Search

Objectives: The STrAtegies for RelaTives (START) intervention is effective and cost-effective in supporting family carers of people with dementia. It is currently not available to all eligible carers in England. What would be the impacts on service costs and carer health-related quality of life if START was provided to all eligible carers in England, currently and in future?, Methods: Effectiveness and cost-effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health-related quality of life outcomes between 2015 (base year for projections) and 2040., Results: Scaling-up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6 years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality-adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883., Conclusions: Scaling-up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence-based interventions that help them to maintain this role, such as START, should be available across the country., (© 2024 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Aim: This study aimed to examine trends in prescribing of antidementia drugs in primary care in England between 2009 and 2019, and investigate the impact of deprivation, regional demography and disease prevalence on prescribing practices., Methods: Analysis of publicly available government data from various sources pertaining to primary care prescribing and demographics was conducted. All primary care prescription data pertaining to antidementia drugs in England between 2009 and 2019 were extracted and adjusted for inflation and population changes. Data across English clinical commissioning regions were compared to explore the association between prescribing trend, deprivation, regional demography and dementia prevalence., Results: The number of prescription items for antidementia drugs in England increased by approximately 3-fold (195.4%) from 24 items/1000 population in 2009 to 70.9 items/1000 population in 2019. In 2019, the least-deprived areas had approximately twice the rate of prescribing of antidementia drugs compared to the most-deprived areas (median [IQR] values of 46.7 [36.6-64.8] vs 91.23 [76.2-95.1] items/1000 population, respectively). In the multivariable analysis, the number of prescription items showed an inverse relationship with deprivation (coefficient -0.046, 95% CI -0.47 to -0.045) after adjustment for number of populations aged 65+ years and prevalence of dementia., Conclusions: The 3-fold rise in the number of prescription items for antidementia drugs in the study period reflects the policy emphasis on early diagnosis and treatment of dementia. Higher rates of prescribing in the least-deprived areas may be reflective of better and early diagnoses and access to treatments. Such inequality in access to the treatments needs to be investigated further., (© 2021 The Authors. British Journal of Clinical Pharmacology published by John Wiley & Sons Ltd on behalf of British Pharmacological Society.)

The notion of stigma and its influence on the understanding of dementia has commonly been recognized as a great challenge to seeking healthcare services for South Asians in England. The aim of this commentary is to examine how Muslims view, understand and tackle dementia stigma in the context of revivalist Islam, especially among Bangladeshi Muslims within their British communities. This article reflects on the interrelationship between dementia and revivalist Islam among Bangladeshi family caregivers and addresses the question of how revivalist Islam is a significant source of understanding dementia and tackling stigma. Bangladeshi caregivers show a practical attitude toward dementia which is generally acknowledged as a medical symptom, and for which family caregivers voluntarily seek healthcare support. This piece highlights underlying principles of caregivers religious beliefs in the acceptance of dementia as a disease, and in help-seeking which is influenced by Qur'anic verses and Prophetic traditions. Bangladeshi caregivers' religious beliefs intertwine with their knowledge, perception, and attitudes toward caregiving for their relatives with dementia. Revivalist Islam offers family caregivers an opportunity to explore their inner wisdom through the challenging journey of caregiving for their family members with dementia., (© 2020 John Wiley & Sons, Ltd.)

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life., Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings., Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions., Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom., (© 2020 John Wiley & Sons Ltd.)

Presents an article on pressing issues in the dementia and dementia services symposium at the Royal College of Physicians in London, England on January 28 to 29, 1999. Geographical inequities involving care for the elderly; Information on a survey conducted by the Alzheimer's Disease Society on Health Authorities' plans and purchasing intentions for dementia services.

Rationale, Aims and Objectives: Although Bangladeshis are three times more likely to be carers than White British, Bangladeshi family carers are the most deprived, neglected, and effectively a hidden group in the United Kingdom. 1 There is a paucity of research within the Bangladeshi community that is capable of explaining and predicting the experiences and concerns of Bangladeshi family carers providing care for their relatives with dementia. The purpose of this study is to explore the perspectives of Bangladeshi family carers' knowledge and day-to-day experiences living in England., Methods: This is a qualitative study involving semistructured face-to-face interviews with six Bangladeshi family carers living in London and Portsmouth. Interviews were recorded with the consent and transcribed verbatim. Data were managed by using NVivo software, and thematic analysis was performed., Results: This paper explores that most carers have a lack of knowledge and awareness of the symptoms of dementia. The results of this study are in contrast to previous studies, where South Asian carers perceived dementia as being possessed by evil spirits or God's punishment for previous life's sins; this study reveals that Bangladeshi family carers believed dementia was a medical condition. Unlike earlier South Asian studies, however, all family carers in this study also believed that there was no stigma attached to dementia., Conclusions: Further research is warranted to investigate the religious beliefs, familism, and interpersonal motives as theoretical perspectives to explain how Bangladeshi family carers negotiate and construct their caregiving roles for their relatives with dementia., (© 2019 John Wiley & Sons, Ltd.)

