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Background: It is estimated that there are about 25,000 people from UK ethnic minority groups with dementia. It is clear that there is an increasing need to improve access to dementia services for all ethnic groups to ensure that everyone has access to the same potential health benefits. The aim was to systematically review qualitative studies and to perform a meta-synthesis around barriers and facilitators to accessing care for dementia in ethnic minorities. Methods: Databases were searched to capture studies on barriers and facilitators to accessing care for dementia in ethnic minorities. Analysis followed the guidelines for meta-ethnography. All interpretations of data as presented by the authors of the included papers were extracted and grouped into new themes. Results: Six hundred and eighty four papers were identified and screened. Twenty eight studies were included in the meta-synthesis. The analysis developed a number of themes and these were incorporated into two overarching themes: 'inadequacies' and 'cultural habitus'. Conclusions: The two overarching themes lend themselves to interventions at a service level and a community level which need to happen in synergy. [ABSTRACT FROM AUTHOR]

This paper contributes to the ongoing discussion in the United Kingdom regarding euthanasia and assisted dying, using data specifically related to individuals with dementia. A qualitative approach was taken with data captured via a set of written questions in the form of a Mass Observation Archive Directive. The respondents, known as Observers, provided written responses; there was no limit to the length of the responses and the Observers were able to provide as much or as little detail as they chose. The data were analysed thematically utilising NVivo software. One-hundred and seven responses were received, representing a range of beliefs, and with opinions regarding euthanasia and dementia with pro, anti, and uncertain views being expressed. Five main themes emerged during our data analysis: capacity, legislation, agency and personal philosophies, disquietude, and incumbrance. Consistent with previous research capturing public views regarding euthanasia and assisted dying for people with dementia, the findings suggest policy makers may wish to consult the British public regarding legislation regarding euthanasia and dementia. [ABSTRACT FROM AUTHOR]

Introduction: It is well established that the actions and behaviour of dementia care workers are fundamental to the wellbeing of the people they care for. Not only do they deal with basic healthcare needs, but they also perform a vital psycho-social function by providing–through their regular presence–an underlying continuity for residents. This has been shown to improve well-being, particularly for those in the advanced stages of dementia. It has also been suggested that there are additional psycho-social benefits of such contact which can directly influence the need for anti-psychotic medication. However, unlike most other healthcare and medical settings, the specialised and often difficult interactions that dementia care workers handle every day have not yet been the subject of detailed micro-level analysis. This is particularly significant because much of the impact that care-workers have relates to the way in which they interact with the people they care for. Not having a clear understanding of how their interactions 'work' at the micro-level–particularly ones that are specific to dementia care settings, and that care workers report to be difficult or challenging–means that any training interventions that are developed may not resonate with their real-world experience, and ultimately run the risk of failing. This video-based observational study aims to provide a detailed micro-exploration of problematic and challenging interactions involving care-workers and people living with dementia. Setting and methods: The study is based in the UK and will involve up to 20 dementia care staff and 60 people living with dementia. Fieldwork will be conducted in 5 dementia care home and community-based dementia day care settings using naturalistic observational methods (primarily video-ethnography). Data will be analysed using Conversation Analysis (CA). [ABSTRACT FROM AUTHOR]

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. Methods: This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups. Results: Two main categories 'honest, accurate and up‐to‐date information' and 'who is the information for' and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co‐create information to ensure that they meet people's information needs. Patient or Public Contribution: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co‐create a guide for wards on writing their information leaflets and to support the co‐creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia. [ABSTRACT FROM AUTHOR]

Objective: Identifying existing recruitment and methodological issues within dementia research conducted in UK studies that included ethnic minorities. Methods: We searched for and included any publication detailing dementia research in the UK that included any ethnic minority. The search results and all titles and abstracts were screened according to the inclusion criteria followed by screening of the full texts. We extracted data regarding the recruitment and methodological issues faced by the researchers. This data was combined and listed, and related issues were grouped into overarching themes and subthemes. Results: Of 52 publications suitable for analysis, 33 provided data collated into six themes: attitudes and beliefs about dementia in ethnic minority communities, recruitment process, data collection issues, practical issues, researcher characteristics, and lack of published research and normative data. These themes allowed us to identify three areas responsible for addressing these recruitment and methodological issues: community and patient education, health services, and researchers' training. Conclusions: This is the first review identifying recruitment and methodological issues within UK dementia research that included ethnic minorities. We now have a compilation of reported existing issues and a framework of areas responsible for addressing them and devising solutions. [ABSTRACT FROM AUTHOR]

Dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes, loss of cognitive and social functioning brought about by progressive neurological disorders. It is estimated that around one million people live with a dementia in the UK, with that figure set to rise to 1.2 million by the year 2040. We are learning more about the risk factors for developing dementia over the life course. This paper discusses the non-modifiable and modifiable risk factors for dementia and considers health promotion and health education activities that can be used by community nurses. [ABSTRACT FROM AUTHOR]

Background vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. Methods family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. Results across 62 baseline and follow-up interviews with family carers (n  = 26; 11) and care home staff (n  = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. Conclusions we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff. [ABSTRACT FROM AUTHOR]

Introduction: exposure to air pollution has been shown to increase risk of inflammatory processes and risk of cardiovascular mortality. Such exposure may therefore also be a risk factor for cognitive impairment/dementia. Method: a systematic review of the literature was conducted with databases searched using keywords for air pollution, cognitive decline and dementia. All identified abstracts and potentially relevant articles were double read. For those papers meeting the inclusion criteria, summary tables were prepared and papers quality assessed. Results: from 1,551 abstracts identified, 10 articles were retrieved of which two were rejected. Of the eight remaining six reported prevalent cognitive assessment with historical pollution exposure and two incident cognitive decline, also with historical pollution exposure. In general, an association was reported between exposure and poorer prevalent measures of cognitive function. Data were mixed for incident cognitive decline with one study finding an association and the other not. Reports were limited by a lack of detailed reporting, use of proxy measures of pollution exposure and a lack of clarity regarding cognitive testing methodology and analysis. Conclusion: this systematic review highlights that there is some evidence of a potential association between air pollution and subsequent cognitive decline. Further work is clearly required and longitudinal analysis of ongoing cohort studies or new research would add much needed clarity to this area. [ABSTRACT FROM AUTHOR]

Due to its progressive nature, dementia is now the leading cause of death in England and Wales, so a palliative approach to care is beneficial because of its emphasis on supportive care. Many people with dementia also have other comorbid health conditions common in older age, that in themselves may induce pain. However, people with dementia may have difficulty in understanding what they are feeling and in describing and locating the pain due to having issues with communicating their needs as their dementia progresses. This paper considers the recognition, assessment, treatment and management of pain in older people with dementia. It introduces the learner to what is known about the subject and why it is important to know the person's past history and previous ways of self-managing pain and discomfort using information gained from their family, carers and friends. [ABSTRACT FROM AUTHOR]

