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

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

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

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

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

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

Registered care home managers' experiences of responding to the national care home visiting guidance in England during the Covid-19 pandemic; a multi-method qualitative study.

BACKGROUND: Visiting restrictions in care homes in England and many comparable countries during the Covid-19 pandemic were extensive and prolonged. We examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies. METHODS: A diverse sample of 121 care home managers across England, recruited through varied sources including the NIHR ENRICH network of care homes, completed a 10-item qualitative survey. Follow-up, in-depth qualitative interviews were conducted with a purposive sub-sample of 40 managers. Data were analysed thematically using Framework, a theoretically and methodologically flexible tool for data analysis in multiple researcher teams. FINDINGS: Some viewed the national guidance positively; as supporting the restrictive measures they felt necessary to protect residents and staff from infection, or as setting a broad policy framework while allowing local discretion. More commonly, however, managers experienced challenges. These included the guidance being issued late; the initial document and frequent, media-led updates not being user-friendly; important gaps, particularly in relation to dementia and the risks and harms associated with restrictions; guidance being unhelpfully open to interpretation while restrictive interpretations by regulators limited apparent scope for discretion; fragmented systems of local governance and poor central-local coordination; inconsistent access and quality of support from local regulators wider sources of information, advice and support that, while often valued, were experienced as uncoordinated, duplicative and sometimes confusing; and insufficient account taken of workforce challenges. CONCLUSIONS: Underlying many of the challenges experienced were structural issues, for which there have been longstanding calls for investment and strategic reform. For increasing sector resilience, these should be are urgently addressed. Future guidance would also be significantly strengthened by gathering better data, supporting well-facilitated peer exchange, engaging the sector more fully and dynamically in policy-making and learning from care home managers' and staff's experiences, particularly of assessing, managing and mitigating the wider risks and harms associated with visiting restrictions.

Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.

BACKGROUND: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. METHODS: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. FINDINGS: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. CONCLUSION: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

Predictors of loneliness during the Covid-19 pandemic in people with dementia and their carers in England: findings from the DETERMIND-C19 study.

OBJECTIVES: To identify factors that predict the risk of loneliness for people with dementia and carers during a pandemic. METHODS: People with dementia and their carers completed assessments before (July 2019-March 2020; 206 dyads) and after (July-October 2020) the first Covid-19 'lockdown' in England. At follow-up, the analytic sample comprised 67 people with dementia and 108 carers. We built a longitudinal path model with loneliness as an observed outcome. Carer type and social contacts at both measurements were considered. Other social resources (quality of relationship, formal day activities), wellbeing (anxiety, psychological wellbeing) and cognitive impairment were measured with initial level and change using latent growth curves. We adjusted for socio-demographic factors and health at baseline. RESULTS: In carers, higher levels of loneliness were directly associated with non-spouse coresident carer type, level and increase of anxiety in carer, more formal day activities, and higher cognitive impairment in the person with dementia. In people with dementia, non-spouse coresident carer type, and higher initial levels of social resources, wellbeing, and cognitive impairment predicted the changes in these factors; this produced indirect effects on social contacts and loneliness. CONCLUSION: Loneliness in the Covid-19 pandemic appears to be shaped by different mechanisms for people with dementia and their carers. The results suggest that carers of those with dementia may prioritize providing care that protects the person with dementia from loneliness at the cost of experiencing loneliness themselves. Directions for the promotion of adaptive social care during the Covid-19 pandemic and beyond are discussed.

Receipt of help by people with cognitive impairment: results from the English Longitudinal Study of Ageing.

