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Neuropsychiatric symptoms (NPS) in dementia can be reduced through music listening. Little has been reported on home-based listening, compilation processes, or individual responses that include biophysiological data. We aim to provide new insights from two home-based case studies focused on specific music selections. Participants were part of a larger study, co-designing an automated radio, diary reminder and personal playlist system for NPS management. Playlists were compiled that would have the best possible chance of achieving this, based on participants' autobiographical, narrative, heart rate (HR) and videoed responses. Participant's responses to their music aligned with the genre they chose - dancing to up-beat music, contrasting with subtle responses to Beethoven. Repeated listens may help to establish consistency of responses and allow time to communicate their genuine preferences, not those others suggested. If all of these data converge, then they could help confirm the suitability of music for NPS management., Competing Interests: Declaration of competing interest All the authors of this article declare no conflicts of interest., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Reducing stigma is a key benefit to intergenerational programs. However, little is known about the availability and suitability of measures that capture dementia-related attitudes in adolescents, thus limiting interpretations of the efficacy of such programs. The aim of this scoping review was to provide an overview of outcome measures used to capture dementiarelated attitudes in adolescents. Scoping review methodology was used to systematically identify relevant articles. Key search terms included dementia, attitudes, and adolescents. Fourteen studies met the inclusion criteria, of which 13 unique measures were identified. However, there are gaps in psychometric properties and a lack of underlying theoretical frameworks., Competing Interests: Disclosure statement No potential conflict of interest was reported by the author(s).

Objectives: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context., Methods: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12., Results: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors., Conclusions: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya., (© 2024 John Wiley & Sons Ltd.)

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., Competing Interests: None to declare. Author disclosures are available in the supporting information., (© 2024 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult., Methods: A Delphi process involving eight clinical and academic experts provided prevalence estimates of dementia within India, split by sex and age. The experts were also asked to estimate the number of people potentially living at different stages of the condition. A priori criteria were used to ascertain the point in which consensus was achieved., Results: Our consensus estimates generated a dementia prevalence of 2.8% (95% CI = 1.9 to 3.6) for those aged 60 years and above in India. Consensus was achieved across age and sex prevalence estimates, with the exception of one (females aged 60-64). Our experts estimated that 42.9% of people living with dementia in India had a mild severity., Conclusions: The findings indicate that there could be approximately 3.9 million people living with dementia in India, of which 1.7 million could be living with dementia of mild severity. Such estimates can better help researchers and policy makers to estimate the true cost and impact of dementia in India and can inform resource allocation decisions., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the landscape of needs and services available, and provides an evidence base to inform priority-setting for strengthening responses to dementia in South Africa. This situational analysis was conducted in three phases: (1) a desk review guided by a comprehensive topic guide which includes the WHO's Global Dementia Observatory indicators; (2) multi-sectoral stakeholder interviews to verify the secondary sources used in the desk review, and to identify gaps and opportunities in policy and service provisions; and (3) a SWOT-analysis examining the strengths, weaknesses, opportunities and threats in current care and support provisions in South Africa. Our findings highlight the gaps and opportunities with current service provision and show how structural factors create barriers to diagnosis, support, and care. There is an urgent need for intersectoral policy responses to support and strengthen current health, social care, and long-term support systems so that people living with dementia and their families can live and age well. This paper forms part of a larger study on strengthening responses to dementia (The STRIDE project)., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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.

Background: Dementia stigma has adverse effects on people with dementia and their carers. These effects can lead to poor quality of life among other negative impacts., Objective: The aim of this study is to develop and pilot a novel dementia stigma reduction intervention in rural Kenya, leveraging existing Community Health Workers (CHWs) for its delivery., Methods: The pre-post pilot study was conducted, utilizing a parallel mixed-methods design. Ten CHWs were trained to deliver a contextually developed dementia anti-stigma intervention. These CHWs delivered four workshops to 59 members of the general public in Makueni County, with each workshop lasting between 1.5 to 2 hours. Focus group discussions and pre/post surveys were used as measures., Results: The intervention was well received amongst the participants, particularly in terms of its format and accessibility. We observed the largest effects in reducing negative beliefs related to treatment (η2 = 0.34), living well with dementia (η2 = 0.98), and care (η2 = 0.56) for the general public post intervention. Improvements to attitudes were also observed in the CHWs, but the effect sizes were typically smaller., Conclusions: The intervention was accessible and feasible in rural Kenya, while also showing preliminary benefits to stigma related outcomes. The findings indicate that culturally sensitive interventions can be delivered in a pragmatic and context specific manner, thus filling an important knowledge gap in addressing stigma in low-resource settings. Future research is needed to ascertain the intervention's long-term benefits and whether it tackles important behavioral outcomes and beliefs deeply ingrained within communities.