Background: The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources.Methods: MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations.Discussion: Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent. Design/methodology/approach: This study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners. Findings: Findings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia. Research limitations/implications: Despite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection. Practical implications: Whilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents' well-being and quality of life. Originality/value: This paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia. [ABSTRACT FROM AUTHOR]

Extra care housing (ECH) is a type of housing with care and support designed to enable older people to age in place. Approximately one fifth of residents living in ECH are living with dementia and yet, there remains gaps as to how best to support people to live well with dementia in the context. ECH stock across the United Kingdom (UK) includes a diverse range of options that can be grouped into integrated, specialist and separated accommodation. Integrated models involve residents with dementia living alongside residents without dementia. Specialist ECH offer accommodation exclusively for people living with dementia. Separated models offer a separate area for residents with dementia within a larger, integrated site. How these different models work for residents living with dementia is little known and has remained a significant gap in knowledge that impairs both professionals and people living with dementia when choosing housing and care. This paper reports on findings from a large study of residents living with dementia in ECH. The focus is on the potential benefits and challenges of different models of provision. Data were generated from interviews with 100 participants (residents, family members, staff, and adult social care professionals) at eight case study sites across England. Findings demonstrated that there are potential benefits and challenges within each model, but the limited diversity of stock limits choice. Multiple variables beyond the model of provision affect the lived experience, meaning that there is no universal model of optimal support. Rather, the approach and resources of each site is more important than the model of provision. Suggestions for future research directions are considered., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Transport can pose substantial challenges for people with dementia. Dementia-friendly approaches seek to encourage public transport use by enhancing people and places through educational initiatives and architectural augmentation respectively. The Greater Manchester Combined Authority is implementing dementia-friendliness within a major re-municipalisation of public transport. Reporting findings from a journeying ethnography of bus travel with passengers with dementia, this paper critiques contemporary friendly transport. It argues that buses are vital sociospatial infrastructures, the friendliness of which is constituted by entangled socio-material and political economic forces. The re-municipalisation of friendly transport requires a radical civic offer of social de-segregation and equitable development., (Copyright © 2024 The Author. Published by Elsevier Ltd.. All rights reserved.)

Why you should read this article: • To understand the complexity of the needs of people with delirium superimposed on dementia • To enhance your knowledge of second-generation activity theory • To recognise the consequences of the separation of physical health and mental healthcare. Background: Delirium superimposed on dementia (DSD) affects the physical, mental and cognitive well-being of the person. The separation of physical health and mental health means that the care of people with DSD is at odds with the multifaceted aetiology and presentation of the condition. There is a lack of research on DSD from a mental health perspective. Aim: To explore UK mental health nurses’ experiences of providing care for people with DSD. Method: Individual semi-structured interviews were conducted with seven mental health nurses from one NHS trust in England. Participants’ experiences were considered through the lens of second-generation activity theory. Data were analysed using framework analysis. Findings: Six themes were identified: awareness of guidance and tools; guidance or tools as ‘paper exercises’; knowing the patient; the multidisciplinary team; care burden; and mental health versus physical health. Conclusion: When providing care for people with DSD, mental health nurses use their skills in knowing patients as individuals. However, this aspect of ‘knowing’ cannot be readily translated into the use of a numerical scoring tool. An integrated approach is required to support the care of people with DSD. [ABSTRACT FROM AUTHOR]

Culture Box was a creative project that responded to deprivation and distress experienced by those with dementia in care homes during the COVID-19 pandemic. Remote and digital creative activities were designed and delivered as 'Culture Boxes' to care homes, aiming to alleviate social isolation and loneliness for people with dementia. Eighty-eight people with dementia and 33 care staff from 33 care homes across England were recruited to the study, with 68 people with dementia and 28 staff completing the study 12 months later. Participatory Action Research combining mixed methods was used to evaluate the project. Baseline and follow-up surveys and dialogic interviews at 3 time points during the study collected quantitative and qualitative data and were analysed descriptively and via inductive thematic analysis respectively. Qualitative findings indicated that the project activities facilitated relational care through creative experiences characterised by sharing, building relationships, and developing a sense of community. Social health was promoted via participation in social activities and fostering independence. Future studies should further explore the utility of creative practices to develop relational care, to support care staff, and to maximise wellbeing benefits for those living with dementia., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)

This paper describes the process used by a group of people living with young-onset dementia to inform the development and delivery of a post-diagnosis peer guide. It draws on the four stages of human-centered design and applies them in a new context of supporting resilience for people following a diagnosis of dementia. (1) Discover: The group discussed in-depth their perspectives on what it takes to be resilient while living with dementia and how this can be maintained. (2) Define: The group decided to collate practical information and knowledge based on their personal experiences into a booklet to support the resilience of others following a diagnosis of dementia. (3) Develop: The booklet was designed and developed together with input from other people living with dementia, facilitated by the authors. (4) Deliver: The group guided the professional production of the booklet 'Knowledge is Power'. Over 8000 copies have been distributed to memory clinics, post-diagnostic support organizations and people living with dementia across Wales. A bilingual English-Scottish Gaelic adaptation and an adaptation for people in England have since been developed. The success of 'Knowledge is Power' highlights the importance of working alongside people with dementia to share knowledge and support their resilience.

Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities., Methods: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis., Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia., Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Introduction: The broader determinants of health including a wide range of community assets are extremely important in relation to public health outcomes. Multiple health conditions, multimorbidity, is a growing problem in many populations worldwide. Methods: This paper quantified the effect of community assets on major health conditions for the population of England over six years, at a fine spatial scale using a data analytic approach. Community assets, which included indices of the health system, green space, pollution, poverty, urban environment, safety, and sport and leisure facilities, were quantified in relation to major health conditions. The health conditions examined included high blood pressure, obesity, dementia, diabetes, mental health, cardiovascular conditions, musculoskeletal conditions, respiratory conditions, kidney and liver disease, and cancer. Cluster analysis and dendrograms were calculated for the community assets and major health conditions. For each health condition, a statistical model with all community assets was fitted, and model selection was performed. The number of significant community assets for each health condition was recorded. The unique variance, explained by each significant community asset per health condition, was quantified using hierarchical variance partitioning within an analysis of variance model. Results: The resulting data indicate major health conditions are often clustered, as are community assets. The results suggest that diversity and richness of community assets are key to major health condition outcomes. Primary care service waiting times and distance to public parks were significant predictors of all health conditions examined. Primary care waiting times explained the vast majority of the variances across health conditions, with the exception of obesity, which was better explained by absolute poverty. Conclusions: The implications of the combined findings of the health condition clusters and explanatory power of community assets are discussed. The vast majority of determinants of health could be accounted for by healthcare system performance and distance to public green space, with important covariate socioeconomic factors. Emphases on community approaches, significant relationships, and asset strengths and deficits are needed alongside targeted interventions. Whilst the performance of the public health system remains of key importance, community assets and local infrastructure remain paramount to the broader determinants of health. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic impacted on the provision of care and routine activity of all National Health Service (NHS) services. While General Practitioner referrals to memory services in England have returned to pre-pandemic levels, the estimated dementia diagnosis rate (DDR) fell by 5.4% between March 2020 and February 2023., Methods: In this paper we explore whether this reduction is accurate or is an artefact of the way the NHS collects data., Results: We explore the processes that may have affected national dementia diagnosis rates during and following the COVID-19 pandemic., Conclusions: We discuss what action could be taken to improve the DDR in the future., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background: People with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective ('My opinion: What I think') and proxy-person perspective ('What I think the person I represent thinks'). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy., Methods: Cross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo's ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis., Results: We analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only., Conclusions: This was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA., (© 2023. The Author(s).)

Over recent decades, the arts have become a popular response to dementia. Amidst wider concerns with accessibility, widening participation and audience diversity, coupled with greater attention to creativity across dementia studies, many arts organisations are now offering dementia friendly initiatives. While dementia friendliness has been well-established for almost a decade, the meaning of friendliness remains vague. This paper reports results from a study of how stakeholders navigate this nebulousness when developing their own dementia friendly cultural events. To assess this, we interviewed stakeholders working for arts organisations in the northwest of England. We found that participants built up local informal networks of knowledge exchange, sharing experiences between stakeholders. The dementia friendliness that characterises this network centres on the crafting of vibes that enable people with dementia to 'unhide' themselves. Through this accommodating approach, dementia friendliness converges with stakeholder interests, becoming something of an art form in its own right, typified by active embodied experience, flexible and creative self-expression, and being in-the-moment.

This paper considers the potential for the Mental Capacity Act (MCA) of England and Wales to incentivise the exclusion of people with dementia from research. The MCA is intended to standardise and safeguard the inclusion of people with cognitive impairments in research. This entails various procedural requirements, which in pressurised research contexts can lead researchers to exclude people with dementia as a means of simplifying bureaucratic constraints. I consider the risks of an 'unethical ethics', wherein procedural ethics indirectly causes the exclusion of people with dementia from research, undermining historic successes toward increased inclusivity. I suggest several solutions, including enhanced sensitivity to impairments and shifting the burden of proof from justifying inclusion to justifying exclusion. The paper responds to the 'ethics creep' tradition in procedural ethics, and critical appraisals of capacity legislation in dementia research. This approach recognises that institutional research ethics is itself a major ethical concern and can unwittingly beget unethical practices. Dementia researchers must be alert to such unethical ethics. [ABSTRACT FROM AUTHOR]

