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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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

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.

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., (© 2020 John Wiley & Sons Ltd.)

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., (© 2019 John Wiley & Sons, Ltd.)

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.

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.

Background: There is a growing need for an evidence-based approach to home support for people with dementia and their carers following diagnosis but research on the effectiveness and cost-effectiveness of different approaches is sparse. The Dementia Early Stage Cognitive Aids New Trial (DESCANT) will evaluate the clinical and cost-effectiveness of a range of memory aids, training and support to people with mild to moderate dementia and their carers at home and compares that intervention with treatment as usual., Methods/design: This is a multi-site, pragmatic randomised trial preceded by a feasibility study and internal pilot. We aim to allocate at random 360 pairs comprising a person with mild to moderate dementia and an identified carer between the DESCANT intervention and treatment as usual. We assess participants at baseline, 13 and 26 weeks. The primary outcome measure is the Bristol Activities of Daily Living Scale; other participant outcomes include cognition, quality of life, activities of daily living and social networking; carer outcomes include quality of life, sense of competence and mental health. To enhance this quantitative evaluation we are conducting a qualitative component and a process evaluation to assess the implementation process and identify contextual factors associated with variation., Discussion: The DESCANT intervention reflects current policy to enhance the capabilities of people with dementia after diagnosis and their carers. If it is clinically and cost-effective, its modest nature and cost will enhance the likelihood of it being incorporated into mainstream practice., Trial Registration: Current Controlled Trials, ISRCTN12591717 . Registered on 29 July 2016. Protocol number: 31288: North West - Haydock Research Ethics Committee, 20/06/2016, ref.: 16/NW/0389.

Aim: The aim of this study was to explicate the outcomes of home support interventions for older people with dementia and/or their carers to inform clinical practice, policy and research., Background: Most people with dementia receive support at home. However, components and effectiveness of home support interventions have been little explored., Design: Systematic review with narrative summary., Data Sources: Electronic searches of published studies in English using PubMed, Cochrane Central Register of Controlled Trials, PsychINFO, CINAHL, Applied Social Science Index and CSA Social Services Abstracts. Databases and sources were searched from inception to April 2014 with no date restrictions to locate studies., Review Methods: The PRISMA statement was followed and established systematic review methods used. Using 14 components of care for people with dementia and their carers, identified previously, data across studies were synthesized. Interventions were grouped and described and effectiveness ratings applied. Qualitative studies were synthesized using key themes., Results: Seventy studies (four qualitative) were included. Most were directed to carers and of high quality. Seven interventions for carers and two for people with dementia were identified, covering 81% of studies. Those relating to daily living, cognitive training and physical activity for people with dementia were absent. Measures of effectiveness were influenced mainly by the intensity (duration and frequency) of interventions. Those containing education, social support and behaviour management appeared most effective., Conclusion: These interventions reflect emergent patterns of home support. Research is required to identify effective interventions linked to the stage of dementia, which can be applied as part of routine clinical care., (© 2017 John Wiley & Sons Ltd.)

Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area., Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'., Results: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001)., Conclusions: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in 'living well' but for which there remains limited evidence.

Aim: To synthesize evidence to identify the components of effective psychosocial interventions in dementia care to inform clinical practice, policy and research., Background: With population ageing, dementia represents a significant care challenge with 60% of people with dementia living at home., Design: Overview of systematic reviews with narrative summary., Data Sources: Electronic searches of published systematic reviews in English using Cochrane Database of Systematic Reviews, DARE and EPPI-Centre, between September 2013 - April 2014., Review Methods: Systematic reviews were appraised against Cochrane Collaboration levels of effectiveness. Components of psychosocial interventions were identified with their theoretical rationale. Findings were explored with a Patient, Public and Carer Involvement group., Results: Thirty-six systematic reviews were included. From interventions, 14 components were identified, nine for people with dementia and five for carers, mostly undertaken in nursing/care homes. For people with dementia, there was evidence of effectiveness for cognitive stimulation and cognitive training, but less evidence for sensory stimulation, reminiscence, staff education, behavioural therapy and ADL training. For carers, there was evidence of effectiveness for education and training, psychotherapy and counselling., Conclusion: There was a lack of definitive evidence of effectiveness for most psychosocial interventions. Further studies with stronger methodology or replication of existing studies would strengthen the evidence base. Few interventions were undertaken with people with dementia and their carers living at home. Further work will investigate the extent to which components identified here are present in models of home support for people with dementia and carers and their effectiveness., (© 2017 John Wiley & Sons Ltd.)

Background: Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers., Methods: This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers., Conclusions: This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

Aim: To review the evidence for home support approaches directed at tertiary prevention; ameliorating difficulties and enhancing well-being., Background: With population ageing dementia represents a significant care challenge with 60% of people with dementia living at home. However, little is known about existing forms of home support and their relative effectiveness., Design: A two-stage design: First, an overview of systematic reviews of psychosocial interventions for dementia to identify their components; second, a systematic review of the effectiveness of home support interventions to older people with dementia/their carers., Methods: We will search electronic databases using specific search terms with additional searches of other known studies. Data will be extracted by two reviewers according to pre-determined categories. An initial synthesis will elicit components of interventions from stage 1 and operationalize them in terms of specific techniques. These will then be used in synthesis of data in stage 2, to determine the extent to which each home support intervention relies on these components and distill evidence concerning outcomes. Studies from stage 2 are expected to be methodologically diverse; if so, a narrative approach to synthesis will be taken. Study findings will be explored with Patient, Public and Carer Involvement groups., Discussion: The review seeks to develop a theory of home support: how and why interventions may work; in what contexts; and for whom. We will identify effective home support approaches, informing policy-makers and establishing how they might be experienced by people with dementia and their carers., (© 2015 John Wiley & Sons Ltd.)