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.Methods: A cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions.Results: Data from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores.Conclusions: Carers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia. [ABSTRACT FROM AUTHOR]

Background dementia policy suggests diagnosing dementia early can reduce the risk of potentially harmful hospital admissions or emergency department (ED) attendances; however, there is little evidence to support this. A diagnosis of mild cognitive impairment (MCI) before dementia is a helpful proxy to explore early diagnosis. This study investigated the association between an early diagnosis of dementia and subsequent hospitalisations and ED attendances. Method a retrospective cohort study of electronic health care records from 15,836 patients from a large secondary care database in South London, UK. Participants were divided into two groups: those with a diagnosis of MCI before dementia, an early diagnosis, and those without. Cox regression models were used to compare the risk of hospitalisation and ED attendance after dementia diagnosis and negative binomial regression models were used to compare the average length of stay and average number of ED attendances. Results participants with an early diagnosis were more likely to attend ED after their diagnosis of dementia (HR = 1.09, CI = 1.00–1.18); however, there was no difference in the number of ED attendances (IRR = 1.04, CI = 0.95–1.13). There was no difference in the risk of hospitalisation (HR = 0.99, CI = 0.91–1.08) or length of stay between the groups (IRR = 0.97, CI = 0.85–1.12). Conclusion the findings of this study do not support the assumption that an early diagnosis reduces the risk of hospitalisation or ED attendance. The patterns of health service use in this paper could reflect help-seeking behaviour before diagnosis or levels of co-morbidity. [ABSTRACT FROM AUTHOR]

Background: People living with dementia in care homes frequently exhibit "behaviour that challenges". Anti-psychotics are used to treat such behaviour, but are associated with significant morbidity. This study researched the feasibility of conducting a trial of a full clinical medication review for care home residents with behaviour that challenges, combined with staff training. This paper focusses on the feasibility of measuring clinical outcomes and intervention costs., Methods: People living with moderate to severe dementia, receiving psychotropics for behaviour that challenges, in care homes were recruited for a medication review by a specialist pharmacist. Care home and primary care staff received training on the management of challenging behaviour. Data were collected at 8 weeks, and 3 and 6 months. Measures were Neuropsychiatric Inventory-Nursing Home version (NPI-NH), cognition (sMMSE), quality of life (EQ-5D-5 L/DEMQoL) and costs (Client Services Receipt Inventory). Response rates, for clinical, quality of life and health economic measures, including the levels of resource-use associated with the medication review and other non-intervention costs were calculated., Results: Twenty-nine of 34 participants recruited received a medication review. It was feasible to measure the effects of the complex intervention on the management of behaviour that challenges with the NPI-NH. There was valid NPI-NH data at each time point (response rate = 100%). The sMMSE response rate was 18.2%. Levels of resource-use associated with the medication review were estimated for all 29 participants who received a medication review. Good response levels were achieved for other non-intervention costs (100% completion rate), and the EQ-5D-5 L and DEMQoL (≥88% at each of the time points where data was collected)., Conclusions: It is feasible to measure the clinical and cost effectiveness of a complex intervention for behaviour that challenges using the NPI-NH and quality of life measures., Trial Registration: ISRCTN58330068. Retrospectively registered, 15 October 2017.

This systematic review commissioned by the UK Department for the Environment, Food and Rural Affairs (Defra), considers how the evidence base for noise effects on health has changed following the recent reviews undertaken for the WHO Environmental Noise Guidelines. This systematic review assesses the quality of the evidence for environmental noise effects on mental health, wellbeing, and quality of life; birth and reproductive outcomes; and cognition for papers published since the WHO reviews (mid-2015 to March 2019), as well as for cancer and dementia (January 2014 to March 2019). Using the GRADE methodology (Grading of Recommendations Assessment, Development and Evaluation) most evidence was rated as low quality as opposed to very low quality in the previous reviews. There is now low-quality evidence for a harmful effect of road traffic noise on medication use and interview measures of depression and anxiety and low quality evidence for a harmful effect of road traffic noise, aircraft noise, and railway noise on some cancer outcomes. Many other conclusions from the WHO evidence reviews remain unchanged. The conclusions remain limited by the low number of studies for many outcomes. The quantification of health effects for other noise sources including wind turbine, neighbour, industrial, and combined noise remains a research priority., Competing Interests: CC1 and CC2 are environmental consultants undertaking environmental and health impact assessment for large infrastructure clients, amongst other consulting activities in the field of noise and health. The funder (Defra/HN) did not influence the design of the study or the collection or analyses or interpretation of data. The decision to publish was part of the original project scope. The authors declare no conflict of interest.

The number of people living with dementia is growing, leading to increasing pressure upon care providers. The mechanisms to reduce symptoms of dementia can take many forms and have the aim of improving the wellbeing and quality of life of the person living with dementia and those who care for them. Besides the person who has dementia, the condition has a profound impact upon their loved ones and carers. One therapeutic approach is the use of music, an area recognised as having potential benefit, but requiring further research. The present paper reports upon a mixed methods cohort study that examines the use of a musical mobile app as a way to promote song-task association in people living with dementia. The study took place in care home environments in the UK. A total of fourteen participants ( N  = 14) were recruited. Quantitative measurements were taken on a daily basis prior to, and during, use of the mobile app over several weeks. Metrics came from the complete Self-Assessment Manikin scale (arousal, valence, and dominance), and a subset of three from the Quality of Life in Alzheimer's Disease questionnaire (physical health, memory, and life as a whole). Subsequently, semistructured interviews were conducted with staff at the care home to assess the impact of the app upon their role and the residents they care for. No significant differences were found in the combined quantitative measures for the ten ( n  = 10) sets of responses sufficient to be analysed. However, the qualitative results suggest that use of the mobile app produced positive changes in terms of behaviour, ability, and routine in the life of residents living with dementia. These findings contribute to the growing body of evidence-based research in the field of musical therapies for reducing symptoms of dementia and highlight elements where further study is warranted., Competing Interests: Stuart Cunningham, Mark Brill, Harry Whalley, Rebecca Reid, and Richard Picking declare that there are no conflicts of interest regarding the publication of this paper. Gordon Anderson is a Director of Memory Tracks Ltd. Sarah Edwards is an employee of Pendine Park Care Home., (Copyright © 2019 Stuart Cunningham et al.)