This paper interrogates the legitimacy of formal ethical regulation regarding people with dementia under the Mental Capacity Act, 2005 in England and Wales. Under the Act, research among people diagnosed with dementia must be approved by Health Research Authority committees, irrespective of whether that research engages with health organisations or service users. As examples, I discuss two ethnographic dementia studies that do not engage with healthcare services, but which nonetheless require HRA approval. These instances raise questions regarding legitimacy and reciprocity in the governance of dementia. Through capacity legislation, the state exerts control over people with dementia, automatically delineating them as healthcare subjects because of their diagnoses. This diagnosis functions as a form of administrative medicalisation, rendering dementia a medical entity and those diagnosed with it the property of formal healthcare. However, many people with dementia in England and Wales do not receive related health or care services beyond diagnosis. This institutional imbalance of high governance and low support undermines the contractual citizenship of people with dementia, wherein state-citizen rights and responsibilities should be reciprocal. In response, I consider resistance to this system in ethnographic research. "Resistance" here is not necessarily deliberate, hostile, difficult or perceived, but rather encompasses micropolitical effects that are contrary to power or control, sometimes emerging from systems themselves rather than individual resistive actors. Resistance can be unintentional, through mundane failures to satisfy specific aspects of governance bureaucracies. It can also be deliberate, through refusals to comply with restrictions that seem cumbersome, inapplicable or unethical, potentially raising questions of malpractice and misconduct. I suggest that resistance is made more probable due to the expansion of governance bureaucracies. On the one hand, the potential for both unintentional and intentional transgression increases, while on the other hand, the capacity for those transgressions to be discovered and rectified decreases, because the maintenance of control over such a system requires vast resources. Behind this ethico-bureaucratic tumult, people with dementia themselves are largely invisible. People with dementia often have no interaction with committees that determine their research participation. This further renders ethical governance a particularly disenfranchising facet of the dementia research economy. The state stipulates that people with dementia must be treated differently because of their diagnoses, without consulting those people. In response, resistance to unethical governance could be intuitively deemed ethical per se, but I suggest that such a simplistic binary is somewhat misleading., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Objectives: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England., Methods: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs., Results: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs., Conclusions: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice.

The rising prevalence of dementia in the UK presents a public health and economic challenge. People over the age of 60 are the fastest growing age group in prison and the number of people in prison who experience dementia is rising. There is a lack of research focused on improving management and support for people in prison who may experience dementia, but growing awareness of the need for staff training in prisons to identify and support people showing symptoms of dementia. This paper reports the development of a theory and evidence-based training package for prison staff and peer carers to identify and support people in prison with mild cognitive impairment or dementia. Training content and format was informed by the literature on dementia training in prisons and analysis of qualitative and quantitative data from semi-structured interviews with prison staff and a survey administered to prison governors and healthcare managers, both of which explored current provision of dementia training and training needs. A stakeholder working group reviewed and revised the training during two interactive meetings. Future research to evaluate the effectiveness of the training in practice is required. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to describe a literature review and online survey to explore the provisions and support for people living with dementia in housing with care (HwC) settings within England. Design/methodology/approach: An initial scoping literature review was conducted to synthesise the evidence relating to residents living with dementia in HwC settings and informed the development of an online survey distributed to HwC housing managers to explore the provisions, policies, procedures and support services relating to people living with dementia in HwC settings. Findings: The findings provided a picture of HwC settings in England and the residents, particularly those living with dementia, in terms of policies and procedures, reasons for moving into HwC, reasons for denying entry, reasons for leaving, positive outcomes, staff knowledge and training, environmental design, challenges and successes. Research limitations/implications: The survey responses were from a self-selected sample of HwC providers and scheme/village managers; thus, it may be the case that the settings involved were doing more to support residents living with dementia. It should also be appreciated that the responses were based on the perceptions of the individual staff members completing the survey, not those of the HwC residents. Originality/value: This study presented a picture of the current state of provisions and support for people with dementia within HwC settings in England, providing an essential platform from which to undertake targeted research to help shape future provision and enabling housing providers to assess their current schemes within the wider context. [ABSTRACT FROM AUTHOR]

Background: There is uncertainty around the health impact and economic costs of the recent slowing of the historical decline in cardiovascular disease (CVD) incidence and the future impact on dementia and disability., Methods: Previously validated IMPACT Better Ageing Markov model for England and Wales, integrating English Longitudinal Study of Ageing (ELSA) data for 17,906 ELSA participants followed from 1998 to 2012, linked to NHS Hospital Episode Statistics. Counterfactual design comparing two scenarios: Scenario 1. CVD Plateau-age-specific CVD incidence remains at 2011 levels, thus continuing recent trends. Scenario 2. CVD Fall-age-specific CVD incidence goes on declining, following longer-term trends. The main outcome measures were age-related healthcare costs, social care costs, opportunity costs of informal care, and quality adjusted life years (valued at £60,000 per QALY)., Findings: The total 10 year cumulative incremental net monetary cost associated with a persistent plateauing of CVD would be approximately £54 billion (95% uncertainty interval £14.3-£96.2 billion), made up of some £13 billion (£8.8-£16.7 billion) healthcare costs, £1.5 billion (-£0.9-£4.0 billion) social care costs, £8 billion (£3.4-£12.8 billion) informal care and £32 billion (£0.3-£67.6 billion) value of lost QALYs., Interpretation: After previous, dramatic falls, CVD incidence has recently plateaued. That slowdown could substantially increase health and social care costs over the next ten years. Healthcare costs are likely to increase more than social care costs in absolute terms, but social care costs will increase more in relative terms. Given the links between COVID-19 and cardiovascular health, effective cardiovascular prevention policies need to be revitalised urgently., Competing Interests: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years. Dr Collins is currently on secondment as Head of Health Economics in Welsh Government; this paper does not represent any views of Welsh Government. Dr Pearson-Stuttard is also Head of Health Analytics at a commercial company, Lane Clark & Peacock LLP, vice-chair of the Royal Society for Public Health and reports personal fees from Novo Nordisk A/S, all outside of the submitted work. This work was completed as part of Dr Pearson-Stuttard’s academic appointment at Imperial College London.

