Dementia Early-Stage Cognitive Aids New Trial (DESCANT) of memory aids and guidance for people with dementia: randomised controlled trial.

BACKGROUND: Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE: To investigate effects of memory aids and guidance by dementia support practitioners (DSPs) for people in early-stage dementia through a pragmatic, randomised controlled trial. METHODS: Of 469 people with mild-to-moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) Score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; S-MMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS: DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS Score increased to 14.6 (SD: 10.4) in intervention and 12.6 (SD: 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between-group difference was 0.38 (95% CI: -0.89 to 1.65, p=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS: This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers. TRIAL REGISTRATION NUMBER: Current Controlled Trials ISRCTN12591717.

Exploratory pilot study on resource allocation along the dementia continuum under constrained and unconstrained budget scenarios.

BACKGROUND: People with dementia and their carers have a wide range of health and social care needs which vary along the dementia continuum. The government response to events and transitions at various stages of the continuum can have a substantial impact on the lived experience of dementia and to resource allocation decision-making. Hearing what practitioners have to say about need at various points of transition along the dementia continuum is very important, especially for the resource allocation process. METHODS: The paper uses an innovative longitudinal balance of care (BoC) methodology to identify the impact of changes along the dementia care continuum for care recipients and practitioners throughout the course of the condition. Participatory workshops were held with five Health and Social Care Professionals (HSCPs) to pilot a mixed methods approach to resource allocation decision-making along the dementia continuum. In these workshops, these practitioner participants were asked to generate a set of services and supports for a person with dementia with changing and evolving needs over a five year period under two budget scenarios: no budget constraint (NBC); and a budget constraint (BC). Participants were asked to recommend services for short, post event, transition periods and for longer steady state periods. RESULTS: Participants were able to allocate different packages of services and supports for different stages of dementia under different budgetary conditions. The total cost for the five year period under the NBC scenario is €200,000 on average, reducing to €133,000 under the BC scenario. Under the BC (NBC) scenarios, participants spent on average 85% (90%) of their budget on community services and 15% (10%) on nursing home services. CONCLUSION: The methodology used in this paper is a valuable complement to cross-sectional BoC studies through its identification of the importance of events, transitions and staging along the dementia care continuum. The desire of participants to keep people with dementia living in their own home is strong, even in the later stages of dementia, as evident by their recommendation to spend €400 per week more on home care provision compared to the alternative residential care, albeit in the absence of any budget constraints.

Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios.

BACKGROUND: People with dementia and their carers have a wide range of health and social care needs. People with dementia, carers and health and social care professionals (HSCPs) all have different perspectives on dementia care. Differences among these groups are important for commissioners of services and for front-line HSCPs. OBJECTIVE: To compare the service recommendations of people with dementia and carers with those of HSCPs, under different budgetary conditions. METHODS: A mixed-methods approach, which builds on the Balance of Care method, was used. Nine workshops were held with 41 participants from three groups: people with dementia, carers and HSCPs. Participants were asked to make decisions on a set of services for case types of dementia under two scenarios: a no budget constraint (NBC) scenario and a budget constraint (BC) scenario. RESULTS: While each group allocated resources in broadly similar overall proportions, important differences in emphasis emerged: (i) people with dementia and carers placed more emphasis on psychosocial supports than HSCPs; (ii) carers put more emphasis on respite opportunities for carers; and (iii) carers identified residential care as the most suitable setting for the person with dementia more frequently than health care professionals. CONCLUSION: Our findings suggest that the importance of psychosocial interventions, including counselling and peer support programmes, are currently underestimated by HSCPs. The provision of in-home respite is highly valued by carers. Even with unconstrained resources, some carers do not judge home care to be a viable option for dementia case types with high-level care needs.

Implementing the Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: mixed-method process evaluation alongside a pragmatic randomised trial.