Introduction: In Kenya, there is a lack of data on the number of people with dementia. In this article, we aim to estimate the number of community-dwelling older adults (aged 60 years and above) that are potentially living with dementia in rural Kenya., Methods: Recruitment of older adults occurred through adopting a convenience approach based on the catchment areas served by ten trained community health workers. Screening was conducted using the Brief Community Screening Instrument for Dementia (CSI-D), in which prevalence ratios were reported. Regression analyses were run to understand the association between screening outcome and wellbeing, social isolation, and employment status (adjusted for age, sex, literacy, geography, and social status)., Results: Of the 3,546 older adults who were screened for dementia, 652 screened positive (PR = 0.18, 95% CIs: 0.17-0.20). Back estimating screen positives based on established sensitivity and specificity of the tool against a gold standard (clinical diagnosis), yielded a prevalence of 9.4% (0.09, 95% CIs: 0.08-0.11). Screening positive for dementia was associated with poorer quality of life (B = -0.17, p &lt; 0.001) and loneliness (B = 0.28, p &lt; 0.001)., Conclusion: There are potentially 258,000 older adults living with dementia in Kenya, who likely have poorer outcomes. We need to encourage a timely diagnosis and develop better ways to support people living with dementia in Kenya and other resource-limited settings., (© 2024 The Author(s). Published by S. Karger AG, Basel.)

Background: Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context., Aims: This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia., Materials and Methods: This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts., Results: Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis., Discussion: A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising., Conclusion: In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience., (© 2023 John Wiley & Sons Ltd.)

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.

Background: The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts., Aims: We aimed to characterise experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia., Method: We analysed data from 704 people living with dementia who took part in a global survey from 33 different countries and territories. Psychometric properties were examined, including internal consistency and construct validity., Results: A total of 83% of participants reported discrimination in one or more areas of life, and this was similar across WHO Regions. The exploratory factor analysis factor loadings and scree plot supported a unidimensional structure for the Discrimination and Stigma Scale Ultra Short for People Living with Dementia (DISCUS-Dementia). The instrument demonstrated excellent internal consistency, with most of the construct validity hypotheses being confirmed and qualitative responses demonstrating face validity., Conclusions: Our analyses suggest that the DISCUS-Dementia performs well with a global sample of people living with dementia. This scale can be integrated into large-scale studies to understand factors associated with stigma and discrimination. It can also provide an opportunity for a structured discussion around stigma and discrimination experiences important to people living with dementia, as well as planning psychosocial services and initiatives to reduce stigma and discrimination.

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.

This study aimed to understand stigma in relation to people living with dementia in Sao Paulo, Brazil. Critical Narrative Inquiry methodology was used. Semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Inductive and deductive techniques were used. The latter was informed by Link and Phelan's (2001) sociological theory of stigma. Dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their caring experiences, rather than to cause harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding 'obedience', and restricting their freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred care for carers in Brazil., Competing Interests: Conflict of interest The authors declare no conflict of interest.

Background: In Kenya, many people are currently living with dementia without a formal diagnosis or support; often attributing symptoms to normal aging or as a consequence of past behaviors. Dementia screening is not commonplace within Kenya. Improving the supply (or opportunity) of dementia screening within the region may promote uptake, thus leading to more people to seek a formal diagnosis and subsequently receive support within the Kenyan healthcare system. Community Healthcare Workers (CHWs) have successfully demonstrated their value in delivering health interventions within Kenya and have strong links within local communities., Objective: To integrate and evaluate a community-level dementia screening program among older adults in rural Kenya., Methods: Through leveraging this resource, we will deliver dementia screening to older adults (≥60 years) within Makueni County, Kenya over a 6-month period. Here, we present a protocol for the process evaluation of a dementia screening program in Kenya - DEM-SKY. The process evaluation seeks to understand the adoption, implementation, continuation, and implementation determinants, using quantitative and qualitative measures., Conclusions: Gaining perspectives of different participants involved in the program (i.e., older adults, CHWs, hospital staff, and trainers), will ensure that we understand the reason for successful (or unsuccessful) delivery of DEM-SKY.

Quality of life is an important outcome in older-adult care. Measuring resident quality of life may offer ways to improve it and to improve quality of care. However, in the UK quality of life is rarely measured as a part of routine care. Our study aimed to understand the views of care home staff about using a quality of life instrument as a part of routine care in order to support its implementation into routine practice. In a qualitative study, we conducted 35 interviews with care home staff and two focus groups with four care home managers from three care homes in East Sussex, England. Data were collected between September 2015 and February 2016. Care staff and managers were aged on average 40 (SD = 12.2) and 43.7 (SD = 14.4) years and had worked in the care sector an average of 11.4 (SD = 10.2) and 23.7 (SD = 14.1) years, respectively. Participants were predominantly female and white British. Interviews and focus groups were analysed using thematic analysis. Findings identified two overarching themes of 'Perceived gains' and 'Implementation'. Overall, there was a lot of positivity towards using a quality of life instrument in routine practice. This positivity was an important feature in how the instrument was perceived as fitting into practice. Participants identified several barriers and discussed how to overcome them. Results from the study demonstrate that routine measurement of quality of life is positively received by care staff. They believed that measuring quality of life as a part of care practice could lead to improvements in resident quality of life, staff knowledge and understanding and care practices. The findings suggest that routinely measuring quality of life as a part of normal care could also have more far-reaching effects on the provision of person-centred care provided by care staff., (© 2022 John Wiley & Sons Ltd.)

