Databases searched included PUBMED, ERIC, Scopus and Web of Science as well as searches of grey literature and hand searching two journals (Medical Education and Journal of Learning Disabilities). 2,020 records were extracted, with 1,992 excluded from initial screening, and a further 12 excluded from full-text review, leaving 16 studies for inclusion. Data was extracted, quality assessed, and findings collated using narrative analysis. RESULTS: We found a variety of intervention types: classroom-based teaching, simulation, placement, home visits, and panel discussions. There was substantial variation in content. Most studies involved lived experience input. Across studies, interventions had different learning outcomes which made it difficult to assess effectiveness. Overall study quality was poor, with high use of non-validated measures, making further assessment of effectiveness problematic. CONCLUSIONS: There is a need for more consistency in intervention design, and higher quality evaluation of teaching in this area. Our review has drawn attention to the variety in teaching on this topic area and further research should focus on updating this review as curriculum changes are implemented over time.

A pragmatic, multicentre, double-blind, placebo-controlled randomised trial to assess the safety, clinical and cost-effectiveness of mirtazapine and carbamazepine in people with Alzheimer's disease and agitated behaviours: the HTA-SYMBAD trial.

Background: Agitation is common and impacts negatively on people with dementia and carers. Non-drug patient-centred care is first-line treatment, but we need other treatment when this fails. Current evidence is sparse on safer and effective alternatives to antipsychotics. Objectives: To assess clinical and cost-effectiveness and safety of mirtazapine and carbamazepine in treating agitation in dementia. Design: Pragmatic, phase III, multicentre, double-blind, superiority, randomised, placebo-controlled trial of the clinical effectiveness of mirtazapine over 12 weeks (carbamazepine arm discontinued). Setting: Twenty-six UK secondary care centres. Participants: Eligibility: probable or possible Alzheimer's disease, agitation unresponsive to non-drug treatment, Cohen-Mansfield Agitation Inventory score ≥ 45. Interventions: Mirtazapine (target 45 mg), carbamazepine (target 300 mg) and placebo. Outcome measures: Primary: Cohen-Mansfield Agitation Inventory score 12 weeks post randomisation. Main economic outcome evaluation: incremental cost per six-point difference in Cohen-Mansfield Agitation Inventory score at 12 weeks, from health and social care system perspective. Data from participants and informants at baseline, 6 and 12 weeks. Long-term follow-up Cohen-Mansfield Agitation Inventory data collected by telephone from informants at 6 and 12 months. Randomisation and blinding: Participants allocated 1 : 1 : 1 ratio (to discontinuation of the carbamazepine arm, 1 : 1 thereafter) to receive placebo or carbamazepine or mirtazapine, with treatment as usual. Random allocation was block stratified by centre and residence type with random block lengths of three or six (after discontinuation of carbamazepine, two or four). Double-blind, with drug and placebo identically encapsulated. Referring clinicians, participants, trial management team and research workers who did assessments were masked to group allocation. Results: Two hundred and forty-four participants recruited and randomised (102 mirtazapine, 102 placebo, 40 carbamazepine). The carbamazepine arm was discontinued due to slow overall recruitment; carbamazepine/placebo analyses are therefore statistically underpowered and not detailed in the abstract. Mean difference placebo-mirtazapine (-1.74, 95% confidence interval -7.17 to 3.69; p = 0.53). Harms: The number of controls with adverse events (65/102, 64%) was similar to the mirtazapine group (67/102, 66%). However, there were more deaths in the mirtazapine group (n = 7) by week 16 than in the control group (n = 1). Post hoc analysis suggests this was of marginal statistical significance (p = 0.065); this difference did not persist at 6- and 12-month assessments. At 12 weeks, the costs of unpaid care by the dyadic carer were significantly higher in the mirtazapine than placebo group [difference: £1120 (95% confidence interval £56 to £2184)]. In the cost-effectiveness analyses, mean raw and adjusted outcome scores and costs of the complete cases samples showed no differences between groups. Limitations: Our study has four important potential limitations: (1) we dropped the proposed carbamazepine group; (2) the trial was not powered to investigate a mortality difference between the groups; (3) recruitment beyond February 2020, was constrained by the COVID-19 pandemic; and (4) generalisability is limited by recruitment of participants from old-age psychiatry services and care homes. Conclusions: The data suggest mirtazapine is not clinically or cost-effective (compared to placebo) for agitation in dementia. There is little reason to recommend mirtazapine for people with dementia with agitation. Future work: Effective and cost-effective management strategies for agitation in dementia are needed where non-pharmacological approaches are unsuccessful. Study registration: This trial is registered as ISRCTN17411897/NCT03031184. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 27, No. 23. See the NIHR Journals Library website for further project information.