OBJECTIVES: We investigated whether people with dementia or low memory/orientation reported more help misaligned with needs - more unmet need and/or more unrequired help - than other people with similar levels of functional limitation, and examined associations with quality of life. METHODS: From pooled English Longitudinal Study of Ageing data from waves 6, 7, and 8, we identified community-dwelling people aged 50+ with: dementia (n= 405); low memory/orientation but no dementia (n= 4520); and intact memory/orientation (n= 10,264). Unmet need (not receiving help for the functional limitation) and unrequired help (receipt of help without the respective functional limitation) were used as outcomes in two-part regressions. Quality of life (CASP-19) was used as a continuous outcome in a linear regression. Functional limitation and its interaction with cognitive status and socio-demographic factors were included in the models. RESULTS: Those with dementia or low memory/orientation but few functional limitations reported more unmet needs and unrequired help than their counterparts with intact memory/orientation. At high levels of limitations, the needs of those with dementia or lower memory/orientation were met more often and the receipt of unrequired help was similar compared to those with intact memory/orientation. Unmet need and unrequired help were associated with poorer quality of life. CONCLUSIONS: Unmet need and unrequired help were particular challenges for those with poorer cognition and potentially at early stages of dementia; they were associated with lower quality of life. Our results highlight the importance of good-quality timely diagnosis, identification of needs, and person-centred assessment to help improve quality of life.

'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.

BACKGROUND AND OBJECTIVES: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. RESEARCH DESIGN AND METHODS: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. FINDINGS: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. CONCLUSIONS: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

The sociocultural framing of public attitudes to sharing the costs of social care for older people in England.

Twelve synchronous online focus groups were conducted, each involving four to six members of the general public who had expressed in-principle support for sharing the costs of social care for older people between service users and government. These explored participants' reasons for preferring a shared approach and their views on how costs should be shared, with particular attention given to the sociocultural frames employed. Four main sociocultural frames were identified, reflecting dominant discourses concerning (i) the financial burden of meeting social care need ('scarcity' frame) (ii) the core purpose of social care ('medicalised conception of care' frame) (iii) the role and perceived limitations of the private market ('consumer' frame), and (iv) fundamental concerns about safety, security and belonging ('loss and abandonment' frame). Of these four frames, the 'scarcity' frame was dominant, with views about how costs should be shared overwhelmingly formulated upon assumptions of insufficient resources. This was reflected in concerns about affordability and the consequent need for the financial burden to be shared between individuals and government, and resulted in a residual vision for care and anxieties about care quality, cliff-edge costs and abandonment. The concept of shared funding was also employed rhetorically to suggest an equitable approach to managing financial burden, reflected in phrases such as 'splitting the difference'. Whilst out-of-pocket payments were sometimes seen as useful or necessary in the context of scarce public resources, the idea of shared funding was sometimes interpreted more flexibly to include individual contributions made in a range of ways, including tax, social insurance payments and wider social and economic contributions to society. Despite the dominance of the 'scarcity' frame, participants favoured greater government contribution than currently. These four frames and their associated discourses provide insight into how the public 'hear' and make sense of the debate about social care funding and, specifically, how apparent support for shared public-private funding is structured. Government and those hoping to influence the future of social care funding need to promote a vision of funding reform and win support for it by actively engaging with the sociocultural frames that the public recognise and engage with, with all of their apparent inconsistencies and contradictions.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

Exploring the cost-effectiveness of advance care planning (by taking a family carer perspective): Findings of an economic modelling study.

Advance care planning is considered an important part of high-quality end-of-life care. Its cost-effectiveness is currently unknown. In this study, we explore the cost-effectiveness of a strategy, in which advance care planning is offered systematically to older people at the end-of-life compared with standard care. We conducted decision-analytic modelling. The perspective was health and social care and the time horizon was 1 year. Outcomes included were quality-adjusted life years as they referred to the surviving carers. Data sources included published studies, national statistics and expert views. Average total cost in the advance care planning versus standard care group was £3,739 versus £3,069. The quality-adjusted life year gain to carers was 0.03 for the intervention in comparison with the standard care group. Based on carer's health-related quality-of-life, the average cost per quality-adjusted life year was £18,965. The probability that the intervention was cost-effective was 55% (70%) at a cost per quality-adjusted life year threshold of £20,000 (£30,000). Conducting cost-effectiveness analysis for advance care planning is challenging due to uncertainties in practice and research, such as a lack of agreement on how advance care planning should be provided and by whom (which influences its costs), and about relevant beneficiary groups (which influences its outcomes). However, even when assuming relatively high costs for the delivery of advance care planning and only one beneficiary group, namely, family carers, our analysis showed that advance care planning was probably cost-effective.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

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

Funding and planning for social care in later life: a deliberative focus group study.