Elder abuse is globally considered a hidden problem with great variations in its conceptualization across cultures, non-uniformity in understanding, and manifestations of abuse and neglect. Currently, there are no validated or culturally adapted screening measures for elder abuse in South Africa. The aim of this study was to test the cultural appropriateness of the Elder Abuse Screening Tool (EAST) and the Caregiver Abuse Screen (CASE) in two regions and four languages in South Africa. Using a cognitive interviewing methodology, 23 carers and 19 older adults were interviewed. Findings show that questions in the EAST and CASE are generally well understood, but that adaptations of both tools are necessary for use within South Africa. Fear, knowledge, and experience of crime also showed that strangers, like family, deliberately use deception to build trust and abuse. Further validation is needed to determine suitable scoring and use by health and social care practitioners.

India is the world's second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia ( n = 8), caregivers ( n = 19), health care professionals ( n = 16) and the general public ( n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia.

Objectives: To examine the costs and cost-effectiveness of mirtazapine compared to placebo over 12-week follow-up., Design: Economic evaluation in a double-blind randomized controlled trial of mirtazapine vs. placebo., Setting: Community settings and care homes in 26 UK centers., Participants: People with probable or possible Alzheimer's disease and agitation., Measurements: Primary outcome included incremental cost of participants' health and social care per 6-point difference in CMAI score at 12 weeks. Secondary cost-utility analyses examined participants' and unpaid carers' gain in quality-adjusted life years (derived from EQ-5D-5L, DEMQOL-Proxy-U, and DEMQOL-U) from the health and social care and societal perspectives., Results: One hundred and two participants were allocated to each group; 81 mirtazapine and 90 placebo participants completed a 12-week assessment (87 and 95, respectively, completed a 6-week assessment). Mirtazapine and placebo groups did not differ on mean CMAI scores or health and social care costs over the study period, before or after adjustment for center and living arrangement (independent living/care home). On the primary outcome, neither mirtazapine nor placebo could be considered a cost-effective strategy with a high level of confidence. Groups did not differ in terms of participant self- or proxy-rated or carer self-rated quality of life scores, health and social care or societal costs, before or after adjustment., Conclusions: On cost-effectiveness grounds, the use of mirtazapine cannot be recommended for agitated behaviors in people living with dementia. Effective and cost-effective medications for agitation in dementia remain to be identified in cases where non-pharmacological strategies for managing agitation have been unsuccessful.

Older adults with cognitive impairment have deficits in executive systems that affect their gait automaticity. The aim of the meta-analysis and systematic review was to examine the effects of interventions focus on only motor learning principles on gait performance and physical functions (e.g., dynamic balance). After inspections of 879 articles, 11 relevant studies were selected for systematic review and meta-analysis. The PEDro scale and Modified Downs and Black checklist were used to assess the quality of studies, and a random-effect model was used at a 95% confidence interval for calculating pooled effect sizes. The results of this systematic review and meta-analysis showed that motor learning interventions increased gait speed, cadence, stride length, and reduced gait cognitive cost but did not affect gait variability and physical function. In conclusion, practitioners should pay attention more to the potential benefits of motor learning interventions in rehabilitating older adults with cognitive impairment.