It is common for people with Alzheimer's disease to experience agitation, for example feeling restless or unsettled. If left untreated, agitation can lead to poorer quality of life and increased hospitalisation and strain for family carers. Often these symptoms are treated with medications that are usually used to manage psychosis (antipsychotic drugs), but such medication has limited effectiveness and can cause serious adverse effects to patients, including risk of increased death. Two medications that are already commonly prescribed for other health issues, mirtazapine (an antidepressant) and carbamazepine (a drug used to treat epilepsy), had been identified as a possible alternative way of treating agitation in Alzheimer's disease that might not have the harms associated with antipsychotic medication. In this study, we compared the effects of giving mirtazapine or carbamazepine with a dummy drug (placebo) in people with Alzheimer's disease who were experiencing agitation. The results of the study showed that neither medication was any more effective than the placebo in reducing agitation over 12 weeks in terms of improving symptoms, or in economic terms. Mirtazapine may lead to additional carer costs as compared to placebo. The study findings are stronger for mirtazapine than carbamazepine because the carbamazepine arm was stopped when it had recruited less than half the numbers needed. That was done because the study was not recruiting quickly enough to support both the mirtazapine and the carbamazepine arms. The findings from this study show that mirtazapine should not be recommended to treat agitation in Alzheimer's disease. More work is needed to formulate effective ways and to test new drug and non-drug treatments for agitation in dementia.

Protocol for the feasibility and implementation study of a model of best practice in primary care led postdiagnostic dementia care: PriDem.

INTRODUCTION: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers. METHODS AND ANALYSIS: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness. ETHICS AND DISSEMINATION: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning. TRIAL REGISTRATION NUMBER: ISRCTN11677384.

Understanding the experiences of people with dementia and their family carers participating in healthcare student dementia education: A mixed-methods evaluation from the time for dementia programme.

BACKGROUND: There is increasing awareness of the potential for positive impacts on student learning from involving people with dementia and family carers within undergraduate teaching. However, research on the experience of people with dementia and their family carers is sparse. This study aimed to evaluate the satisfaction and views of families (people with dementia and their family carers) who volunteered in Time for Dementia (TFD); an educational programme where undergraduate healthcare students visit families at home over a 2-year period. METHODS: Families taking part in TFD completed a satisfaction survey after taking part in the programme (n = 803). Frequencies of satisfaction survey items were summarised and multiple linear regression models for factors associated with total satisfaction scores were produced. Open text responses were analysed using thematic framework analysis as to the most favourable aspects of the programme and areas requiring improvement. RESULTS: Overall satisfaction was high for taking part in TFD, with a perception of contribution, and being of value. There was strong evidence that families enjoyed the experience and would recommend participation to others. Higher numbers of student visits were significantly associated with greater satisfaction. Families identified aspects of the programme that benefited them, with social interaction rating highly. Improvements suggested by the families included increased visit structure and organisational improvements. CONCLUSIONS: This study has sought to evaluate at scale the satisfaction of families taking part in a dementia education programme. It is positive that families report high satisfaction in the programme and identify perceived value for themselves as well as students, suggesting reciprocal benefits. This study contributes to the broader understanding of what Experts by Experience value when taking part in educational interventions.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants' rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

Comprehensive measurement of the prevalence of dementia in low- and middle-income countries: STRiDE methodology and its application in Indonesia and South Africa.