Background: Dementia is a common diagnosis in older people. It is important to identify and record dementia on emergency call-outs, as it impacts on subsequent care decisions. Ambulance services are changing from paper to electronic patient records, but there are limited data on how frequently and in which sections of the electronic patient record dementia is being recorded. Aims: To audit the proportion of ambulance electronic patient records where dementia is recorded for patients aged (i) 65 and above and (ii) 75 and above, and to describe the sections in the electronic patient record in which dementia is recorded, as there is currently no standardised button or field available. Results: A total of 314,786 electronic patient records were included in the audit, over a one-year period. The proportion of attended calls with 'dementia' recorded in the electronic patient record in patients aged 65+ was 13.5%, increasing to 16.5% in patients aged 75+, which is similar to that recorded in previous literature. For patients aged 75+ conveyed to hospital, 15.2% had 'dementia' recorded in the electronic patient record, which may indicate under-recording. Recording of dementia between Clinical Commissioning Groups varied between 11.0% and 15.3%. Dementia was recorded in 16 different free-text fields, and 38.4% of records had dementia recorded in more than one field. Conclusion: This audit demonstrates high variability in both the frequency of recording dementia and also the location in the electronic patient record. To ensure consistent recording and ease of retrieval to inform patient care and handover, we propose that the electronic patient record should be modified to reflect paramedics' needs, and those of the healthcare staff who receive and act on the report. Enhanced training for paramedics in the importance and method of recording dementia is required. Future data will enable accurate monitoring of trends in conveyance, and inform justifications for alternative services and novel referral pathways. [ABSTRACT FROM AUTHOR]

Projections suggest that in 50 years' time there will be an additional 8.6 million people over 65 years old in the UK. As a consequence, England will see an increase in older people who have higher levels of dependency, dementia, and comorbidity. People living with dementia are likely to have on average, an additional 4.6 chronic conditions. However, the true extent of comorbidities experienced by people with dementia may be unreported and underdiagnosed as a result of their difficulties in communicating their symptoms or in others failing to observe them. There is evidence to suggest that people with dementia are less likely to access effective treatment and monitoring of their comorbid conditions compared to people without dementia who have the same comorbid conditions. This impacts negatively on their health and wellbeing. This second paper of the series relating to dementia considers some of the complications that may arise when trying to support people with dementia and comorbid conditions, and how this impacts upon the two families introduced in the first paper. [ABSTRACT FROM AUTHOR]

Background: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and nonmalignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods: Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results: The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). Conclusion: The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden. [ABSTRACT FROM AUTHOR]

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life. Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia. [ABSTRACT FROM AUTHOR]

Dementia is a neurological and cognitive condition that affects millions of people around the world. At any given time in the United Kingdom, 1 in 4 hospital beds are occupied by a person with dementia, while about 22% of these hospital admissions are due to preventable causes. In this paper we discuss using Internet of Things (IoT) technologies and in-home sensory devices in combination with machine learning techniques to monitor health and well-being of people with dementia. This will allow us to provide more effective and preventative care and reduce preventable hospital admissions. One of the unique aspects of this work is combining environmental data with physiological data collected via low cost in-home sensory devices to extract actionable information regarding the health and well-being of people with dementia in their own home environment. We have worked with clinicians to design our machine learning algorithms where we focused on developing solutions for real-world settings. In our solutions, we avoid generating too many alerts/alarms to prevent increasing the monitoring and support workload. We have designed an algorithm to detect Urinary Tract Infections (UTI) which is one of the top five reasons of hospital admissions for people with dementia (around 9% of hospital admissions for people with dementia in the UK). To develop the UTI detection algorithm, we have used a Non-negative Matrix Factorisation (NMF) technique to extract latent factors from raw observation and use them for clustering and identifying the possible UTI cases. In addition, we have designed an algorithm for detecting changes in activity patterns to identify early symptoms of cognitive decline or health decline in order to provide personalised and preventative care services. For this purpose, we have used an Isolation Forest (iForest) technique to create a holistic view of the daily activity patterns. This paper describes the algorithms and discusses the evaluation of the work using a large set of real-world data collected from a trial with people with dementia and their caregivers., Competing Interests: This project is supported by a grant from the Department of Health in the UK and NHS England and led by Surrey and Borders Partnership NHS Foundation Trust. This project is also monitored by Innovate UK and IoT UK. Partners involved in the project include: Surrey and Borders Partnership, Alzheimers Society, University of Surrey, Royal Holloway University of London, Kent Surrey Sussex Academic Health Science Network, six local clinical commissioning groups and the following technology innovators: Intelesant, Safe Patient System, Sense.ly, Vision 360/Arqiva, Yecco, Docobo, and Halliday James. The industry partners are also partially funded by the Department of Health for their contribution in this project. There are no patents, products in development or marketed products to declare regarding the work reported in this paper. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

AimTo explore the experiences and challenges for residential care home staff when managing the healthcare needs of their residents, in particular those living with dementia. BACKGROUND: Increasing number of older people, with complex health and social care needs are living in residential care homes. Yet there is limited appreciation of why staff sometimes struggle to manage residents' healthcare needs, or understanding of their working relationship with district nurses (DNs), whose responsibility it is to provide nursing support. METHODS: This PhD study, in a metropolitan area in the United Kingdom, was conducted by an experienced DN and involved three phases. This paper focuses on the first two phases. Phase 1 data included: semi-structured interviews (n=8), reflective field notes based on non-participant observation, documentary analysis of policies, procedures and assessment tools and other contextual data from one care home (case study site). The practitioner researcher reflected on the findings from the case study, in relation to her own knowledge and experience as a DN, focusing in particular on findings that were familiar, or which surprised. In Phase 2 she fed these findings back to other care homes (n=11) to check whether the findings from the single case study were unique or resonated with others. She gathered their feedback through semi-structured interviews with senior care staff (n=14). Data were analysed using thematic data analysis.FindingsFindings highlight the complexity facing residential care homes: high levels of healthcare needs amongst residents, the demands of caring for residents living with dementia, variations in the knowledge and skill set of care staff, inequity in the level of healthcare support, the challenges of building a good relationship with DNs, and funding pressures facing care homes.ImplicationsAny, or all of these factors can prevent care home staff from managing the healthcare needs of their residents.