Introduction: Stigma and discrimination among healthcare workers can hinder diagnosis and the provision of appropriate care in dementia. This study is aimed at developing, delivering and evaluating the feasibility of a group antistigma intervention to improve knowledge, attitudes and behaviours in relation to people living with dementia among community health workers (CHWs)., Methods and Analysis: This will be a randomised controlled feasibility trial conducted with 150 CHWs from 14 primary care units (PCUs) in São Paulo, Brazil. PCUs will be randomly allocated (1:1) in two parallel groups-experimental group or control group. Participants from PCUs allocated to the experimental group will receive a 3-day group intervention involving audio-visual and printed materials as well as elements of social contact. The control group will keep their usual routine. Knowledge, attitude and intended behaviour stigma-based outcomes will be assessed at baseline and at follow-up (30 days after intervention) to both groups, with additional questions on feasibility for the experimental group at follow-up. Around 10-15 participants will take part in follow-up semistructured interviews to further explore feasibility. Quantitative analyses will follow an 'intention to treat' approach. Qualitative data will be analysed using content analysis., Ethics and Dissemination: This study was approved by the National Commission for Ethics in Research in Brazil (n. 5.510.113). Every participant will sign a consent form. Results will be disseminated through academic journals and events related to dementia. The intervention materials will be made available online., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Background: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and explore factors associated with changes in HRQL over a one-year period. We used data from the MODEM longitudinal cohort study which recruited dyads of persons with clinically diagnosed dementia and their principal carer and interviewed them face-to-face at baseline and again 1 year later., Methods: Quota sampling was used to generate balanced numbers (target n = 100 for each severity level) of people with mild cognitive impairment (20+ on the standardised Mini-Mental State Examination (sMMSE)), moderate cognitive impairment (score 10 to 19), and severe cognitive impairment (score 0 to 9). Persons with dementia without an identifiable family carer or other informant (e.g., a formal/professional/paid carer) were excluded from the study. Participants answered a series of questions measuring their HRQL: DEMQOL, DEMQOL-proxy, EQ-5D-3 L, EQ-5D-3L proxy. Multiple regression models were built to understand the effects of baseline demographics and dementia symptoms (cognitive impairment, neuropsychiatric symptoms) on change in HRQL over 1 year., Results: Two hundred and forty-three dyads of people with clinically diagnosed dementia and carers completed baseline and follow-up interviews. Most measures of HRQL remaining relatively stable between time-points, but one index of HRQL, EQ-5D proxy, significantly declined. Depending on the HRQL measure, different factors were associated with change in HRQL. The only factor consistently associated with decline in HRQL (when compared to improvement) was having a diagnosis of a non-Alzheimer's dementia., Conclusions: Deterioration in HRQL is not an inevitable part of the dementia journey. However, people with non-Alzheimer's dementias may be more susceptible to HRQL decline. This may indicate that those with non-Alzheimer's dementia may benefit from specific support focussed on maintaining their quality of life., (© 2022. The Author(s).)

Cross-cultural adaptation is an important part of using validated questionnaires across countries and settings. Here we describe the cross-cultural process adopted in the STRiDE (STrengthening Responses to dementia in DEveloping countries) program. We adopted a cross-cultural adaptation process including forward translation, back translations, and cognitive interviews of the STRiDE toolkit. In total, 50 older adults and 41 carers across sites in Indonesia and South Africa participated in cognitive interviews; field notes and verbatim quotes are reported. We describe the cross-cultural adaptation process of the STRiDE toolkit. During the process, issues were identified with the translated toolkit, including aspects related to cultural appropriateness, terminology equivalence, and timings. The data demonstrate that a rigorous, yet pragmatic, cross-cultural adaptation process can be achieved even with limited resources. Our process should help the design and conduct of future dementia research in various contexts., Competing Interests: There are no conflicts of interest to declare., (© 2022 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.)

Objectives: The COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers., Design: Our mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia., Setting: The study took place in the South-East of England., Participants: Existing study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations., Measurement: Interviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis., Results: 16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns., Conclusions: Our study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

The A-ADS is one the first validated measures of attitudes of dementia in adolescents, though further validation is needed. 630 adolescents were recruited from secondary schools in England. A Principal Component Analysis was completed ( n = 230) followed by a Confirmatory Factor Analysis ( n = 400). Reducing the A-ADS into a single factor, 13-item measure (Brief A-ADS) improved the model fit of the measure (χ 2 = 182.75, DF = 65, CMIN/DF = 2.81, p  < 0.001, CFI = 0.90, RMSEA = 0.07). The scale demonstrated good internal consistency, good predictive and concurrent validity. Building on the validation of the A-ADS, the Brief A-ADS is suitable to capture attitudes towards dementia amongst adolescents.

Introduction: COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study., Methods: We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer., Results: 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers., Discussion: It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period., Competing Interests: The authors have declared that no competing interests exisit.

Background: The suspension of memory services during the COVID-19 pandemic delayed dementia diagnosis and access to early intervention. Some services responded to the challenge by developing a remote memory assessment pathway to comply with reduced social contact measures to protect vulnerable patients. The aim of the study was to establish whether remote model is considered a satisfactory experience within the context of the COVID-19 pandemic and to understand the factors associated with patient and carer satisfaction of remote pathway., Method: 73 participants recruited from patients referred to memory clinic in West Sussex, who were assessed over a video or telephone. Participants completed an 11-item questionnaire capturing satisfaction across a range of elements, contextual items (the impact of the pandemic, loneliness, previous experience of using teleconference technology and diagnosis), as well as 3 dimensions from Patient Experience Questionnaire. Descriptive statistics are reported at a whole sample level, separated by patient and carer status. A hypothesis driven set of bivariate analyses (Spearman's rank) was used to understand the association between overall satisfaction and key independent factors across the whole sample., Results: 73 participants were typically older adults (M=68.5, SD=13.3) and female (n=40, 54.8%). The patient was more likely to be older, feel lonely within the past week and to have used video call software when compared to the carer (p> 0.05). Participants were generally satisfied with the remote pathway with 95.8% (n=69) agreeing or strongly agreeing with the statement "Overall, I was satisfied with the assessment". Patients and carers did not significantly differ on any satisfaction response, apart from the ease of use of technology, in which carers were more likely to find the technology easy to use (U= 432.5; p=0.01). Worry about contracting COVID and communication experience was positively associated with overall satisfaction, whilst perceived communication barriers were significantly negatively associated with overall satisfaction., Conclusions: Remote memory assessment was a positive and satisfactory experience for most patient and carers. The remote pathway should be considered as an option available during and beyond the pandemic to improve access and patient choice of assessment modality., (© 2021 the Alzheimer's Association.)

