Nicolas Farina

Background: Dementia affects nearly 1 million people in the United Kingdom and their unpaid carers physically, psychologically, socially and economically, highlighting that both need support. Post-diagnostic support is recognised as inadequate globally. In England, it is fragmented or absent apart from primary care – leaving many feeling unsupported as the condition progresses. The Dementia PersonAlised Care Team research programme began in 2018 to address evidence gaps on the effectiveness of dementia support roles and what constitutes ‘good’ support. Objective: Dementia PersonAlised Care Team aimed to develop and evaluate an intervention comprising dementia support workers based in primary care, supporting people with moderate to severe dementia and their carers. Phase 1 focused on intervention development and feasibility testing. Phase 2 evaluated the dementia support workers’ value and impact. Our Peer Research Group contributed to the design, analysis and interpretation of data in both phases. Design and methods: Phase 1 employed a realist approach to develop theory, the intervention and practitioner support package. This was informed by literature, consulting experts by experience, academics and practitioners and a formative evaluation. A pilot cluster randomised controlled trial tested the feasibility of recruitment, outcome measures and eligibility criteria. Phase 2 included a realist longitudinal mixed-methods evaluation to determine what worked, for whom and in what circumstances. High-volume qualitative data included realist interviews with participants with dementia and carers at two time points, interviews with dementia support workers and general practitioner staff/other practitioners, observations, dementia support worker case notes and reflections, and medical records. Quantitative measures of health- and quality of life-related outcomes, experience of care, carer well-being and support, and resource use were collected at three time points. A mixed-methods integration was conducted following separate qualitative, quantitative and economic analyses. Setting and participants: Phase 1 recruited participants with dementia (some without capacity) and their carers (if present) from general practitioner practices in rural Devon and Greater Manchester. In phase 2, participants were recruited from practices in rural and coastal areas in Devon (high deprivation) and urban Greater Manchester (including areas with higher representation of South Asian communities). Intervention: The Dementia PersonAlised Care Team intervention, developed in phase 1, delivers personalised, proactive and integrated dementia care via trained dementia support workers embedded in primary care. Drawing on coaching principles, dementia support workers empower decision-making and address psychosocial, health and practical needs through flexible, ongoing support. Support is tailored to individuals’ and carers’ needs. Consented participants were offered 12 months of support, which is flexibly stepped up or down based on need. Findings: In phase 1, the Dementia PersonAlised Care Team intervention was tested in 10 general practitioner practices. COVID-19 necessitated switching to remote intervention delivery, recruitment and data collection. Intervention and recruitment strategy (including capacity assessment) were acceptable. However, only 51% (56/110) of the recruitment target was met, making a fully powered cluster randomised controlled trial unfeasible within the funding envelope. A mixed-methods longitudinal realist approach was therefore adopted for the evaluation (phase 2). In phase 2, 126 PwD and 121 carers were recruited from 13 practices – reaching 70% (126/180) of the recruitment target. Retention in the intervention was high (79%). However, participation in follow-up data collection was poor for all quantitative measures, for example, only 22% (28/126) of participants completed the Engagement and Independence in Dementia Questionnaire at 9–12 months. The longitudinal realist analysis identified four areas of positive impact linked to dementia support worker actions: living well, proactive care, reactive care and care transitions. Participants spoke about improved social engagement, medication management and holistic care outcomes despite the inevitable functional decline. Supervision and peer support for dementia support workers, along with joint work with practice teams, were key to delivering this care. Quantitative data showed either stable or declining trends except for carer perceptions of support, which improved over time. Realist-informed economic analysis identified 23 cases where dementia support workers likely prevented high-cost care escalation through early intervention, access to general practitioner records and ability to prompt general practitioners’ care. Resource use shifted towards increased primary/community care and reduced secondary care costs. At a caseload of 53 dyads at any one time, mean annual cost per dyad was estimated at £1222.48. Limitations: Low data completion rates, individual variability and the non-randomised design significantly limited utility of quantitative findings. Conclusions: This work demonstrated how gaps in post-diagnostic support for people with dementia and carers can be addressed through tailored, proactive support and dementia support workers being fully embedded in primary care. A comprehensive training and ongoing support package is essential for enabling dementia support workers to carry out their role. Future work: Further implementation research is needed to test delivery in changing National Health Service contexts, including whether different roles can deliver personalised dementia support. Study registration: This study is registered as ISRCTN90828574. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research Programme (NIHR award ref: RP-PG-0217-20004) and is published in full in Programme Grants for Applied Research ; Vol. 14, No. 17. See the NIHR Funding and Awards website for further award information.