OBJECTIVES: The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package designed to improve the cognitive abilities, function and well-being of people with early-stage dementia and their carers, by providing a range of memory aids, together with appropriate training and support. This sub-study aimed to assess implementation and identify contextual factors potentially associated with participant outcomes. METHOD: A mixed-methods approach was adopted alongside the pragmatic randomised trial. Data were obtained from intervention records and interviews with five dementia support practitioners across seven National Health Service Trusts in England and Wales. A reporting framework was constructed from available literature and data assessed by descriptive statistics and thematic analysis. RESULTS: Participation and engagement was high with 126 out of 128 participants completing the intervention with packages tailored to individual participants. Misplacing items and poor orientation to date and time were common areas of need. Memory aids frequently supplied included orientation clocks (91%), whiteboards (60%), calendars (43%) and notebooks (32%), plus bespoke items. Intervention duration and timing were broadly consistent with expectations. Variation reflected participants' needs, circumstances and preferences. Qualitative findings suggested a potentially positive impact on the well-being of people with dementia and their carers. Issues associated with successful roll-out of the intervention are explored in the discussion. CONCLUSION: Successful implementation increased confidence in future findings of the randomised trial. Depending on these, DESCANT may prove a scalable intervention with potential to improve the function and quality of life of people with dementia and their carers.

Hospital admissions and place of death of residents of care homes receiving specialist healthcare services: A systematic review without meta-analysis.

AIM: To synthesize evidence on the ability of specialist care home support services to prevent hospital admission of older care home residents, including at end of life. DESIGN: Systematic review, without meta-analysis, with vote counting based on direction of effect. DATA SOURCES: Fourteen electronic databases were searched from January 2010 to January 2019. Reference lists of identified reviews, study protocols and included documents were scrutinized for further studies. REVIEW METHODS: Papers on the provision of specialist care home support that addressed older, long-term care home residents' physical health needs and provided comparative data on hospital admissions were included. Two reviewers undertook study selection and quality appraisal independently. Vote counting by direction of effect and binomial tests determined service effectiveness. RESULTS: Electronic searches identified 79 relevant references. Combined with 19 citations from an earlier review, this gave 98 individual references relating to 92 studies. Most were from the UK (22), USA (22) and Australia (19). Twenty studies were randomized controlled trials and six clinical controlled trials. The review suggested interventions addressing residents' general health needs (p < .001), assessment and management services (p < .0001) and non-training initiatives involving medical staff (p < .0001) can reduce hospital admissions, while there was also promising evidence for services targeting residents at imminent risk of hospital entry or post-hospital discharge and training-only initiatives. End-of-life care services may enable residents to remain in the home at end of life (p < .001), but the high number of weak-rated studies undermined confidence in this result. CONCLUSION: This review suggests specialist care home support services can reduce hospital admissions. More robust studies of services for residents at end of life are urgently needed. IMPACT: The review addressed the policy imperative to reduce the avoidable hospital admission of older care home residents and provides important evidence to inform service design. The findings are of relevance to commissioners, providers and residents.

Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial.

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.

The Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: A goal attainment scaling approach to promote self-management.

OBJECTIVES: This study investigated goals identified by people with dementia and their carers to promote the self-management of symptoms and abilities; measured achievement using goal attainment scaling (GAS); and explored the reflections of Dementia Support Practitioners (DSPs) facilitating it. METHODS AND DESIGN: Within this pragmatic randomised trial, DSPs gave memory aids, training and support to people with mild to moderate dementia and their carers at home. Data were collected across seven NHS Trusts in England and Wales (2016-2018) and abstracted from intervention records and semi-structured interviews with DSPs delivering the intervention, supplemented by a subset of the trial dataset. Measures were created to permit quantification and descriptive analysis and interview data thematically analysed. A GAS measure for this intervention in this client group was derived. RESULTS: Engagement was high across the 117 participants and 293 goals were identified. These reflected individual circumstances and needs and enabled classification and assessment of their attainment. Seventeen goal types were identified across six domains: self-care, household tasks, daily occupation, orientation, communication, and well-being and safety. On average participants achieved nominally significant improvement regarding the specified goals of 1.4 with standard deviation of 0.6. Five interviews suggested that DSPs' experiences of goal setting were also positive. CONCLUSIONS: GAS is useful for assessing psychosocial interventions for people with early-stage dementia. It has a utility in identifying goals, promoting self-management and providing a personalised outcome measure. There is a strong case for exploring whether these clear benefits translate to other interventions in other populations in other places.