This study examined people's perceptions and behaviours in relation to planning for their social care needs, and their values and priorities concerning how social care should be funded. Eight deliberative focus groups were conducted in May 2018 with 53 participants, aged 25-82 years, in London, Manchester and rural locations near York and Sheffield. Multiple uncertainties created barriers to planning for social care needs including not knowing how much to save, not thinking it possible for an average person to save enough to meet significant needs, reluctance to plan for something potentially unnecessary, lack of suitable and secure ways of saving, and a perception of social care policy as unsettled. Participants also had significant concerns that they would not be able to obtain good-quality care, regardless of resources. In addition, it was commonly thought unrealistic to expect families to provide more than low-intensity, supplementary care, while use of housing assets to pay for care was considered unfair, both for home-owners who could lose their assets and non-home-owners who were left reliant on the state although it was more acceptable where people were childless or had substantial assets. Participants thought any new arrangements should be inclusive, personally affordable, sustainable, transparent, good-quality and honest. They preferred to contribute regularly rather than find considerable sums of money at times of crisis, and preferred to risk-pool, with everyone obliged or heavily encouraged to contribute. Transparency was valued so those better at 'working the system' were not able to benefit unfairly  and participants wanted to know that, if they contributed, they would be assured of good-quality care. Trust in Government and other institutions, however, was low. New funding arrangements should incorporate measures to increase transparency and trust, be clear about the responsibilities of individuals and the state, provide meaningful options to save, and place significant focus on improving actual and perceived care quality. For acceptability, proposals should be framed to emphasise their affective dimensions and positive values.

Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People.

OBJECTIVES: To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management. METHODS: We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models. RESULTS: Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving 'outstanding' or 'excellent' care, and of having pain relieved 'completely, all the time' while being cared for at home. CONCLUSIONS: Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships.

Whose job? The staffing of advance care planning support in twelve international healthcare organizations: a qualitative interview study.

BACKGROUND: ACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking. METHODS: We identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software. RESULTS: Organizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource. CONCLUSIONS: Effective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life.

The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion.

CONTEXT: End-of-life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value, and undertreatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end-of-life outcomes for people with dementia and their carers. OBJECTIVE: To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end-of-life outcomes for people with dementia and their carers. METHODS: Systematic searches of academic databases (CINAHL Plus with full text, PsycINFO, SocINDEX with full text, and PubMed) were conducted to identify research studies, published between January 2000-January 2017 and involving statistical methods, in which ACP is an intervention or independent variable, and in which end-of-life outcomes for people with dementia and/or their carers are reported. RESULTS: A total of 18 relevant studies were identified. Most found ACP to be associated with some improved end-of-life outcomes. Studies were predominantly, but not exclusively, from the U.S. and care home-based. Type of ACP and outcome measures varied. Quality was assessed using National Institute of Health and Care Excellence quality appraisal checklists. Over half of the studies were of moderate to high quality. Three were randomized controlled trials, two of which were low quality. CONCLUSION: There is a need for more high-quality outcome studies, particularly using randomized designs to control for confounding. These need to be underpinned by sufficient development work and process evaluation to clarify the appropriateness of outcome measures, explore implementation issues and identify "active elements."

The economic evidence for advance care planning: Systematic review of evidence.