BACKGROUND: A core element of the Strengthening Responses to Dementia in Developing Countries (STRiDE) programme was to generate novel data on the prevalence, cost and impact of dementia in low- and middle-income countries, to build better health policy. Indonesia and South Africa are two middle-income countries in need of such data. AIMS: To present the STRiDE methodology and generate estimates of dementia prevalence in Indonesia and South Africa. METHOD: We conducted community-based, single-phase, cross-sectional studies in Indonesia and South Africa, randomly sampling participants aged 65 years or older in each country. Dementia prevalence rates for each country were generated by using the 10/66 short schedule and applying its diagnostic algorithm. Weighted estimates were calculated with national sociodemographic data. RESULTS: Data were collected between September and December 2021 in 2110 people in Indonesia and 408 people in South Africa. The adjusted weighted dementia prevalence was 27.9% (95% CI 25.2-28.9) in Indonesia and 12.5% (95% CI 9.5-16.0) in South Africa. Our results indicate that there could be >4.2 million people in Indonesia and >450 000 people in South Africa who have dementia. Only five participants (0.2%) in Indonesia and two (0.5%) in South Africa had been previously diagnosed with dementia. CONCLUSIONS: Despite prevalence estimates being high, formal diagnosis rates of dementia were very low across both countries (<1%). Further STRiDE investigations will provide indications of the impact and costs of dementia in these countries, but our results provide evidence that dementia needs to be prioritised within national health and social care policy agendas.

Factors Associated With the Quality of Life of Nursing Home Residents During the COVID-19 Pandemic: A Cross-Sectional Study.

OBJECTIVES: Quality of life (QoL) of nursing home (NH) residents is critical, yet understudied, particularly during the COVID-19 pandemic. Our objective was to examine whether COVID-19 outbreaks, lack of access to geriatric professionals, and care aide burnout were associated with NH residents' QoL. DESIGN: Cross-sectional study (July to December 2021). SETTING AND PARTICIPANTS: We purposefully selected 9 NHs in Alberta, Canada, based on their COVID-19 exposure (no or minor/short outbreaks vs repeated or extensive outbreaks). We included data for 689 residents from 18 care units. METHODS: We used the DEMQOL-CH to assess resident QoL through video-based care aide interviews. Independent variables included a COVID-19 outbreak in the NH in the past 2 weeks (health authority records), care unit-levels of care aide burnout (9-item short-form Maslach Burnout Inventory), and resident access to geriatric professionals (validated facility survey). We ran mixed-effects regression models, adjusted for facility and care unit (validated surveys), and resident covariates (Resident Assessment Instrument-Minimum Data Set 2.0). RESULTS: Recent COVID-19 outbreaks (ß = 0.189; 95% CI: 0.058-0.320), higher proportions of emotionally exhausted care aides on a care unit (ß = 0.681; 95% CI: 0.246-1.115), and lack of access to geriatric professionals (ß = 0.216; 95% CI: 0.003-0.428) were significantly associated with poorer resident QoL. CONCLUSIONS AND IMPLICATIONS: Policies aimed at reducing infection outbreaks, better supporting staff, and increasing access to specialist providers may help to mitigate how COVID-19 has negatively affected NH resident QoL.

Improving primary care based post-diagnostic support for people living with dementia and carers: Developing a complex intervention using the Theory of Change.

BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Time for Dementia: Quantitative evaluation of a dementia education programme for healthcare students.

OBJECTIVES: The future healthcare workforce needs the skills, attitudes, and empathy to better meet the needs of those with dementia. Time for Dementia (TFD) is an educational programme in which healthcare students from a range of professional groups visit a person with dementia and their family carer over a two-year period. The aim of this study was to evaluate its impact on student attitudes, knowledge and empathy towards dementia. METHODS: Measures of dementia knowledge, attitudes and empathy were administered to healthcare students at five universities in the south of England before and after (24 months) they completed the TFD programme. Data were also collected at equivalent time points for a control group of students who had not taken part in the programme. Outcomes were modelled using multilevel linear regression models. RESULTS: 2,700 intervention group students, and 562 control group students consented to participate. Students undertaking the TFD programme had higher levels of knowledge and positive attitudes at follow-up compared to equivalent students who did not undertake the programme. Our findings indicate a positive relationship between the number of visits undertaken and increasing dementia knowledge and attitudes. No substantial differences in the development of empathy was observed between groups. CONCLUSION: Our findings suggest that TFD may be effective across professional training programmes and universities. Further research into the mechanisms of action is needed.