The older prisoner health and social care assessment and plan (OHSCAP) versus treatment as usual: a randomised controlled trial.

BACKGROUND: Older people are the fastest-growing demographic group among prisoners in England and Wales and they have complex health and social care needs. Their care is frequently ad hoc and uncoordinated. No previous research has explored how to identify and appropriately address the needs of older adults in prison. We hypothesised that the Older prisoner Health and Social Care Assessment and Plan (OHSCAP) would significantly increase the proportion of met health and social care needs 3 months after prison entry, compared to treatment as usual (TAU). METHODS: The study was a parallel randomised controlled trial (RCT) recruiting male prisoners aged 50 and over from 10 prisons in northern England. Participants received the OHSCAP or TAU. A clinical trials unit used minimisation with a random element as the allocation procedure. Data analysis was conducted blind to allocation status. The intervention group had their needs assessed using the OHSCAP tool and care plans were devised; processes that lasted approximately 30 min in total per prisoner. TAU included the standard prison health assessment and care. The intention to treat principle was followed. The trial was registered with the UK Clinical Research Network Portfolio (ISRCTN ID: 11841493) and was closed on 30 November 2016. RESULTS: Data were collected between 28 January 2014 and 06 April 2016. Two hundred and forty nine older prisoners were assigned TAU of which 32 transferred prison; 12 were released; 2 withdrew and 1 was deemed unsafe to interview. Two hundred and fifty three 3 prisoners were assigned the OHSCAP of which 33 transferred prison; 11 were released; 6 withdrew and 1 was deemed unsafe to interview. Consequently, data from 202 participants were analysed in each of the two groups. There were no significant differences in the number of unmet needs as measured by the Camberwell Assessment of Needs - Forensic Short Version (CANFOR-S). The mean number of unmet needs for the OHSCAP group at follow-up was 2.03 (SD = 2.07) and 2.06 (SD = 2.11) for the TAU group (mean difference = 0.088; 95% CI - 0.276 to 0.449, p = 0.621). No adverse events were reported. CONCLUSION: The OHSCAP was fundamentally not implemented as planned, partly due to the national prison staffing crisis that ensued during the study period. Therefore, those receiving the OHSCAP did not experience improved outcomes compared to those who received TAU. TRIAL REGISTRATION: Current Controlled Trials: ISRCTN11841493 , 25/10/2012.

Resource allocation across the dementia continuum: a mixed methods study examining decision making on optimal dementia care among health and social care professionals.

BACKGROUND: The understanding of appropriate or optimal care is particularly important for dementia, characterised by multiple, long-term, changing needs and the increasing expectations of people using services. However, the response of health and social care services is limited by resource constraints in most countries. This study sought to determine the optimal level, mix and cost of services for different dementia case types across the dementia continuum, and to better understand the resource allocation decision making process among health and social care professionals (HSCPs). METHODS: A balance of care framework was applied to the study questions and developed in three ways; firstly by considering optimality across the course of dementia and not just at the margin with residential care; secondly, through the introduction of a fixed budget to reveal constrained optimisation strategies; and thirdly through the use of a mixed methods design whereby qualitative data was collected at workshops using nominal group technique and analysed to obtain a more detailed understanding of the decision-making process. Twenty four HSCPs from a variety of disciplines participated in the resource allocation decision-making exercise. RESULTS: HSCPs differentiated between case type severity; providing 2.6 times more resources to case types with higher level needs than those with lower level needs. When a resource constraint was introduced there was no evidence of any disproportionate rationing of services on the basis of need, i.e. more severe case types were not favoured over less severe case types. However, the fiscal constraint led to a much greater focus on meeting physical and clinical dependency needs through conventional social care provision. There was less emphasis on day care and psychosocial provision when resources were scarcer following the introduction of a fixed budget constraint. CONCLUSIONS: HSCPs completed complex resource allocation exercises for people with dementia, including expected differentiation across case type severity. When rationing was introduced, HSCPs did not discriminate in favour of case types with high levels of need. They did, however, support conventional home care provision over psychosocial care, although participants were still keen to provide some residual cover for the latter, especially for case types that might benefit.