Background: Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement., Methods: This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters., Findings: All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and 'ad hoc' conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs., Conclusion: The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

Purpose: This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach: Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings: All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value: To the best of the authors' knowledge, this is the first paper to compare dementia assessment provision between different services in England. [ABSTRACT FROM AUTHOR]

Background: Social care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. Methods and analysis: In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. Discussion: This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. Trial registration: Study registration number:ISRCTN10653250. [ABSTRACT FROM AUTHOR]

This paper reports on a study which examined the notions of authenticity and citizenship for people living with cognitive impairment or dementia in a care home in the North-East of England. We demonstrated that both notions were present and were encouraged by engagement with an artist, where this involved audio and visual recordings and the creation of a film. The artist's interactions were observed by a non-participant observer using ethnographic techniques, including interviews with the residents, their families and the staff of the care home. The data were analysed using grounded theory and the constant comparative method of qualitative analysis. Our findings suggest that participatory art might help to maintain and encourage authenticity and citizenship in people living with dementia in a care home. Certainly, authenticity and citizenship are notions worth pursuing in the context of dementia generally, but especially in care homes. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations., (© 2021 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Research has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the 'active mechanisms' whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage with traditional health and social care initiatives. This paper reports on a study that drew from the principles of Participatory Action Research to explore the 'active mechanisms' of a technological initiative for older men (65+ years) with dementia in rural England. An individually tailored, male-only initiative, using off-the-shelf computer game technology (e.g. iPad, Nintendo Wii and Microsoft Kinect) was delivered over a nine-week period. Multiple qualitative methods were employed, including: focus groups, open interviews and extensive reflective field notes, to gather data from the perspective of 22 men, 15 care partners and five community volunteers. The data were analysed thematically and interpreted using a masculinity lens. Three mechanisms contributed to the initiative's success: the use of the technology, the male-only environment and the empowering approach adopted. The paper argues that initiatives aimed at community-dwelling older men with dementia would be advised to consider these gendered experiences and ensure participants can maximise their masculine capital when participating in them, by providing enabling activities, non-threatening environments and empowering approaches of delivery. [ABSTRACT FROM AUTHOR]

Purpose - The purpose of this paper is to discuss the different meanings of integration as expressed in dementia care practice and service organisation in England. Dementia is frequently complicated by concurrent illnesses or long-term conditions at the end of life. Design/methodology/approach - This is a policy discussion. Findings - The paper describes three forms of integration: linkage, co-ordination of care, and full integration. Each form or level is related to dementia as a progressive neurological disorder with multiple symptoms, which also overlaps with other long-term conditions, making each individual's dementia unique. Linkage means being able to identify appropriate resources to meet the needs of the individual and their family. Co-ordination usually means multi-disciplinary working at least with general practice and often wider practitioner input. Full integration is best expressed by the work of care homes, which co-ordinate care and often draws on diverse funding streams. Practical implications - Greater specificity of the meaning of integration may be helpful to policy makers and practitioners. The care and treatment of people with dementia may be optimised if practitioners think about work styles and engagement with other sectors, agencies and professionals rather than pursuing all-encompassing organisational integration. Care homes may have much to teach other practice settings about full integration. Originality/value - Integration is often seen uncritically as the solution to all problems; this paper explores the varieties of integration and explores their implications for practitioners and policy makers supporting people with dementia and their carers. [ABSTRACT FROM AUTHOR]

The effects of coronavirus disease 2019 (COVID-19) have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer-term effects such as neurological damage. The International Dementia Alliance is a group of dementia specialists from six European countries and this paper is a summary of our experience of the effects of COVID-19 on our populations. Experience from England, France, Germany, the Netherlands, Spain and Switzerland highlight the differential response from health and social care systems and the measures taken to maximise support for older people and those with dementia. The common themes include recognition of the atypical presentation of COVID-19 in older people (and those with dementia) need to pay particular attention to the care of people with dementia in care homes; the recognition of the toll that isolation can bring on older people and the complexity of the response by health and social services to minimise the negative impact of the pandemic. Potential new ways of working identified during the pandemic could serve as a positive legacy from the crisis., (© 2021 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Purpose The STOMP programme – stopping the over-medication of people with an intellectual disability, autism or both is a three-year programme supported by NHS England. Concern about the overuse of antipsychotic drugs has been a constant theme since the 1970s. However, despite a multitude of guidelines the practice continues. The report into the events at Winterbourne View not only raised concerns about the overuse of antipsychotic drugs but of antidepressants. Part 1 presented the historical background to the use of psychotropic drugs for people with an intellectual disability, autism or both. The purpose of this paper (Part 2) is to present the approach adopted to reduce over-medication (the "Call to Action") and the progress so far at the half way stage.Design/methodology/approach The "Call to Action" methodology is described in a Manchester University report – mobilising and organising for large-scale change in healthcare "The Right Prescription: A Call to Action on the use of antipsychotic drugs for people with dementia". Their research suggested that a social mobilising and organising approach to change operates could provide a mechanism for bringing about change where other approaches had failed.Findings The adoption of the "Call to Action" methodology has resulted in widespread acknowledgement across intellectual disability practice that overuse of psychotropic medication and poor review was resulting in over-medication. Many individual local programmes are underway (some are described in this paper) however to what extent the overall use of psychotropic drugs has changed is yet to be evaluated.Originality/value STOMP is part of an English national agenda – transforming care. The government and leading organisations across the health and care system are committed to transforming care for people with intellectual disabilities autism or both who have a mental illness or whose behaviour challenges services. This paper describes a new approach to stopping the over-medication of people with an intellectual disability, autism or both. [ABSTRACT FROM AUTHOR]