BACKGROUND: Advance care planning is a process of discussion and review concerning future care in the event of losing capacity. Aimed at improving the appropriateness and quality of care, it is also often considered a means of making better use of healthcare resources at the end of life. AIM: To review and summarise economic evidence on advance care planning. DESIGN: A systematic review of the academic literature. DATA SOURCES: We searched for English language, peer-reviewed journal articles, 1990-2014, using relevant research databases: PubMed, ProQuest, CINAHL Plus with Full Text; EconLit, PsycINFO, SocINDEX with Full Text and International Bibliography of the Social Sciences. Empirical studies using statistical methods in which advance care planning and costs are variables were included. RESULTS: There are no published cost-effectiveness studies. Included studies focus on healthcare savings, usually associated with reduced demand for hospital care. Advance care planning appears to be associated with healthcare savings for some people in some circumstances, such as people living with dementia in the community, people in nursing homes or in areas with high end-of-life care spending. There is no evidence that advance care planning is likely to be more expensive. CONCLUSION: There is need for clearer articulation of the likely mechanisms by which advance care planning can lead to reduced care costs or improved cost-effectiveness, particularly for people who retain capacity. There is also a need to consider wider costs, including the costs of advance care planning facilitation or interventions and the costs of substitute health, social and informal care. Economic outcomes need to be considered in the context of quality benefits.

Exploring the cost-effectiveness of a one-off screen for dementia (for people aged 75 years in England and Wales).

OBJECTIVE: This paper examines the numbers of people with dementia who could be diagnosed and the likely cost-effectiveness of a one-off screen for dementia for people aged 75 years in England and Wales. METHODS: The study uses static decision modelling to compare a one-off screen for dementia with a no-screen scenario. Estimates for the model were drawn from systematic reviews, high-quality studies and government and administrative sources. A panel of experts also advised the study. RESULTS: An estimated 3514 people could be diagnosed as a result of screening, 2152 of whom would otherwise never receive a diagnosis. The study identified societal economic impact of between £3,649,794 (net costs) and £4,685,768 (net savings), depending on assumptions. CONCLUSIONS: Our analysis suggests that screening could be cost-effective, especially as treatments and social care interventions become more effective and if diagnosis by current routes remains low or occurs later than is optimal. This study was, however, limited by available evidence and a range of quality of life benefits, cost savings and potential harms could not be quantified. It was also beyond the scope of this study to consider dynamic factors such as repeat screening, mortality, disease trajectories or trends in the numbers of people with dementia. A larger study would be needed for this, involving more complex and innovative approaches to generating estimates for modelling. We did not compare population screening for people aged 75 years to other methods for increasing diagnosis rates.

Interactional perspectives on the mistreatment of older and vulnerable people in long-term care settings.

This article draws on a study aimed at developing theoretical and methodological understanding of the abuse and neglect (mistreatment) of older people in long-term care settings such as care homes and hospitals. It presents an interactionist account of mistreatment of older people in such establishments. Starting with an outline of definitional issues surrounding the topic, the allied concept of dignity is also briefly explored, and one important model described; we present dignity as the converse of mistreatment. The article argues for the potential of a positioning theory analysis of mistreatment. Positioning theory proposes that interactions are based on taking of 'positions', clusters of rights and duties to act in certain ways and impose particular meanings, which enable or prohibit access to certain storylines. It is argued that 'malignant' positioning can contribute to the creation of a climate that allows mistreatment to take place, or fails to prohibit its development. Mistreatment of people with dementia is used as an illustration, and it is argued that this is potentially generated by negative feedback loops of behaviour patterns, interpretations and malignant positioning by staff or family carers and subsequent response to these interpretations by the person with dementia. Positioning theory also allows for an explanation of the importance and impact of organizational cultures and social factors such as ageism. Individual staff members take positions, use meanings and develop storylines imbued with such factors. This understanding therefore overcomes some of the potential confusions created by concepts such as organizational or institutional abuse, removing the need to ascribe intentions and personal responsibility to such constructs. The article concludes with some suggestions for further research to develop an understanding of the kinds of cultures that allow mistreatment and consequently to inform the development of protective measures.