Commissioning social care for people with dementia living at home: Findings from a national survey.

OBJECTIVE: To explore the complexities, circumstances, and range of services commissioned for people with dementia living at home. METHODS: A national survey was used to collect data from English local authorities in 2015. Commissioners of services for older adults were invited to complete a questionnaire. An exploratory cluster analysis of nominal data was conducted using a TwoStep procedure to identify distinct groups. RESULTS: A total of 122 authorities (83%) responded to the request. Four approaches to commissioning were identified, reflecting commissioning practices at the organisational, strategic, and individual service user levels. Commissioning at the service user level was most apparent. Bivariate analysis found that these configurations were not associated with the types of dementia specific services provided but were related to the number available. Authorities delivered a greater range of specialist services when joint commissioning between social care and health partners was undertaken. However, the joint commissioning of services was less observed in services specifically for people with dementia than in generic services for all older people. There was limited evidence that local circumstances (population configuration and deprivation levels) were associated with this approach to commissioning. CONCLUSIONS: The significant role of health partners in the delivery of social care services to support older people living with dementia in their own homes is evident. As the population with dementia ages and physical health needs increase, how dementia specific services differ from and complement those services available to all older people warrants further investigation.

The Barts Explanatory Model Inventory for Dementia: An item reduction approach based on responses from South Asian communities.

BACKGROUND: Cultural differences in how the symptoms, causes, consequences, and treatments of dementia are understood and interpreted by South Asian people are a commonly expressed reason for late- or nonuse of mental health and care services. However, systematic collection of information on South Asian perceptions of dementia is hindered by a lack of appropriate instrumentation. OBJECTIVES: To produce a shortened version of the Barts Explanatory Model Inventory for Dementia (BEMI-D) schedule. METHODS: A two stage item reduction approach was employed first using multidimensional scaling categorizing items as core, intermediate, or outlier. Then, item review was undertaken using three criteria: literature importance, clinical face validity, and sub-group prevalence. The analysis followed a nonmetric multidimensional scaling method based on a two-way proximity matrix. RESULTS: The original BEMI-D had 197 items allocated to four checklists: symptoms, causes, consequences, and treatments. The two stage item reduction approach resulted in the removal of 75 items. These reductions were achieved across all four checklists in relatively equal proportions. There was no evidence of substantive content loss in the revised schedule. The reduced version of the schedule comprises 122 items. CONCLUSIONS: A condensed version of the BEMI-D is more efficient as an assessment schedule that captures the culturally diverse perceptions of memory problems for South Asians offering a balanced trade-off between feasibility of use and content validity.

Developing a model of best practice for teams managing crisis in people with dementia: a consensus approach.

BACKGROUND: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. METHODS: The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). RESULTS: One hundred sixty-five candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48 to 92/100. The median score for the crisis teams was 74.5 (range 67-92), and the median score for non-crisis teams was 60 (range 48-72). CONCLUSIONS: With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future.

Measuring the patient experience in community mental health services for older people: A study of the Net Promoter Score using the Friends and Family Test in England.