Background: Current policy in England emphasises the importance of caring for highly dependent older people for as long as possible at home. It is therefore crucial that day care services are effective and widely available., Aim: To compare the type and standard of care provided for older people with dementia in day centre and day hospital settings., Methods: A cross-sectional postal survey design was employed. Representatives from three-quarters of identified specialist day care services for older people with dementia in the North West of England provided information on a range of indicators including: basic structural features; delivery of care; service content; and quality measures., Results: Day hospitals tended to have more day care places and a greater number of attendees, but lower occupancy rates than day centres. Day hospitals reported higher standards of care in relation to systematic assessment and care planning, promotion of rehabilitation, carer involvement and individualised provision of care. They were also more likely to employ building design features to encourage independence and choice for people with dementia. A higher proportion of day centres provided services exclusively to older people with dementia and a greater proportion of staff in day centres had undergone specific training in caring for people with dementia. Day centres were also more likely to have effective transport arrangements in place., Conclusion: The standards developed for the study were sufficiently reliable to allow for an acceptable estimate of quality. Day centres and day hospitals appeared to perform two distinct, but complementary functions. These results provide key material for shaping the provision of day care for older people with dementia, especially given the absence of national standards in this area.

Background: Delivering integrated and specialist mental health services for the growing population of older people with dementia in Britain is a key concern of the present government., Aims: To consider the nature of current practice among multi-disciplinary and single discipline health and social care teams providing a service to people with dementia and compare the quality of service offered., Methods: A postal survey of professional community teams in North West England, providing services to people with dementia. Responses were analysed according to a number of standards measuring service quality, developed from research and policy documents. A response rate of 59% yielded a final sample of 52 teams., Results: Multi-disciplinary teams scored more highly than single discipline teams on many of the measures used. Single discipline teams achieved a higher score on just one measure, culturally sensitive services. Generally teams were found to provide a more integrated, targeted and person-centred service, as measured in this study, compared with earlier findings. Teams performed less well on measures of flexibility and culturally sensitive provision., Conclusions: These findings indicate some potential gains from integration, and highlight the level of work still needed to achieve it. Further research is needed to build on the structural and process measures used in this research in order that the costs and outcomes consequent upon these practices can be measured., (Copyright 2005 John Wiley & Sons, Ltd.)

Objective: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people., Method: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Forty-three matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months., Results: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group., Discussion: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services., (Copyright 2002 John Wiley & Sons, Ltd.)

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. [ABSTRACT FROM AUTHOR]

The complexity and diversity of the needs of older people in care homes presents challenges to those responsible for caring for residents, in particular nursing and care assistant staff providing the majority of direct care. This study examines the degree of knowledge and confidence of these staff in caring for people with dementia and seeks to identify factors which can contribute to greater confidence. It reveals that although staff knowledge of dementia is reasonable, confidence in dealing with related situations is lower. Results also suggest that training can positively influence staff confidence in dealing with behaviour associated with the condition, recognizing that it is one of many factors influencing performance as a paid carer. These findings are discussed in terms of the quality of care provided to residents with dementia, the forms such training might take and the importance of a work environment which facilitates on-the-job training. [ABSTRACT FROM AUTHOR]

There has been debate for some years as to whether the best model of care for people with dementia emphasises specialist facilities or integrated service provision. Although the United Kingdom National Service Framework for Older People recommended that local authority social services departments encourage the development of specialist residential care for people with dementia, uncertainty continues as to the benefits of particular care regimes, partly because research cvidence is limited. This paper examines a large number of ‘performance measures’ from long-term care facilities in North West England that have residents with dementia. Of the 287 in the survey, 56 per cent described themselves as specialist services for elderly people with mental ill-health problems (known familiarly as ‘EMI homes’). It was envisaged that EMI homes would score higher than non-EMI homes on several measures of service quality for people with dementia that were developed from research evidence and policy documents. The analysis, however, found that EMI homes performed better than non-EMI homes on only a few measures. While both home types achieved good results on some standards, on others both performed poorly. Overall, EMI and non-EMI homes offered a similar service. [ABSTRACT FROM AUTHOR]

Objective To examine the relationship between care management arrangements and the Care Programme Approach (CPA) in the context of old age mental health services and, particularly, dementia services. Method The information reported is from a national study of care management arrangements, funded by the Department of Health. A response rate of 77% was obtained from local authority social services departments. Results In old age mental health services over half of the respondents reported joint screening arrangements for health and social care, almost four-fifths reported both joint criteria for the allocation of key workers and a clear definition of monitoring responsibilities. Of the latter over two-fifths were reported as being the same in care management and the CPA. Forty-six per cent of respondents provided a specialist service for people with dementia. Three-fifths of respondents reported that they did not apply CPA to people with dementia who were in receipt of care management or did so in less than 20% of cases. Where the CPA was applied it was more likely that a priority would be accorded to care management. A quarter of respondents reported the shared use of assessment documentation for people with dementia. Discussion The findings are set in the context of service developments to date and the implementation of the two systems of community based coordinated care for older people with mental health problems. Inter-authority variations are noted and the potential for greater service integration within the current legislative framework assessed. Copyright © 2001 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]