Objectives: We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya., Methods: A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data., Findings: Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse., Conclusions: We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally.

Background: Agitation is common in people with dementia and negatively affects the quality of life of both people with dementia and carers. Non-drug patient-centred care is the first-line treatment, but there is a need for other treatment when this care is not effective. Current evidence is sparse on safer and effective alternatives to antipsychotics. We assessed the efficacy and safety of mirtazapine, an antidepressant prescribed for agitation in dementia., Methods: This parallel-group, double-blind, placebo-controlled trial-the Study of Mirtazapine for Agitated Behaviours in Dementia trial (SYMBAD)-was done in 26 UK centres. Participants had probable or possible Alzheimer's disease, agitation unresponsive to non-drug treatment, and a Cohen-Mansfield Agitation Inventory (CMAI) score of 45 or more. They were randomly assigned (1:1) to receive either mirtazapine (titrated to 45 mg) or placebo. The primary outcome was reduction in CMAI score at 12 weeks. This trial is registered with ClinicalTrials.gov, NCT03031184, and ISRCTN17411897., Findings: Between Jan 26, 2017, and March 6, 2020, 204 participants were recruited and randomised. Mean CMAI scores at 12 weeks were not significantly different between participants receiving mirtazapine and participants receiving placebo (adjusted mean difference -1·74, 95% CI -7·17 to 3·69; p=0·53). The number of controls with adverse events (65 [64%] of 102 controls) was similar to that in the mirtazapine group (67 [66%] of 102 participants receiving mirtazapine). However, there were more deaths in the mirtazapine group (n=7) by week 16 than in the control group (n=1), with post-hoc analysis suggesting this difference was of marginal statistical significance (p=0·065)., Interpretation: This trial found no benefit of mirtazapine compared with placebo, and we observed a potentially higher mortality with use of mirtazapine. The data from this study do not support using mirtazapine as a treatment for agitation in dementia., Funding: UK National Institute for Health Research Health Technology Assessment Programme., Competing Interests: Declaration of interests SB reports personal fees and non-financial support from Lilly; personal fees from Boehringer-Ingelheim, Axovant, Lundbeck, and Nutricia; and honoraria from the Hamad Medical Service for lectures and talks; outside the submitted work. He is a Trustee of the Alzheimer's Society and has research grants from UK National Institute for Health Research (NIHR), Economic and Social Research Council, and Engineering and Physical Sciences Research Council. AB reports being National Clinical Director for Dementia at NHS England and receiving professional fees from NHS England, personal fees from International Journal of Geriatric Psychiatry, personal fees from lectures and talks and from medico-legal reports and the Driver and Vehicle Licensing Authority, outside the submitted work. CB reports grants and personal fees from Acadia, Lundbeck; personal fees from Roche, Otsuka, Novartis, Eli Lilly, Suven, Sunovion, ADDEX, and Exciva; personal fees and travel expenses from Synexus, Novo Nordisk; and travel expenses from Biogen; outside the submitted work. PB reports work as a paid consultant for TauRx Therapeutics outside the submitted work. RH reports grant support from NIHR and being a Trustee of Alzheimer's Research UK. JO reports personal fees from TauRX Therapeutics, Axon, GE Healthcare, Roche, and Eisai; non-financial support from Alliance Medical; and grants from Merck; outside the submitted work. NT reports grant support from Avenir Pharma and NIHR Applied Research Collaborations and Comprehensive Research Network leadership roles. AJT reports grants from the NIHR Health Technology Assessment Programme, during the conduct of the study. All other authors declare no competing interests other than NIHR funding for investigator time on this grant., (Copyright © 2021 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Recent research suggests the positive effect of physical activity on health-related quality of life in people with dementia may be mediated through improved activities of daily living and reduced depressive symptoms. One hundred and twenty-four people with dementia and their informal carers were recruited from the South East of England for this observational study. A subset of participants wore an accelerometer for 30 days. A series of bivariate analyses were completed, alongside mediation analyses. In people with mild to moderate severity dementia, weak positive associations were widely reported between physical activity indices and health-related quality of life, though only a single association reached statistical significance (rs = .25, p = .03). Mediation analysis revealed no significant indirect effects across the models after controlling for cognition. Future research needs to explore such relationships with a greater emphasis on the modality and psychosocial components of physical activity rather than just frequency, duration, and intensity.