Background: Dementias in high income countries are set to be the third major burden of disease even as older people are increasingly required to think for themselves how to provide for their lives in retirement. Meanwhile the period of older age continues to extend with increase in life expectancy. This challenge demands an understanding of how cognition changes over an extended period in later life. But studying cognitive ageing in the population faces a difficulty from the fact that older respondents are liable to leave (attrite) before study completion. This study tested three hypotheses: trajectories of cognitive ageing in Britain show an improvement beyond the age of 50; and they are lifted by secular improvement in cognition across cohorts; lastly they are susceptible to distortion due to attrition. Methods and Findings: Using the English Longitudinal Study of Ageing, this paper studied trajectories of episodic memory of Britons aged 50–89 from 2002 to 2013 (N = 5931). Using joint models the analysis found that levels of episodic memory follow a curvilinear shape, not a steady decline, in later life. The findings also revealed secular improvement in cognitive ageing such that as a cohort is being replaced episodic memory levels in the population improve. The analysis lastly demonstrated that failure to simultaneously model attrition can produce distorted pictures of cognitive ageing. Conclusion: Old age in this century is not necessarily a period dominated by cognitive decline. In identifying behavioural factors associated with better cognitive ageing, such as social connections of traditional and online kinds, the paper raises possibilities of mustering an adequate response to the cognition challenge. [ABSTRACT FROM AUTHOR]

Background: Computer gaming has recently been suggested to be associated with benefits for cognition, but its impact on incident dementia remains uncertain. We aimed to investigate the observational associations of playing computer games with incident dementia, cognitive functions, and brain structural measures, and further explore the genetic associations between computer gaming and dementia. Methods: We included 471,346 White British participants without dementia at baseline based on the UK Biobank, and followed them until November 2022. We estimated the risk of dementia using Cox proportional hazard models, and assessed the changes of cognitive functions and brain structural measures using logistic regression models and linear regression models. Mendelian randomization (MR) analyses were performed to examine the association between genetically determined computer gaming and dementia. Results: High frequency of playing computer games was associated with decreased risk of incident dementia (HR, 0.81 [95% CI: 0.69, 0.94]). Individuals with high frequency of playing computer games had better performance in prospective memory (OR, 1.46 [1.26, 1.70]), reaction time (beta, -0.195 [-0.243, -0.147]), fluid intelligence (0.334 [0.286, 0.382]), numeric memory (0.107 [0.047, 0.166]), incorrect pairs matching (-0.253 [-0.302, -0.203]), and high volume of gray matter in hippocampus (0.078 [0.023, 0.134]). Genetically determined high frequency of playing computer games was associated with a low risk of dementia (OR, 0.37 [0.15, 0.91]). Conclusions: Computer gaming was associated with a decreased risk of dementia, favorable cognitive function, and better brain structure, suggesting that computer gaming could modulate cognitive function and may be a promising target for dementia prevention. [ABSTRACT FROM AUTHOR]

Background: Recent evidence suggests that anosognosia or unawareness of cognitive impairment in Alzheimer's Disease (AD) may be explained by a disconnection between brain regions involved in accessing and monitoring information regarding self and others. It has been demonstrated that AD patients with anosognosia have reduced connectivity within the default mode network (DMN) and that anosognosia in people with prodromal AD is positively associated with bilateral anterior cingulate cortex (ACC), suggesting a possible role of this region in mechanisms of awareness in the early phase of disease. We hypothesized that anosognosia in AD is associated with an imbalance between the activity of large-scale resting-state functional magnetic resonance imaging (fMRI) networks, in particular the DMN, the salience network (SN), and the frontoparietal network (FPN). Methods: Sixty patients with MCI and AD dementia underwent fMRI and neuropsychological assessment including the Anosognosia Questionnaire Dementia (AQ-D), a measure of anosognosia based on a discrepancy score between patient's and carer's judgments. After having applied Independent Component Analysis (ICA) to resting fMRI data we performed: (i) correlations between the AQ-D score and functional connectivity in the DMN, SN, and FPN, and (ii) comparisons between aware and unaware patients of the DMN, SN, and FPN functional connectivity. Results: We found that anosognosia was associated with (i) weak functional connectivity within the DMN, in posterior and middle cingulate cortex particularly, (ii) strong functional connectivity within the SN in ACC, and between the SN and basal ganglia, and (iii) a heterogenous effect concerning the functional connectivity of the FPN, with a weak connectivity between the FPN and PCC, and a strong connectivity between the FPN and ACC. The observed effects were controlled for differences in severity of cognitive impairment and age. Conclusion: Anosognosia in the AD continuum is associated with a dysregulation of the functional connectivity of three large-scale networks, namely the DMN, SN, and FPN. [ABSTRACT FROM AUTHOR]

Background: People living with dementia in care homes are regularly admitted to hospital. The transition between hospitals and care homes is an area of documented poor care leading to adverse outcomes including costly re-hospitalisation. This review aims to understand the experiences and outcomes of care for people living with dementia who undergo this transition from the perspectives of key stakeholders; people living with dementia, their families and health care professionals.Methods: A systematic search was conducted on the CINAHL, ASSIA, EMBASE, MEDLINE, PsychINFO, and Scopus databases without any date restrictions. We hand searched reference lists of included papers. Papers were included if they focused on people living with dementia moving from hospital to a short or long term care setting in the community including sub-acute, rehabilitation, skilled nursing facilities or care homes. Titles, abstracts and full texts were screened. Two authors independently evaluated study quality using a checklist. Themes were identified and discussed to reach consensus.Results: In total, nine papers reporting eight studies met the inclusion criteria for the systematic review. A total of 257 stakeholders participated; 37 people living with dementia, 95 family members, and 125 health and social care professionals. Studies took place in Australia, Canada, United Kingdom (UK), and the United States of America (US). Four themes were identified as factors influencing the experience and outcomes of the transition from the perspectives of stakeholders; preparing for transition; quality of communication; the quality of care; family engagement and roles.Conclusion: This systematic review presents a compelling case for the need for robust evidence to guide best practice in this important area of multi-disciplinary clinical practice. The evidence suggests this transition is challenging for all stakeholders and that people with dementia have specific needs which need attention during this period.Trial Registration: PROSPERO Registration Number: CRD42017082041 . [ABSTRACT FROM AUTHOR]