There are an estimated 55.2 million people living with dementia globally (Nichols et al., 2022). With a globally ageing population, there will be a greater number of people likely to be affected by...

Background: Elder abuse is under‐researched in low‐and middle‐income countries (LMICs) where culture and context shape detection and reporting. This study estimated the prevalence, perpetrators and predictors of self‐reported elder abuse in South Africa. Methods: Data were collected in 2021 from 490 households in the STRIDE community‐based survey across the Western Cape and Limpopo provinces. Each household included an older adult (≥ 65 years) and an informant (≥ 18 years). The adapted EAST assessed physical, emotional, sexual and financial abuse and neglect. Other measures included functional impairment (WHODAS 2.0), dementia caseness (10/66 algorithm), dementia severity (DSRS), neuropsychiatric symptoms (NPI‐Q), social engagement (LSNS‐6), and a novel insight into memory impairment variable comparing informant and self‐ratings of memory. Logistic regression models examined demographic and health‐related predictors of self‐reported elder abuse. Results: One in ten (10.4%) older adults screened positive for abuse, with most perpetrators being either a non‐family member where there is a personal relationship, or family member. Financial (78%) and emotional (50%) abuse were dominant, while neglect, physical and sexual abuse were less frequent (< 6%). Functional impairment was associated with elder abuse (OR = 1.05, p < 0.01). Recall ability was not associated with reporting abuse, highlighting that cognitive limitations within the present sample did not influence disclosure. Conclusion: Elder abuse in South Africa is prevalent and closely linked to functional dependence and financial exploitation. This is one of the first studies to examine the relationship between dementia, functional impairment and elder abuse at community level, providing critical evidence to inform prevention and support strategies in LMICs.

Background: Global dementia policies advocate for early or timely diagnosis, yet evidence on benefits or harms remains limited. This systematic review evaluates quantitative evidence comparing outcomes of early versus late and timely versus untimely dementia diagnoses. Methods: Following PRISMA guidelines, the protocol was registered on PROSPERO. Comprehensive searches of PsycINFO, Medline, Embase, SCOPUS, and CINAHL were conducted without date restrictions. Eligible studies defined diagnostic timing and examined associations with outcomes for people with dementia and/or carers. Quality was appraised using the QuADS tool, and data were narratively synthesised. Results: Four studies (2018–2021) met inclusion criteria, encompassing 37,341 individuals with dementia and 1409 carers across Europe and the United States. Three studies investigated early versus late diagnosis; one assessed perceived timeliness. Definitions varied. Evidence of benefit was limited: one study reported a 9–23% reduction in mortality risk for early diagnosis. Another found that carers perceiving the diagnosis as untimely experienced greater and more persistent emotional distress. No significant associations were observed for cognitive or functional decline, hospitalisation, or emergency department attendance. Conclusions: Despite strong policy endorsement, empirical evidence on benefits of early or timely dementia diagnosis remains scarce, geographically narrow, and methodologically constrained. Future longitudinal studies explicitly defining diagnostic timing and incorporating psychosocial and contextual factors are needed to clarify potential benefits or harms for people with dementia and their carers.