OBJECTIVES: The research aimed to explore the value of the Net Promoter Score as a service improvement tool and an outcome measure. The study objectives were to (1) explore associations between the Net Promoter Score with patient and service-receipt characteristics; (2) evaluate the strength of association between the Net Promoter Score and a satisfaction score; and (3) evaluate its test-retest reliability. METHODS: A postal survey was sent to service users on caseloads of community mental health teams for older people in four localities of England. The survey collected the Net Promoter Score, a single satisfaction question, and data on socio-demographics, clinical profile, and service receipt. Analysis used non-parametric tests of association and exploratory least squares regression. A second survey was administered for test-retest reliability analysis. Fieldwork concluded in April 2016. RESULTS: For 352 respondents, the Net Promoter Score was negatively related to age and was lowest for those still within 6 months of their initial referral. Receiving support from a psychiatrist and/or support worker was linked to higher scores. A strong but imperfect correlation coefficient with the satisfaction score indicates they evaluate related but distinct constructs. It had a reasonable test-retest reliability, with a weighted kappa of 0.706. CONCLUSIONS: Despite doubts over its validity in community mental health services, the Net Promoter Score may produce results of value to researchers, clinicians, service commissioners, and managers, if part of wider data collection. However, multi-item measures would provide greater breadth and improved reliability.

Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia.

BACKGROUND: Qualitative methods are increasingly included in larger studies to provide a richer understanding of people's experience. This paper explores the potential of using a novel approach to embedded qualitative design as part of an observational study examining the effectiveness of home support for people in later stage dementia in England. The method involved collecting and analysing unsolicited conversational comments made by participants as they completed standardised measures. An evaluation of the method is presented using the voices of participants to illustrate its potential. METHODS: The conversations of 17 carers recruited to an observational study were audio recorded to gather commentary made while completing a structured interview. Data were interrogated using thematic analysis to investigate the feasibility of conducting an embedded qualitative study, the potential richness of the material and participants' reactions to formal questioning and participating in research. RESULTS: The findings revealed that qualitative data were available from this approach. Analysis generated three themes from carers: conflicting carer emotions; the importance of maintaining normality and agency within day-to-day life; and tensions between these desires and making use of formal services. Important issues for carers were revealed establishing the benefit of using the method. The advantages of exploiting unsolicited conversation included enhancing understanding of people's lived experience, reducing participant burden in research and easing the process of data collection. In addition, it provided an opportunity to evaluate individuals' experience of the research process. CONCLUSIONS: The findings demonstrate how unsolicited comments during structured interviews may appear incidental but can reveal important aspects of living with dementia. The method also emphasised methodological challenges for research in dementia, including the influence and impact of the research context. Further research is required to evaluate the method with other groups including people with dementia themselves.

What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home. METHODS: Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops. RESULTS: One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). CONCLUSIONS: This paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

Carer preferences for home support services in later stage dementia.

OBJECTIVES: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia. METHOD: Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall. CONCLUSIONS: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

Age, memory loss and perceptions of dementia in South Asian ethnic minorities.

BACKGROUND: South Asian older adults are represented less frequently in mainstream mental health services or those for people with dementia. This study aimed to explore in detail the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems, as these influence help-seeking behaviour. METHODS: Participants were allocated to three groups: younger adults; older adults; and older adults with subjective memory problems. They completed the semi-structured Barts Explanatory Model Inventory for Dementia schedule, whilst older adults also completed measures of cognition (MMSE), and depression (GDS). Interviews were conducted in English, Gujarati or Urdu. RESULTS: Groups were similar in identifying unusual forgetting and confusion as the most frequent symptoms; stress and age as the most frequent causes; and talking to your GP/nurse, taking medication, and talking to family and friends as the most frequent treatments. Younger adults more often knew about risk factors and reported practical consequences more than older adults. Older adults with subjective memory problems were more likely to describe sleep related problems or symptoms commonly associated with depression. They more often cited as causes of dementia lack of sleep, side effects of medication and medical reasons, and mentioned religion as a means to cope. CONCLUSIONS: Findings highlight variability in perceptions of dementia across the South Asian Community and identify specific areas where dementia awareness could be raised in South Asian sub-groups to improve timely diagnosis, treatment outcomes and service access.

Hospital admissions and place of death of residents of care homes receiving specialist healthcare services: Protocol for a systematic review.