Current international dementia care policies focus on creating 'dementia-friendly' communities that aim to support the social inclusion of people with dementia. Although it is known that the geo-socio-cultural rural environment can impact on the experiences of people living with dementia, this can be overlooked when exploring and implementing social inclusion policies. This paper addresses an important gap in the literature by exploring the perceptions of daily life for older men (65+ years) living with dementia in three rural areas of England. Open interviews were conducted with 17 rural-dwelling older men with dementia and the data elicited were analysed thematically to construct two higher order themes. The first focussed on ' Cracking on with life in a rural idyll ' and highlighted the benefits of rural living including the pleasant, natural environment, supportive informal networks and some accessible formal dementia support. The second presented ' A challenge to the idyll ' and outlined difficulties the men faced including a lack of dementia awareness amongst their family and the wider rural community as well as the physical and internal motivational barriers associated with the rural landscape and their dementia. The findings were interpreted through a lens of social inclusion and demonstrated how the geo-socio-cultural rural environment both enabled and inhibited facets of the men's experiences of life in their communities. Based on these findings, the paper offers recommendations for practitioners, researchers and policy makers wishing to promote social inclusion in rural-dwelling older men living with dementia.

Accessible summary We wanted to know what people with learning disabilities know about dementia. We asked service users what the word meant to them, if they knew anyone with dementia, and what it was like to share a house with someone who has dementia. We learnt that: • Service users can know a lot about dementia. • Living with someone with dementia can be really hard – and staff do not always have enough time for everyone else. • Services should think more about how dementia affects everyone – not just the person who has the dementia. This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore the environmental health role in meeting the housing condition, adaptation and associated needs of older people living in private sector housing in London, including those living with and at risk of dementia. Design/methodology/approach: A multi-method approach was adopted. First, relevant public-facing websites in London were scrutinised. Second, a Qualtrics online survey was designed and circulated to capture relevant information around relevant services offered. Third, seven face-to-face interviews were conducted with front-line practitioners involved in providing housing services to private sector owners and tenants. These were transcribed verbatim and analysed using NVivo software before categorising into themes arising. Findings: An erratic picture emerged around the meaning of "older people" and the services offered. A mixture of organisational arrangements and types of assistance available was reported, with different ways of access and referral to services, with a range of discretionary grants offered including for dementia. Some local authorities offered minimal specialist services, with others providing highly integrated and client-led, flexible interventions to meet a range of needs. Limited inclusion of research, evidence and evaluation of the effectiveness of interventions was reported overall, although client feedback was noted as good where services were provided. Originality/value: There is very little published around environmental health work in supporting older people living in London and their housing, health and social care needs. This paper captures a snapshot of current and proposed services offered across London for owner-occupiers and private sector tenants, as a basis for further research for evidence-based, effective front-line services going forward. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to explore the impact of hospital discharge on the wider wellbeing of older people, drawing out implications this can have on mental health.Design/methodology/approach This paper is based on research from the Healthwatch England Special Inquiry into hospital discharge. The paper focuses on the experiences of 1,300 older people, with the majority of the research being undertaken by the local Healthwatch network. The 58 local Healthwatch who submitted evidence on the experiences of older people as part of the inquiry were autonomous in how they were able to carry out the research, with results being analysed through use of a qualitative framework.Findings Older people often felt they were not ready for discharge due to not feeling involved in planning of their discharge, being discharged without the information they need and having difficulties accessing aftercare support. This paper examines the impact these issues can have on the mental health and wellbeing of older people, their carers and specifically patients with dementia both during and after discharge from hospital. Through examination of these issues the discharge process can be viewed from the perspective of the individual, and start to conceptualise where the hospital discharge process could further support older people’s mental health and wellbeing.Research limitations/implications This paper examines these issues in detail through case studies collected regarding older people, and exposes the impact poor discharge can have on physical and mental wellbeing for older patients. The paper presents a number of issues which have implications for policy and practice in both health and social care, and the integration of the two services.Originality/value This is the first Special Inquiry conducted by Healthwatch England in conjunction with the local Healthwatch network and presents a large scale piece of research led by the experiences of older people. [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]