Background: Agitation is a common comorbidity of people with dementia and can be particularly distressing. Technology may be a valid way to detect agitation in people with dementia in real time to allow for intervention. RadioMe combines agitation detection technology (e.g. through wearables) alongside relaxing music response to support people to live independently within the community. The system seamlessly mixes music with a live radio and can incorporate diary reminders too. Method: The RadioMe system was installed in 20 community‐dwelling people with dementia with agitation symptoms for up to four months, in this proof‐of‐concept study. In the first two months participants had access to the radio and diary reminder elements of the system; in the second two months participants also had access to the relaxing music playlist elements. We measured quality of life, agitation and implementation outcomes across the timepoints. Qualitative interviews were used to better understand participants’ experiences of the system. Result: Findings indicate that people with dementia were generally satisfied with the system (Mdn = 3.5), and perceived it to be acceptable (AIM, Mdn = 3.7), appropriate (Mdn = 3.5) and feasible (Mdn = 3.5). There was evidence that participants did struggle to integrate it into their day‐to‐day lives, and there were frequent issues with the setup and connectivity of the wearables. There was no evidence that the system had a detrimental effect on people's quality of life or agitation symptoms. Conclusion: An automated system to detect agitation and respond with relaxing music has potential value, but ensuring the technology is accessible and not disruptive should be a priority before it can be adopted more widely for people with dementia.

Background: Agitation is a common comorbidity of people with dementia and can be particularly distressing. Technology may be a valid way to detect agitation in people with dementia in real time to allow for intervention. RadioMe combines agitation detection technology (e.g. through wearables) alongside relaxing music response to support people to live independently within the community. The system seamlessly mixes music with a live radio and can incorporate diary reminders too. Method: The RadioMe system was installed in 20 community‐dwelling people with dementia with agitation symptoms for up to four months, in this proof‐of‐concept study. In the first two months participants had access to the radio and diary reminder elements of the system; in the second two months participants also had access to the relaxing music playlist elements. We measured quality of life, agitation and implementation outcomes across the timepoints. Qualitative interviews were used to better understand participants’ experiences of the system. Result: Findings indicate that people with dementia were generally satisfied with the system (Mdn = 3.5), and perceived it to be acceptable (AIM, Mdn =3.7), appropriate (Mdn = 3.5) and feasible (Mdn = 3.5). There was evidence that participants did struggle to integrate it into their day‐to‐day lives, and there were frequent issues with the setup and connectivity of the wearables. There was no evidence that the system had a detrimental effect on people's quality of life or agitation symptoms. Conclusion: An automated system to detect agitation and respond with relaxing music has potential value, but ensuring the technology is accessible and not disruptive should be a priority before it can be adopted more widely for people with dementia.

One of the key barriers to a diagnosis of dementia is stigma and misunderstanding. Simple misconceptions can significantly influence the timing and likelihood of receiving a dementia diagnosis. In this chapter, we present examples of dementia stigma from Pakistan and Kenya, highlighting some common misconceptions and how these might translate into discrimination. From Kenya, we also present two different programmes on how we can tackle dementia stigma and its short-term efficacy. Whilst unresourced health systems may ultimately prevent dementia diagnosis in the majority world, misconceptions certainly amplify barriers to receiving a diagnosis. Raising awareness of dementia, particularly among the general public and healthcare professionals, is essential to ensure that everyone can receive a timely diagnosis.