The numbers of people with dementia are set to increase, however, people with dementia do not live in isolation and any intervention is required to support their family carers also Newbronner et al. 2013. Dementia UK offers specialist one-to-one support and expert advice in the form of Admiral Nursing AN, first piloted in 1991 and are the only group of qualified nurses in the UK who focus on working with families affected by dementia. Once a diagnosis of dementia has been made, interventions structured around a family-centred approach provide a framework to help unite families, whilst still recognising individual values. This type of collective approach can help reduce conflict and improve relationships within the family. AN has evolved from delivering an intervention specifically aimed at supporting family carers to one that supports the whole family through a case management approach Harrison Dening et al. 2017. Case management has a long and successful history in supporting people with long term conditions and people with a diagnosis of severe mental illness Challis et al. 2010. Case management is a relatively new concept in dementia with early UK research being inconclusive Iliffe et al. 2014, however, it is proving to be a successful model in Holland Van Mierlo et al. 2014: MacNeil Vroomen et al. 2016. The evidence base for AN, as with the majority of specialist nursing roles, is scant. So it became a priority of Dementia UK to develop the evidence base for AN whilst also supporting the nurses to develop the skills, tools, time and impetus to collect data about their service activity and outcomes which could build the evidence base for the model. Commissioners and employers need data that is relevant to their expected outcomes and, as the AN community grows, it is increasingly important to collect data consistently in order to identify and promote effective AN models. Whilst current evaluation methodology may focus on undergraduate and postgraduate nursing course curriculum; a wider appreciation of the importance of evaluation in practice is required Moule et al, 2016. This paper will present results of a service evaluation project; Getting Evidence into Admiral Nursing Services GEANS, a mixed methods approach to demonstrate the evidence for the AN case management approach in supporting families affected by dementia. GEANS is a national programme, funded by Dementia UK aimed to support a cohort of AN teams to evaluate their services and to demonstrate the outcomes and impact on families affected by dementia. GEANS is a co-produced evaluation framework and defines outcomes for Admiral Nursing with families and in supporting best practice in other professionals. Outcomes reflect the domains of the NHS Outcomes Framework for England and the Adult Social Care Outcomes Framework. Three themes focus data collection; 1. Improved quality of life for carers and people with dementia. 2. Positive experience for families of AN Services 3. Cost efficiencies in health and social care costs. The paper will be supported through presentation of a local service case study from the Midlands, United Kingdom. [ABSTRACT FROM AUTHOR]

Introduction: Incontinence is a major problem for people with dementia (PWD) and their family/friend caregivers, often causing substantial harm, including residential care admission. The incontinence needs of PWD are complex and different from those of people without dementia. The aim of this study was to investigate carer and nurse perceptions of continence service provision and potential improvements. Methods: A secondary analysis of qualitative data was undertaken. Semi-structured interviews (n = 45) were undertaken with PWD, family caregivers and healthcare professionals (continence or dementia nurses) in the UK. PWD and caregivers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Framework analysis was used. The COREQ Research guideline statement assists reporting. Results: Four themes were found. Firstly, there was a lack of awareness of the service and waiting time. Many caregivers were unaware of continence services and dementia nurses often viewed it as a pad provision service. Caregivers reported long waits not meeting their urgent needs. Secondly, product provision was often inadequate. Most caregivers self-purchased all or many products and substantial variation in product provision was found. The number of products provided was often inadequate. Thirdly, a sense that "nothing can be done" was observed by some nurses and caregivers. Caregivers believed that, if nothing else, care information should be provided. Finally, suggestions for improvements were made, including proactive service signposting, joint clinics with dementia services, improved information before crisis point, dementia training for continence nurses and improved product provision. Conclusion: Continence service inadequacies for PWD and caregivers have been reported for many years. This study demonstrates service provision remains unsatisfactory in the UK. Stakeholders propose a range of service improvements. It highlights that listening to the voices of PWD, caregivers and nurses is crucial for services seeking to improve continence services for PWD living at home. [ABSTRACT FROM AUTHOR]

Dementia has not traditionally been conceptualised as a terminal or life-limiting condition. Yet, dementia can significantly reduce a person's survival time from the onset of symptoms and has been shown to be similar to that of some cancers. Alongside this, with the growing number of cases of dementia expected over the coming decades, we can also expect to see the number of people dying with or from dementia increasing. Supporting good quality palliative care for people with dementia will be required by all clinicians in all care settings. This final paper in the series follows the case studies of two people with dementia as they reach the end of their lives. [ABSTRACT FROM AUTHOR]

This article reports on the lack of support in Great Britain regarding the rising number of people with Down's syndrome who have dementia. The Department of Health in England initiated efforts to improve medical care for people with Down's syndrome. However, a paper found the vulnerability of people with Down's syndrome to Alzheimer's disease.

Personhood discourses in dementia care have gained prominence and current care home standards mandate that care should be “person-centred”. However, it is unclear how the personhood of staff is construed within the care relationship. This paper aims to explore how the personhood of paid carers of people with dementia can be understood by focussing on the views and experiences of care home staff. We undertook a secondary qualitative analysis of interviews with 25 paid care staff in England, conducted as part of the MARQUE (Managing Agitation and Raising QUality of lifE) study. The authors inductively developed themes around the topic of personhood for staff, contrasting management and care staff perspectives. We found that many care staff are not identified as persons in their own right by their employing institutions, and that there is a general lack of acknowledgment of the moral work of caring that occurs within formal care work. This oversight can reduce the complex relationships of care work to a series of care tasks, challenges care workers’ self-worth and self-efficacy, and impede their efforts to deliver person-centred care. We conclude that care staff status as persons in their own right should be explicitly considered in quality standards and supported by employers’ policies and practices, not simply for their role in preserving the personhood of people with dementia but for their own sense of valued personhood. Enhancing staff personhood may also result in improved care. [ABSTRACT FROM AUTHOR]

As the population continues to age and the incidence of dementia and associated costs increases, there will be a greater need for unpaid care with research suggesting that one in three of us will become a carer for someone with dementia during our lifetime. It is estimated that there are in excess of 700,000 people in the UK acting as primary unpaid carers for people living with dementia, all of whom make a substantial contribution to their care and support. Carers of people living with dementia can experience high levels of carer burden alongside poor health and wellbeing because of their caring roles. However, they may not identify themselves as carers or be recognised as such by health and social care professionals. Consequently, they may not have access to the support they need, thus identifying and valuing unpaid carers is the first step in supporting them. Community nurses are well placed to do this. This sixth paper relating to dementia considers the contribution of unpaid carers in the context of the families of Dhriti Singh and Gregory Brewin, who we have been following throughout this series. [ABSTRACT FROM AUTHOR]

Background: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed. Methods: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model. Results: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings. Conclusions: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects. Trial registration: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/). [ABSTRACT FROM AUTHOR]

Background: Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis. Methods: We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis. Results: Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis. Conclusions: In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers. [ABSTRACT FROM AUTHOR]