Rationale, Aims, and Objectives: There is a general lack of awareness and understanding of dementia within ethnic minority groups in the United Kingdom. There is also a dearth of research involving ethnic minority caregivers about reducing barriers to accessing services and optimizing engagements with religiously tailored interventions. This paper reports findings from a qualitative study that examined the barriers to health care service use in the Bangladeshi community living in the United Kingdom., Methods: The research draws on findings from a doctoral level research study on understanding dementia among the Bangladeshi community in England. The data for the doctoral research were gathered in two ways: (a) focus group discussions and (b) semi-structured interviews. All data were audio-recorded and analysed using thematic analysis. NVivo software was used to aid transcribing, coding, and interpretation of emergent themes., Results: The data showed that there were some barriers experienced by participants due to their religious and cultural beliefs and practices with other barriers related to the complexity of the UK health care system. Gender-based caregiving also appeared to interfere with religious ideologies while religiously appropriate health care services were deemed of great importance for successfully accessing those services., Conclusions: The findings provide an understanding of the experiences of the Bangladeshi community when seeking to access mainstream UK health care services and may help to provide useful directions for future research., (© 2020 John Wiley & Sons, Ltd.)

Dementia is an increasing problem in today's ageing society, and meeting future demand for care is a major concern for policy-makers and planners. This paper presents a novel hybrid simulation model that simultaneously takes population-level and patient-level perspectives to calculate the numbers of patients at different stages of disease severity over time, and their associated care costs. System Dynamics is used at population level to capture ageing, dementia onset, and all-cause mortality, whereas disease progression is modelled at individual patient level using Agent-Based methods. This enables the model to account for variability between patients in the rate of cognitive decline, dementia-related mortality and response to treatment interventions. Using epidemiological data from the medical literature, disease progression is modelled via a longitudinal clustering method to identify progression type, followed by mixed-effects regression to reflect each individual's rate of cognitive decline. Results are presented for population data from the south of England, and show that the currently available interventions have only modest effects at population level. [ABSTRACT FROM AUTHOR]

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the 'client'. Rather than focusing on the HCWs' work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered 'character' and 'innate' caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs. [ABSTRACT FROM AUTHOR]

Post graduate education in dementia care is delivered by a number of academic institutions worldwide. Aimed primarily at people in advanced and specialised roles in health and social care, it is designed to develop the knowledge and skills to advance practice and lead to positive changes and benefits to people living with dementia and their social networks. However, undertaking Master's level education can be challenging, particularly when this is undertaken alongside full-time work and family/domestic commitments. To illuminate this student experience further, this paper takes a case study approach to explore the experiences of three students who have successfully completed a Master's programme in dementia care in the North West of England. Their individual and collective experiences highlight the challenges of juggling competing demands and the dynamic processes of navigating the student journey and continually negotiating supports in order to successfully complete the course. The study highlights important implications for the design and supportive structures within post graduate Master's education in dementia care/studies, and potentially in other subject areas also, in order to support students' transition to post graduate study.

Background and Objectives: Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program "Dementia and Imagination" on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care., Research Design and Methods: One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers' attitudes and perceptions of the impact of the arts program were collected through interviews at three time points., Results: Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities, (2) Social connectedness, (3) Improvements to well-being, and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program, and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers' attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points., Discussion and Implications: Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America.)

With over two-thirds of people with dementia living in the community and one-third of those living alone, it is important to consider the future housing needs of this population, particularly as symptoms of cognitive impairment increase. Policy in England has focused on enabling people living with dementia to remain in their own homes for as long as possible, often with the support of a family carer. However, many people struggle to maintain an acceptable quality of life in their own homes as their dementia advances, often due to the design limitations of mainstream housing and the challenge of finding specialist domiciliary care that is affordable and of sufficient quality. Extra care housing offers a model that aims to support older people living in their own apartments, whilst also offering specialist person-centred care as and when it is needed. This paper reports on a longitudinal project that explored how extra care housing can respond to the changing social care needs of residents, including those living with dementia. Participants included residents and staff from four extra care housing schemes, one of which was a specialist dementia scheme, in two regions of England. Interviews were carried with 51 residents across 4 rounds at 5 month intervals between October 2015 and June 2017. Interviews were also carried out with 7 managers, 20 care staff and 2 local authority commissioners of housing for older people. Key factors included person-centred care and support, flexible commissioning and staffing, appropriate design of the environment and suitable location of the scheme within the wider community. The challenge of delivering services that addresses these issues during a period of reduced public spending is acknowledged. Further research is suggested to compare different approaches to supporting people with dementia, including integrated and separated accommodation, and different stages of dementia.