AIM: To synthesize the evidence relating to the ability of specialist care home support services to prevent the hospital admission of older care home residents, including hospital admission at the end-of-life. DESIGN: Systematic review and narrative synthesis. METHODS: Ten electronic databases will be searched from 2010 - 31 December 2018 using predetermined search terms. All studies of specialist healthcare services to meet care home residents' physical healthcare needs which provide outcome data on hospital admission or place of death compared with usual care will be included. Two reviewers will independently assess studies' eligibility and methodological quality using the Effective Public Health Practice Project Quality Assessment Tool. Data will be extracted by one reviewer and checked by a second according to predetermined categories. Data will be synthesized in evidence tables and narrative. Funder: National Institute for Health Research School for Social Care Research, November 2016. DISCUSSION: Care of older people in care home settings is a key aspect of nursing nationally and internationally. This review will increase understanding of the extent to which different models of specialist healthcare support for care homes are associated with key resident outcomes. IMPACT: Standard healthcare support for care home residents is often inadequate, resulting in avoidable hospital admissions and lack of resident choice as to place of death. Although a range of specialist healthcare services are emerging, little is known about their relative effectiveness. This paper marshalls evidence of relevance to commissioners investing in healthcare provision to care homes to meet NHS targets.

Community mental health teams for older people in England: Variations in ways of working.

OBJECTIVE: Integrated community mental health teams (CMHTs) are a key component of specialist old age psychiatry services internationally. However, in England, significant shifts in policy, including a focus on dementia and age inclusive services, have influenced provision. This study portrays teams in 2009 against which subsequent service provision may be compared. METHODS: A bespoke national postal survey of CMHT managers collected data on teams' structure, composition, organisation, working practices, case management, and liaison activities. RESULTS: A total of 376 CMHTs (88%) responded. Teams comprised a widespread of disciplines. However, just 28% contained the full complement of professionals recommended by government policy. Over 93% of teams had a single point of access, but some GPs bypassed this, and 40% of teams did not accept direct referrals from care homes. Initial assessments were undertaken by multiple disciplines, and 71% of teams used common assessment documentation. Nevertheless, many social workers maintained both NHS and local authority records. In 92% of teams, nominated care coordinators oversaw the support provided by other team members. However, inter-agency care coordination was less prevalent. Few teams offered the range of outreach/liaison activities anticipated in the national dementia strategy. CONCLUSIONS: Compared with previous studies, teams had grown and changed, with a clear increase in non-medical practitioners, particularly support workers. Measures to facilitate integrated care within CMHTs (eg, common access and documentation) were widespread, but integration across health and social care/primary and secondary services was less developed. Consideration of barriers to further integration, and the impact of current reforms is potentially fruitful.

Specialist services in early diagnosis and support for older people with dementia in England: Staff roles and service mix.

OBJECTIVES: This study investigated staff roles and tasks in Community Mental Health Teams (CMHT) and memory clinics, which are provided within a framework determined by local Clinical Commissioning Groups. METHODS: A cross-sectional survey design was used to collect data in England in 2015. Teams were identified by mental health providers (n = 68) and invited to complete a questionnaire. RESULTS: Fifty-one NHS Trusts responded to the request. The response rate varied. Data were obtained for all Clinical Commissioning Groups areas in 3 of the 9 regions in England, but only half in one of them. CMHTs were significantly more likely to have larger staff groups. Compared with memory clinics they were also more likely to have staff that were not professionally qualified. The occupational therapist role showed a strong association with the provision of all services in CMHTs. Both CMHTs and memory clinics provided information and advice about dementia. CMHTs provided more services associated with the support of a person with dementia at home. CONCLUSION: Variations in the staff mix in CMHTs and memory clinics reflected their different functions. There was limited evidence in both of profession specific interventions relating to the provision of support, information, therapy and education, associated with either diagnosis or long-term support. The potential for a single service to undertake both diagnostic and long-term support and the associated costs and benefits are areas for future research.