Internationally, interest is developing in the challenges of developing evidence-based guidelines for social work practice. The paper reports on the process of establishing the UK's first joint health and social care evidence-based practice guideline, which is in dementia care. The paper addresses the methodological and procedural challenges of reviewing, meta-analysing and synthesizing knowledge for health and social care given the contrasting histories of the two sectors in relation to the emergence of evidence-based practice, Dementia care is a complex domain within which social and clinical perspectives intersect, reinforcing the desirability of producing 'joined up' health and social care practice guidelines that are relevant to integrated services. It is suggested that the exemplar of producing a joint health and social care guideline for dementia may be a model for future development of practice guidelines. Some of the main recommendations are presented to illustrate the character of the joint guideline, lessons are drawn for future guideline development, and implications for policy and practice implementation are considered. [ABSTRACT FROM AUTHOR]

Background: Differences in mortality and health experience across regions are well recognised and UK government policy aims to address this inequality. Methods combining life expectancy and health have concentrated on specific areas, such as self-perceived health and dementia. Few have looked within country or across different areas of health. Self-perceived health, self-perceived functional impairment and cognitive impairment are linked closely to survival, as well as quality of life. This paper aims to describe regional differences in healthy life expectancy using a variety of states of health and wellbeing within the MRC Cognitive Function and Ageing Study (MRC CFAS). Methods: MRC CFAS is a population based study of health in 13,009 individuals aged 65 years and above in five centres using identical study methodology. The interviews included self-perceived health and measures of functional and cognitive impairment. Sullivan's method was used to combine prevalence rates for cognitive and functional impairment and life expectancy to produce expectation of life in various health states. Results: The prevalence of both cognitive and functional impairment increases with age and was higher in women than men, with marked centre variation in functional impairment (Newcastle and Gwynedd highest impairment). Newcastle had the shortest life expectancy of all the sites, Cambridgeshire and Oxford the longest. Centre differences in self-perceived health tended to mimic differences in life expectancy but this did not hold for cognitive or functional impairment. Conclusion: Self-perceived health does not show marked variation with age or sex, but does across centre even after adjustment for impairment burden. There is considerable centre variation in self-reported functional impairment but not cognitive impairment. Only variation in self-perceived health relates to the ranking of life expectancy. These data confirm that quite considerable differences in life experience exist across regions of the UK beyond basic life expectancy. [ABSTRACT FROM AUTHOR]

Background: the care of older people with dementia is often complicated by physical comorbidity and polypharmacy, but the extent and patterns of these have not been well described. This paper reports analysis of these factors within a large, cross-sectional primary care data set. Methods: data were extracted for 291,169 people aged 65 years or older registered with 314 general practices in the UK, of whom 10,258 had an electronically recorded dementia diagnosis. Differences in the number and type of 32 physical conditions and the number of repeat prescriptions in those with and without dementia were examined. Age-gender standardised rates were used to calculate odds ratios (ORs) of physical comorbidity and polypharmacy. Results: people with dementia, after controlling for age and sex, had on average more physical conditions than controls (mean number of conditions 2.9 versus 2.4; P < 0.001) and were on more repeat medication (mean number of repeats 5.4 versus 4.2; P < 0.001). Those with dementia were more likely to have 5 or more physical conditions (age-sex standardised OR [sOR] 1.42, 95% confidence interval (CI) 1.35-1.50; P < 0.001) and were also more likely to be on 5 or more (sOR 1.46; 95% CI 1.40-1.52; P < 0.001) or 10 or more repeat prescriptions (sOR 2.01; 95% CI 1.90-2.12; P < 0.001). Conclusions: people with dementia have a higher burden of comorbid physical disease and polypharmacy than those without dementia, even after accounting for age and sex differences. Such complex needs require an integrated response from general health professionals and multidisciplinary dementia specialists. [ABSTRACT FROM AUTHOR]

Background: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co‐produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. Methods: Two virtual and two face‐to‐face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face‐to‐face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Results: Forty stakeholders attended four workshops. Workshops provided step‐by‐step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one‐sided, two‐half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty‐two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p <.001) and inequalities (p <.001). Discussion: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. Patient or Public Contribution: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

The aim of this project was to explore the understanding and awareness of dementia in the Pakistani-origin community in a deprived urban region of the UK. The study was unique in accessing and interviewing Pothwari speakers, some of whom could not read or understand spoken English. Data generated from an earlier study were used to construct five scenarios, which were used as the basis for face-to-face semi-structured interviews with 11 male and female participants from the Pakistani-origin community spanning two generations. Braun and Clarke's six phases of thematic analysis were used to analyse the data to answer the research questions. Themes constructed from these interviews indicated a lack of awareness and understanding of dementia, a range of attitudes and assumptions, reluctance to seek external support, and a significant role for the cultural background in shaping the individuals' responses. The study found that poor understanding, cultural differences, and language issues presented barriers to accessing services in the British Pakistani community, particularly among those who had been born in Pakistan and/or spoke Pothwari in preference to English. Services and information may need to be offered by Pothwari speakers in order to reach this neglected sector of the population. [ABSTRACT FROM AUTHOR]

Background: Long-term exposure to air pollution has been found to contribute to the development of cognitive decline. Our study aimed to assess the association between various air pollutants and cognitive impairment and dementia. Additionally, explore the modification effects of lifestyle and genetic predisposition. Methods: The exposure levels to various air pollutants, including particulate matter (PM) with diameters ≤ 2.5 (PM2.5), ≤ 10 (PM10), and between 2.5 and 10 μm (PM2.5−10) and nitrogen oxides (NO and NO2) were identified. An air pollution score (APS) was calculated to evaluate the combined exposure to these five air pollutants. A genetic risk estimate and healthy lifestyle score (HLS) were also generated. The Cox regression model adjusted by potential confounders was adopted to access the association between pollution exposure and cognitive decline, and several sensitivity analyses were additionally conducted to test the robustness. Results: The combined exposure to air pollutants was associated with an increased risk of incident cognitive decline. Compared with the low exposure group, the hazard ratio (HR) and 95% confidence interval (CI) for all-cause dementia, Alzheimer's dementia, vascular dementia, and mild cognitive impairment (MCI) in those exposed to the highest levels of air pollutants were respectively 1.07 (95% CI: 1.04 to 1.09), 1.08 (95% CI: 1.04 to 1.12), 1.07 (95% CI: 1.02 to 1.13), and 1.19 (95% CI: 1.12 to 1.27). However, the modification effects from genetic predisposition were not widely observed, while on the contrary for the healthy lifestyle. Our findings were proven to be reliable and robust based on the results of sensitivity analyses. Conclusions: Exposure to air pollution was found to be a significant contributing factor to cognitive impairment and dementia, and this association was not easily modified by an individual's genetic predisposition. However, adopting a healthy lifestyle may help to manage the risk of cognitive decline related to air pollution. [ABSTRACT FROM AUTHOR]