Background: Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings., Design: Systematic review., Methods: Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review., Results: Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use., Conclusions: Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.

The aim of this study was to identify the differences in quality of life (QoL) and well-being between working and nonworking dementia carers and the relative contribution of psychological characteristics, caregiving experience, and social support. Multiple regressions modeled the contribution of working status, caregiver experiences, and psychological and social resources to carer QoL (EQ-5D) and well-being (WHO-5). After controlling for age, gender, carer-dyad relationship, and severity of dementia, working status contributed significant variance to EQ-5D (2%) but not to WHO-5 scores. Independent of working status, higher self-esteem and reduced stress contributed to variance in both models. Self-efficacy, social support, and positive perceptions of caregiving additionally contributed to higher WHO-5 scores. Working status associated with higher EQ-5D QoL; this may reflect the sustained sense of independence associated with supported work opportunities for carers. Outside of working status, the findings support the importance of psychological and social factors as targets to improved mental health for dementia carers.

Background: Traditional healthcare education typically focuses on short block clinical placements based on acute care, investigations and technical aspects of diagnosis and treatment. It may therefore fail to build the understanding, compassion and person-centred empathy needed to help those with long-term conditions, like dementia. Time for Dementia was developed to address this., Method: Parallel group comparison of two cohorts of UK medical students from universities, one participating in Time for Dementia (intervention group) and one not (control group). In Time for Dementia students visit a person with dementia and their family in pairs for 2 hours three times a year for 2 years, the control group received their normal curriculum., Results: In an adjusted multilevel model (intervention group n = 274, control n = 112), there was strong evidence supporting improvements for Time for Dementia participants in: total Approaches to Dementia Questionnaire score (coefficient: 2.19, p = 0.003) and its person-centredness subscale (1.32, p = 0.006) and weaker evidence in its hopefulness subscale (0.78, p = 0.070). There was also strong evidence of improvement in the Dementia Knowledge Questionnaire (1.63, p < 0.001) and Dementia Attitudes Scale (total score: 6.55, p < 0.001; social comfort subscale: 4.15, p < 0.001; dementia knowledge subscale: 3.38, p = 0.001) scores. No differences were observed on the Alzheimer's Disease Knowledge Scale, the Medical Condition Regard Scale or the Jefferson Scale of Empathy., Discussion: Time for Dementia may help improve the attitudes of medical students towards dementia promoting a person-centred approach and increasing social comfort. Such patient-focused programmes may be a useful complement to traditional medical education., (© 2021 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Introduction: Physical activity may have a number of physical and mental health benefits for people with dementia and their carers. However, there is limited evidence about factors that influence physical activity participation in these groups. This study therefore looks at the barriers, facilitators and motivators of physical activity in people with dementia, from both the perspective of the person with dementia and their carer., Method: Thirty participants (15 sets of community-dwelling people with dementia and their family carers) were recruited from the South East of England. The participants took part in semi-structured dyadic interviews about their views of physical activity. Interviews were analysed using inductive thematic analysis at an individual level and comparisons were made between the groups., Results: Common motivator themes across persons with dementia and family carers were emotional and physical wellbeing, and social connectedness. Physical health was seen as a common barrier in both groups. Physical activity in the person with dementia was encouraged and supported by the family carer. For the carer, their caring role, and limited time acted as barriers to their participation., Conclusion: Themes such as social connectedness, positive emotion and health were seen as key motivators to physical activity, which indicate that people with dementia and carers use physical activity as a means to maintain and improve their quality of life. Supporting family members to better facilitate such activities could encourage physical activity in people with dementia.

Introduction: Perceptions of dementia are important determinants of support, treatment and care received in the dementia community. Understanding these perceptions are vital for regions such as Latin America, where there is a rapid increase in people living with dementia. The aim of this study is to review and synthesise the general public's perceptions of dementia in Latin America, what factors are associated with these perceptions, and how they differ between countries in the region. Methods: Searches were completed across five databases (Medline, SCOPUS, PsychINFO, SciELO, and WoS). Studies were required to capture attitudes or knowledge of dementia in the general public residing within Latin America. English, Spanish and Portuguese search terms were used. Results were synthesised narratively. Results: About 1574 unique records were identified. Following lateral searches, de-duplication and screening, six articles (four studies) met the inclusion criteria for this review. All the studies were quantitative research from Brazil (median, n  = 722). There was evidence of a limited to moderate knowledge of dementia, though a significant minority had negative or stigmatising attitudes. Only higher levels of education were consistently associated with better attitudes and knowledge of dementia in the region. Conclusion: There is a need for more in-depth research about attitudes of the general public across Latin America, particularly outside of São Paulo state, Brazil. There appears to be a greater need to raise awareness of dementia amongst less educated Latin American groups.