Background: People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision., Objectives: To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes., Design: The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible., Setting: Nursing homes in England providing care for people with dementia., Participants: Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff., Intervention: Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement., Main Outcome Measures: The two contender primary outcome measures were Comfort Assessment in Dying - End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data - health economic outcomes, medication/service use and intervention activity., Results: Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia ( n  = 32) were recruited in intervention ( n  = 18) and control ( n  = 14) homes. Informal carers (total, n  = 12: intervention, n  = 5; control, n  = 7) and 97 staff from eight sites (intervention, n  = 75; control, n  = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported., Conclusions: A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification., Future Work: In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context., Trial Registration: Current Controlled Trials ISRCTN14948133., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 24, No. 6. See the NIHR Journals Library website for further project information., Competing Interests: Joanna Coast reports grants from the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme during the conduct of the study; and she led the development of the ICECAP (ICEpop CAPability) instruments. Claire Goodman is a NIHR Senior Investigator. Ben Hardwick reports grants from the NIHR HTA programme during the conduct of the study. Catherine Walshe reports that she was a member of the NIHR Health Services and Delivery Research programme Researcher Led Committee during the conduct of the study.

In an era of global environmental deterioration and income inequity, public health faces many challenges, including the growing number of individuals, especially older people, with chronic diseases. Dementia is increasingly being seen not just as a biomedical problem to solve but as a public and community challenge to address more broadly. Concepts like prevention, brain health, and quality of life/well-being are receiving more attention. The engagement of community in addressing these challenges is being seen as critical to successful social adaptation. Arts programs are reinvigorating cultural responses to the growing number of older people with cognitive challenges. The humanities offer ways of understanding the power of words and stories in public discourse and a critical lens though which to view political and economic influences. In this paper, we report on a panel held in London on the occasion of the conference at the Royal Society for Public Health in March, 2017, in which the authors presented. Key issues discussed included problem framing, the nature of evidence, the politics of power and influence, and the development of effective interventions. In this paper, we review the rejection of two policies, one on dementia and one on the arts and humanities in public health, by the American Public Health Association; the emergence of policies in the UK; and some of the state of the art practices, particularly in training, again focusing on the UK. [ABSTRACT FROM AUTHOR]

Abstract: Continence is a key moment of care that can tell us about the wider care of people living with dementia within acute hospital wards. The spotlight is currently on the quality of hospital care of older people across the UK, yet concerns persist about their poor treatment, neglect, abuse, and discrimination within this setting. Thus, within hospitals, the care of people living with dementia is both a welfare issue and a human rights issue. The challenge of continence care for people living with dementia can be seen as the ‘canary in the coal mine’ for the unravelling of dignity within the acute setting. This paper draws on an ethnographic study within five hospitals in England and Wales, selected to represent a range of hospital types, geographies and socio‐economic catchments. Observational fieldwork was carried out over 154 days in acute hospitals known to admit large numbers of people living with dementia. This paper starts to fill the gap between theory and data by providing an in‐depth ethnographic analysis examining the ways in which treatment as a person is negotiated, achieved or threatened. We examine how the twin assaults on agency of a diagnosis of dementia and of incontinence threaten personhood. The acute threats to this patient group may then act to magnify perils to treatment as a person. Our findings suggest that personal dignity and the social construction of moral personhood are both threatened and maintained in such a setting. We show how empirical ethnographic data can lend weight to, and add detail to, theoretical accounts of moral personhood and dignity. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to consider the issue of types of assessment offered by services for people with learning disabilities from the research study "A Comparison of Dementia Assessment Services for People with Intellectual Disabilities". Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Assessment for possible dementia is a complex activity. The gold standard is to ensure that the assessment process is comprehensive including both direct assessments with the person and gathering information from key informants. The issues in not adopting this methodology are considered, as are issues in what services and assessments are called. Originality/value: The commentary considers the studies presented from a practitioner perspective. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this paper is to discuss whether the use of outcome-focused homecare improves the subjective well-being of the familial carers of older people with dementia. It also discusses familial carers’ perception of whether this intervention has improved the well-being of their relative. Design/methodology/approach – This qualitative study followed the familial carers of 20 service users suffering from dementia over a six-month period. Semi-structured interviews were undertaken at three intervals during the six months. The carers were asked to assess their subjective well-being at the start, middle and end of the study. Findings – The key findings were that all 20 familial carers expressed an improvement in their subjective well-being and that of their older family member, who appeared more settled as a result of this model of care. Practical implications – The need to consider the use of outcome-focused care as an intervention strategy for older people living alone in the community. The need to provide supportive environments for the carers of older people with dementia to limit their sense of isolation. The prioritising of outcome-focused care in the most complex and chaotic cases. Originality/value – This study provides an insight into the effectiveness of outcome-focused homecare with older people experiencing dementia as perceived by their familial carers. Previously, research has established that outcome-focused care increased the subjective well-being of non-dementia sufferers. This study dovetails neatly with this in demonstrating the same effect on dementia sufferers as perceived by their familial carers. Additionally, this study also demonstrated that this model of outcome-focused care also improved the subjective well-being of the familial carers themselves. These finding will help practitioners consider the use of this model of homecare as a potential alternative or a delaying strategy to residential care. [ABSTRACT FROM AUTHOR]

Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the 'cognitive load' required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction. [ABSTRACT FROM AUTHOR]