Background: A common complication after stroke is development of cognitive impairment and dementia. However, effective strategies for reducing the risk of developing these problems remain undefined. Potential strategies include intensive lowering of blood pressure (BP) and/or lipids. This paper summarises the baseline characteristics, statistical analysis plan and feasibility of a randomised control trial of blood pressure and lipid lowering in patients post-stroke with the primary objective of reducing cognitive impairment and dementia.Methods: The Prevention Of Decline in Cognition After Stroke Trial (PODCAST) was a multi-centre prospective randomised open-label blinded-endpoint controlled partial-factorial internal pilot trial running in secondary and primary care. Participants without dementia were enrolled 3-7 months post ischaemic stroke or spontaneous intracerebral haemorrhage, and randomised to intensive versus guideline BP lowering (target systolic BP <125 mmHg versus <140 mmHg); patients with ischaemic stroke were also randomised to intensive or guideline lipid lowering (target LDL cholesterol <1.4 mmol/L versus <3 mmol/L). The primary outcome was the Addenbrooke's Cognitive Examination-Revised; a key secondary outcome was to assess feasibility of performing a large trial of one or both interventions. Data are number (%) or mean (standard deviation). The trial was planned to last for 8 years with follow-up between 1 and 8 years. The plan for reporting the main results is included as Additional file 2.Results: 83 patients (of a planned 600) were recruited from 19 UK sites between 7 October 2010 and 31 January 2014. Delays, due to difficulties in the provision of excess treatment costs and to complexity of follow-up, led to few centres taking part and a much lower recruitment rate than planned. Patient characteristics at baseline were: age 74 (SD 7) years, male 64 (77 %), index stroke ischaemic 77 (93 %), stroke onset to randomisation 4.5 [SD 1.3] months, Addenbrooke's Cognitive Examination-Revised 86 (of 100, SD 8), Montreal Cognitive Assessment 24 (of 30, SD 3), BP 147/82 (SD 19/11) mmHg, total cholesterol 4.0 (SD 0.8) mmol/L and LDL cholesterol 2.0 (SD 0.7) mmol/L, modified Rankin Scale 1.1 (SD 0.8).Conclusion: Limited recruitment suggests that a large trial is not feasible using the current protocol. The effects of the interventions on BP, lipids, and cognition will be reported in the main publication.Trial Registration: ISRCTN85562386 registered on 23 September 2009. [ABSTRACT FROM AUTHOR]

There is no doubt that families affected by dementia have faced many new challenges as a result of Covid-19. The suspension and closure of support services, enforced lockdown and changes to important daily routines have influenced the way in which families affected by dementia have gained support. Health and social care services have recognised the need to adapt by incorporating telehealth as a substitute to existing care models; however, some have faced challenges in providing such care to this patient population. This paper explores the use of telephone helplines as a means of support for families affected by dementia during Covid-19, commenting on the advantages and disadvantages and reflecting on the experience of a dementia specialist helpline nurse. [ABSTRACT FROM AUTHOR]

Background: Dementia is a serious and growing health problem, and since most people with dementia live at home, caring responsibilities generally fall on family members. Caregivers are often inadequately supported by formal health services and have poorer psychological and physical health. Our study aimed to compare the contributions of publications from different countries, institutions and authors and present a bibliometric analysis to determine the hotspots and trends in research concerning the health of and interventions for family dementia caregivers.Methods: Studies published during 1988-2018 were extracted from the Science Citation Index Expanded of the Web of Science. Each abstract of publications was evaluated to obtain the basic information. A bibliometric analysis was used to evaluate the number or cooperation networks of publications, countries, institutions, journals, citations, authors, references, and keywords. The resulting articles were analyzed descriptively, and the publication keywords were visualized using VOSviewer.Results: Five hundred forty-two articles were identified. The annual number of relevant publications has steadily increased since approximately 2006. The USA has the highest number of publications (36.2%), followed by the UK (12.9%). China entered the field late, but research conducted in China has rapidly developed. The most productive institution, journal, and author in this field are University College London, the Journal of the American Geriatrics Society, and Orrell M from the UK, respectively. A co-occurrence analysis of the keywords reveals a mainstream research focus on burden, depression, quality of life, and corresponding interventions for people with dementia caregivers. The keywords "psychosocial intervention", "long-term", "e-learning/online", "communication", and "qualitative research" reflect the latest hotspots, appearing in approximately 2017-2018.Conclusion: Our study details the performance statistics, main topics and trends research on the health of and interventions for dementia caregivers from 1988 to 2018 and provides a comprehensive analysis. [ABSTRACT FROM AUTHOR]

Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.

Aimee Spector11Faculty of Brain Sciences, Division of Psychology and Language Sciences, Research Department of Clinical, Educational and Health Psychology, University College London, London, WC1E 6BT, UK; 2Centre for Chronic Illness and Ageing, Institute of Life Course Development, School of Human Sciences, University of Greenwich, Old Royal Naval College, London, SE10 9LS, UK*These authors contributed equally to this workCorrespondence: Aimee Spector, Faculty of Brain Sciences, Division of Psychology and Language Sciences, Research Department of Clinical, Educational and Health Psychology, University College London, Gower Street, London, WC1E 6BT, UK, Tel +44 020 7679 1844, Email [email protected] Aim: Informal caregivers are vital in assisting people with dementia. However, this role can significantly impact caregivers' lives and interventions to support them are crucial. This study aimed to develop a United Kingdom version of the Dementia Awareness for Caregivers (DAC) course and to investigate the feasibility, acceptability, and impact of delivering the course online to informal dementia caregivers.Methods: This study comprised a mixed-methods pre-post intervention parallel group design. Fifty-one informal dementia caregivers were randomized into either an experimental (receiving the DAC course) or control group (treatment as usual). Outcomes relating to perceived burden, attitude, competence, relationship quality and positive caregiving aspects were measured at baseline and follow-up, alongside statistics relating to recruitment, retention, attendance, and adherence. Semi-structured interviews were conducted to explore qualitative acceptability and impact among caregivers who completed the DAC course.Results: The study found high retention and attendance rates with low levels of unexplained attrition. Analysis indicated positive change for four of the outcome measures in favor of the DAC course, however this was not statistically significant. Qualitative analysis generated 11 subthemes organized into four overarching main themes; "acceptability of course", "impact of course on caregivers", "using skills from course" and "outcome measures".Conclusion: Findings provide promising evidence for the feasibility, acceptability and impact of the Dementia Awareness for Caregivers course when delivered online to informal caregivers in the United Kingdom. [ABSTRACT FROM AUTHOR]