Objectives: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia., Methods: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35-80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed., Results: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques., Discussion: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

Objectives: As the number of people living with dementia increases, reducing stigma has become a policy priority. One way of decreasing stigma is through contact with the stigmatised group. However, the impact of this is difficult to establish due to a lack of validated measures suitable for adolescents. The aim of this study was to develop and validate a level of contact questionnaire designed to assess adolescents' contact with people living with dementia., Methods: Participants were recruited from five schools in two studies (N = 446 and N = 488) and completed the preliminary 11-item version of the adolescent level of contact of dementia (ALoCD)., Results: Study 1 explored the factor structure of the ALoCD, revealing two factors 'direct contact' and 'indirect contact'. Study 2 confirmed the structure of the ALoCD and tested for discriminant validity. These two studies resulted in a 9-item scale that showed adequate internal consistency (α = .89, α = .62) and discriminant validity between those who did and did not live with a person with dementia., Conclusion: The development of this scale enables assessment of direct (eg, living with a person with dementia) and indirect (watching a TV show about dementia) contact with dementia, and the extent of this contact. This initial validation suggests a psychometrically sound scale but further research should be undertaken to fully explore the properties of the scale., (© 2020 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives is imperative in order to sustain dementia friendly communities. With this in mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities.

Background: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures., Methods: In the MODEM cohort study, three-hundred and seven people with clinically diagnosed dementia and their carers were recruited on a quota basis to provide equal numbers of people with mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, n = 100), and severe (sMMSE 0-9, n = 97) cognitive impairment. A series of multiple regression models were created to understand the associations between dementia severity and the QoL of people with dementia and the QoL of their carers. QoL was measured using self- (DEMQOL, EQ-5D, CASP-19) and proxy-reports (DEMQOL-Proxy, EQ-5D) of disease-specific and generic QoL of the person with dementia. Carer generic QoL was measured by self-report (EQ-5D, SF-12)., Results: Disease severity, as measured by the sMMSE, was not significantly associated with the QoL of the person with dementia or the carer (p > 0.05), even after controlling for potential confounding variables for self-reported instruments. Proxy measures (rated by the carer) differed systematically in that there were small, but statistically significant proportions of the variance of QoL was explained by severity of cognitive impairment in multiple adjusted models. We also found little in the way of statistically significant relationships between the QoL of people with dementia and that of their carers except between DEMQOL-Proxy scores and the carer EQ-5D scores and carer SF-12 mental sub-scores., Conclusions: The data generated supports the somewhat counterintuitive argument that severity of cognitive impairment (and therefore severity of dementia) is not associated with lower QoL for the person with dementia when self-report measures are used. However, in absolute terms, as judged by the variance in the multivariate models, it is clear that the contribution of dementia severity to the QoL of people with dementia is minimal whatever the measurement used, be it self- or proxy-rated, or disease-specific or generic.

Objectives: There is a lack of understanding about how adolescents perceive dementia, and what their dementia related experiences are. Without such information, it is hard to make a case for the need to raise awareness of dementia in adolescents, and the best strategies to achieve this. Methods: In a cohort of 901 adolescents (aged 13-18) from the South East of England, we explored what the experiences and perceptions of dementia were using a series of questionnaires. Descriptive data of individual items were reported, comparing differences between genders. Results: The adolescents within this study tended to have positive or neutral attitudes towards dementia, though there was evidence that a proportion of adolescents had misconceptions or held negative attitudes (e.g. 28.5% of adolescents disagreed with the statement 'In general, I have positive attitudes about people with dementia'). We also identified that the adolescents had a range of experiences of dementia including providing some form of care for someone with dementia (23.2%), though most had indirect contact with dementia through TV and movies (77.3%), or adverts (80.2%). Females nearly always had better attitudes towards dementia and had significantly more contact with dementia. Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age group.

Background: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample., Methods: 301 adolescents (M = 12.6 years old, SD = 0.73) were assigned to either receive Dementia Friends (a 60-min interactive class that teaches about dementia and its effects on people's lives) or education as usual. All participants completed a series of validated questionnaires pre- and post-intervention, related to dementia attitudes (Brief A-ADS and KIDS)., Results: Adolescents in the dementia awareness group showed little to no improvements between time-points. The change scores in the dementia awareness group did not significantly differ to the control group based on both KIDS (d = - 0.003, p = 0.98) and Brief A-ADS (d = 0.14, p = 0.13) measures. There was no Group x Time effect after controlling for confounding variables., Conclusions: Dementia Friends is successful in terms of reach and impact, though this study suggests that it may fall short of achieving its goal of improving attitudes towards dementia. Importantly, Dementia Friends did not have a negative effect on attitudes, and the majority of adolescents enjoyed the sessions. It is important that these findings are replicated in a larger randomised-controlled study.

Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers., Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings., Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia., (© 2019 John Wiley & Sons, Ltd.)

Background and Objectives: The prevalence of dementia will increase in low- and middle-income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear., Research Design and Methods: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analyzed thematically., Results: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Help-seeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations., Discussion and Implications: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

COVID-19 has caused unprecedented health, economic and societal impacts across the world, including many low- and middle-income countries (LMICs). The pandemic and its fallout have laid bare deep-seated social and economic inequalities with marginalised groups being at greater risk of infection and being disproportionately affected by containment measures and their socioeconomic consequences. Stigma is a central element to such inequalities but remains largely overlooked in the debate on the response to COVID-19, including in LMICs. Yet we know from experiences with other infectious diseases such as HIV/AIDS and Ebola that disease-related stigma is detrimental to halting and controlling pandemics and achieving equitable development. Emerging evidence suggests that stigma associated with COVID-19 is already taking hold. This paper assesses potential driving factors of COVID-19-related stigma, and how this intersects with existing stigma fault lines and explores mechanisms through which COVID-19-related stigma may be counteracted, with a focus on LMICs., Competing Interests: Conflict of interestOn behalf of all authors, the corresponding author states that there is no conflict of interest., (© European Association of Development Research and Training Institutes (EADI) 2020.)

Objective: To produce a strategic roadmap for supporting the development of dementia research in Pakistan., Background: While global research strategies for dementia research already exist, none is tailored to the specific needs and challenges of low- and middle-income countries (LMIC) like Pakistan., Methods: We undertook an iterative consensus process with lay and professional experts to develop a Theory of Change-based strategy for dementia research in Pakistan. This included Expert Reference Groups (ERGs), strategic planning techniques, a "research question" priority survey, and consultations with Key Opinion Leaders., Results: We agreed on ten principles to guide dementia research in Pakistan, emphasizing pragmatic, resource sparing, real-world approaches to support people with dementia, both locally and internationally. Goals included capacity/capability building. Priority research topics included raising awareness and understanding of dementia, and improving quality of life., Conclusion: This roadmap may be a model for other LMIC health ecosystems with emerging dementia research cultures., (© 2019 The Authors.)

Objective: To investigate the routine use of a measure of quality of life (QoL) in care homes and assess its psychometric properties when used by care staff., Design: A cross-sectional two-phase study., Setting and Participants: Data were collected from care staff in seven care homes in East Sussex, England., Method: Phase I: The ability of care staff from two care homes to use the DEMQOL-Proxy without interviewer administration was assessed using agreement analysis between a self-administered and interviewer-administered version of the instrument. Based on these findings, DEMQOL-Proxy was adapted into a new version, DEMQOL-CH, for use as a self-administered instrument in care homes. We assessed agreement between the new DEMQOL-CH and DEMQOL-Proxy to ensure DEMQOL-CH was used correctly. Phase II: A preliminary assessment of the psychometric properties of DEMQOL-CH when used routinely was completed in a further five care homes., Results: Phase I: Nineteen care staff from two care homes completed QoL measurements for residents. Systematic error was identified when staff self-completed the DEMQOL-Proxy without an interviewer. We modified the DEMOoL-Proxy to create DEMQOL-CH; this reduced the error, producing a version that could be used more accurately by care staff. Phase II: Eleven care staff from five care homes rated resident QoL routinely. DEMQOL-CH showed acceptable psychometric properties with satisfactory reliability and validity and a clear factor structure., Conclusions: The research presents positive preliminary data on the acceptability, feasibility and performance of routine QoL measurement in care homes using an adapted version of DEMQOL-Proxy, the DEMQOL-CH. Results provide evidence to support the concept that routine measurement of QoL may be possible in care homes. Research is needed to refine and test the methodology and instrument further and to explore the potential for benefits to residents, staff and care homes in larger and more representative populations., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument., Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures., Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms., Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

Physical activity questionnaires are an important means to assess habitual physical activity. It remains unclear what questionnaires are used and whether they are appropriate for people with dementia who have impaired information recall but are also often largely sedentary. This scoping review aimed to identify and quantify the use of physical activity questionnaires within a dementia population. Eighteen studies met the inclusion criteria for this review. The majority of studies used questionnaires that were validated for use within an older adult population (e.g., Modified Baecke Questionnaire for the Elderly), though none had specifically been validated for use in people with dementia. Interestingly, just over half of the studies ( N  = 10, 55.6%) adapted the questionnaires from the original validated version by allowing a proxy to provide input to the responses. Future research needs to robustly validate the use of proxy-report measures of physical activity in people with dementia.