Background: Experiencing agitation can be particularly distressing for people with dementia and their caregivers. Using technologies to detect agitation can help monitor and intervene when agitation occurs, potentially reducing overall care and support needs. This systematic review aims to explore the implementation outcomes related to the use of agitation detection technologies in people with dementia. By adopting a taxonomy of implementation outcomes, this review seeks to provide insights valuable for the real-world adoption of such technologies for people with dementia. Methods: Searches were conducted in the following databases: SCOPUS, PubMed, PsychINFO, IEEEXplore, and CINAHL Plus. Included studies were required to have implemented, evaluated, or validated technology with the intention to detect agitation in people with dementia in real-time. Results: On 14 May 2024, 1697 records were identified, and 19 were included in the review. The median sample size was 10, and around two-thirds of the records (n = 12, 63%) used ‘multimodal’ technologies for detecting agitation. Over half of the records (n = 10, 53%) were reporting from two studies. Across technologies, there was evidence of acceptability and feasibility, though there was a general absence of primary data related to implementation outcomes. There were, however, a number of technical issues and limitations that affected the fidelity and appropriateness of the technology, albeit not unique to people with dementia. Conclusions: There is a need for more empirical data on this topic to maximise uptake and adoption. Future research needs to ensure that the voice of the person with dementia is integrated within the evaluation process.

Background: Promoting a ‘timely’ diagnosis is a global policy directive. Aims: This review adopts an intersectional approach, visually mapping the existing literature to highlight gaps in the evidence base on barriers and facilitators to dementia diagnosis. Method: A systematic approach was undertaken, following the PRISMA guidelines, updating previous reviews. The literature search was conducted on PubMed, PsycINFO, CINAHL Complete and Scopus. In line with mapping review methodology, we report the current state of the literature by describing the number of studies that outline barriers and facilitators to seeking help for a dementia diagnosis, split by social categorisation. Results: On the 7 June 2024, a total of 45 studies were identified. Our mapping demonstrated the majority of studies were derived from high-income countries and did not specify whether they were exploring barriers and facilitators through a specific social lens. Ethnicity was one of the few social categories where a range of evidence was reported. Other categories, such as socioeconomic status, gender and sexual orientation, received limited research attention. Conclusions: Our mapping review suggests the large body of work within this field tends to treat people with dementia and their carers as homogenous and androgenous groups. To better inform this key policy directive, studies are needed that explore the influence of social determinants on people’s experiences of seeking a dementia diagnosis. Such work would create a richer, more nuanced evidence base that better elicits ways of addressing inequalities and inequities that arise at this key stage of people’s dementia care journey.

Objectives: As the global dementia crisis intensifies, especially in low‐and middle‐income countries (LMICs), there is a pressing need for comprehensive prevalence data across diverse regions, including Brazil, where studies have been predominantly limited to affluent urban centers. This study aimed to conduct an expert consensus to determine the prevalence of all‐cause dementia in Brazil, considering various age groups, sexes, and geographical areas.Methods: A Delphi consensus process with clinical and academic experts from across Brazil was conducted to provide dementia prevalence estimates in people aged ≥ 60 years living throughout Brazil for 2019. Each round consisted of answering structured questionnaires that incorporated information from the literature. A priori criteria were used to ascertain the point in which consensus was achieved for > 70% of the 15 prevalence estimates—for (1) total, (2) women and men, and (3) the five Brazilian macro‐regions. The current and projected dementia cases in Brazil were calculated based on age and sex population distributions.Results: Fifteen experts, with a mean professional experience of 25 ± 10 years, reached a consensus in the fourth round. Experts agreed with a mean all‐cause dementia prevalence of 8.5% among Brazilians aged ≥ 60 years, which comprised 2.46 million people in 2019 in this age. They reported higher dementia rates in women (9.1%) than men (7.7%); the highest total prevalence was in those over 80 where it exceeds 20%. Regional variations were also noted, with lower prevalence in the South (7.3%) and higher in the North (8.9%) and Northeast (10.1%). Projections estimate that considering Brazil’s rapidly aging population, dementia cases will rise to 8.89 million by 2060.Conclusions: This Delphi study estimated that dementia already affects roughly 1 in 12 older Brazilians aged 60 and above, with slightly higher prevalence in women and significant geographical variations. These results underscore the urgency for targeted public health strategies in Brazil and offer a framework for similar challenges in other LMICs, especially given that dementia cases are projected to increase by approximately 3.6 times in 4 decades.