Age‐related hearing loss frequently precedes or coexists with mild cognitive impairment and dementia. The role specific neuropathologies play in this association, as either a cause or a consequence, is unclear. We therefore aimed to investigate whether specific dementia related neuropathologies were associated with hearing impairment in later life. We analysed data on ante‐mortem hearing impairment with post‐mortem neuropathological data for 442 participants from the Brains for Dementia Research Cohort. Binary logistic regression models were used to estimate the association of hearing impairment with the presence of each dementia‐related neuropathology overall, and with specific staged changes. All analyses adjusted for age and sex, and several sensitivity analyses were conducted to test the robustness of findings. Presence and density of neuritic plaques were associated with higher odds of hearing impairment ante‐mortem (OR = 3.65, 95% CI 1.78–7.46 for frequent density of plaques). Presence of any LB disease was likewise associated with hearing impairment (OR = 2.10, 95% CI 1.27–3.48), but this did not increase with higher cortical pathology (OR = 1.53, 95% CI 0.75–3.11). Nonspecific amyloid deposition, neurofibrillary tangle staging, overall AD neuropathology level, and cerebrovascular disease were not clearly associated with increased risks of hearing impairment. Our results provide some support for an association between dementia‐related neuropathology and hearing loss and suggest that hearing loss may be associated with a high neuritic plaque burden and more common in Lewy body disease. [ABSTRACT FROM AUTHOR]

Background: Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme. Methods: A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. Discussion: Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia. Trial registration: This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377. [ABSTRACT FROM AUTHOR]

Background: Delirium affects over 20% of all hospitalised older adults. Delirium is associated with a number of adverse outcomes following hospital admission including cognitive decline, anxiety and depression, increased mortality and care needs. Previous research has addressed prevention of delirium in hospitals and care homes, and there are guidelines on short-term treatment of delirium during admission. However, no studies have addressed the problem of longer-term recovery after delirium and it is currently unknown whether interventions to improve recovery after delirium are effective and cost-effective. The primary objective of this feasibility study is to test a new, theory-informed rehabilitation intervention (RecoverED) in older adults delivered following a hospital admission complicated by delirium to determine whether (a) the intervention is acceptable to individuals with delirium and (b) a definitive trial and parallel economic evaluation of the intervention are feasible. Methods: The study is a multi-centre, single-arm feasibility study of a rehabilitation intervention with an embedded process evaluation. Sixty participants with delirium (aged > 65 years old) and carer pairs will be recruited from six NHS acute hospitals across the UK. All pairs will be offered the intervention, with follow-up assessments conducted at 3 months and 6 months post-discharge home. The intervention will be delivered in participants' own homes by therapists and rehabilitation support workers for up to 10 intervention sessions over 12 weeks. The intervention will be tailored to individual needs, and the chosen intervention plan and goals will be discussed and agreed with participants and carers. Quantitative data on reach, retention, fidelity and dose will be collected and summarised using descriptive statistics. The feasibility outcomes that will be used to determine whether the study meets the criteria for progression to a definitive randomised controlled trial (RCT) include recruitment, delivery of the intervention, retention, data collection and acceptability of outcome measures. Acceptability of the intervention will be assessed using in-depth, semi-structured qualitative interviews with participants and healthcare professionals. Discussion: Findings will inform the design of a pragmatic multi-centre RCT of the effectiveness and cost-effectiveness of the RecoverED intervention for helping the longer-term recovery of people with delirium compared to usual care. Trial registration: The feasibility study was registered: ISRCTN15676570 [ABSTRACT FROM AUTHOR]

Background The Whitehall II (WHII) study of British civil servants provides a unique source of longitudinal data to investigate key factors hypothesized to affect brain health and cognitive ageing. This paper introduces the multi-modal magnetic resonance imaging (MRI) protocol and cognitive assessment designed to investigate brain health in a random sample of 800 members of the WHII study. Methods/design A total of 6035 civil servants participated in the WHII Phase 11 clinical examination in 2012-2013. A random sample of these participants was included in a sub-study comprising an MRI brain scan, a detailed clinical and cognitive assessment, and collection of blood and buccal mucosal samples for the characterisation of immune function and associated measures. Data collection for this sub-study started in 2012 and will be completed by 2016. The participants, for whom social and health records have been collected since 1985, were between 60-85 years of age at the time the MRI study started. Here, we describe the pre- specified clinical and cognitive assessment protocols, the state-of-the-art MRI sequences and latest pipelines for analyses of this sub-study. Discussion The integration of cutting-edge MRI techniques, clinical and cognitive tests in combination with retrospective data on social, behavioural and biological variables during the preceding 25 years from a well-established longitudinal epidemiological study (WHII cohort) will provide a unique opportunity to examine brain structure and function in relation to age- related diseases and the modifiable and non-modifiable factors affecting resilience against and vulnerability to adverse brain changes. [ABSTRACT FROM AUTHOR]

Background In the UK care homes are one of the main providers of long term care for older people with dementia. Despite the recent increase in care home research, residents with dementia are often excluded from studies. Care home research networks have been recommended by the Ministerial Advisory Group on Dementia Research (MAGDR) as a way of increasing research opportunities for residents with dementia. This paper reports on an evaluation of the feasibility and early impact of an initiative to increase care home participation in research. Methods A two phase, mixed methods approach was used; phase 1 established a baseline of current and recent studies including the National Institute for Health Research portfolio. To explore the experiences of recruiting care homes and research participation, interviews were conducted with researchers working for the Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) and care home managers. In phase 2, four DeNDRoN area offices recruited care homes to a care home networks for their region. The care home networks were separate from the DeNDRoN research network. Diaries were used to document and cost recruitment; DeNDRoN staff were interviewed to understand the barriers, facilitators and impact of the care home networks. Results Thirty three current or recent studies were identified as involving care homes as care home specific studies or those which included residents. Further details of care home recruitment were obtained on 20 studies by contacting study teams. Care home managers were keen to be involved in research that provided staff support, benefits for residents and minimal disruptive. In phase 2, 141 care homes were recruited to the care home research networks, through corporate engagement and individual invitation. Pre-existing relationships with care homes facilitated recruitment. Sites with minimal experience of working with care homes identified the need for care home training for researchers. Conclusions Phase 1 review revealed a small but increasing number of studies involving care homes. Phase 2 demonstrated the feasibility of care home research networks, their potential to increase recruitment to research and develop partnerships between health services and care homes, but highlighted the need for care home training for researchers. [ABSTRACT FROM AUTHOR]

Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a 'care-gap'. Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. Jossey-Bass, Oxford, ) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of 'everyday life work' (targets 1 and 2) and 'biographical work' (target 3), with inclusion of but less emphasis on specific 'illness work' (targets 4, 5). We argue that self-management is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia. [ABSTRACT FROM AUTHOR]