See me, not just the dementia - Understanding people's experiences of living in a care home.

yesThis report looks at the experiences of people with dementia living in care homes in England, with a particular focus on whether their care offers dignity and respect. Most similar studies have relied on the views of carers, care staff and people in the early stages of dementia. This study examines directly the experiences of people including those with advanced dementia

Researchers' experiences of the design and conduct challenges associated with parallel-group cluster-randomised trials and views on a novel open-cohort design

BACKGROUND: Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time. An 'open-cohort' design allows individual follow-up with recruitment before and after cluster-randomisation, but little literature exists on acceptability to inform their use in CRTs. AIM: To document the views and experiences of expert trialists to identify: a) Design and conduct challenges with established parallel-group CRT designs,b) Perceptions of potential benefits and barriers to implementation of open-cohort CRTs,c) Methods for minimising, and investigating the impact of, bias in open-cohort CRTs. METHODS: Qualitative consultation via two expert workshops including triallists (n = 24) who had worked on CRTs over a range of settings. Workshop transcripts were analysed using Descriptive Thematic Analysis utilising inductive and deductive coding. RESULTS: Two central organising concepts were developed. Design and conduct challenges with established CRT designs confirmed that current CRT designs are unable to deal with many of the complex research and intervention circumstances found in some trial settings (e.g. care homes). Perceptions of potential benefits and barriers of open cohort designs included themes on: approaches to recruitment; data collection; analysis; minimising/investigating the impact of bias; and how open-cohort designs might address or present CRT design challenges. Open-cohort designs were felt to provide a solution for some of the challenges current CRT designs present in some settings. CONCLUSIONS: Open-cohort CRT designs hold promise for addressing the challenges associated with standard CRT designs. Research is needed to provide clarity around definition and guidance on application.</p

Barriers and facilitators to implementing dementia care mapping in care homes: results from the DCM™ EPIC trial process evaluation

Background Psychosocial person-centred interventions are considered best practice for addressing complex behaviours and care needs such as agitation and anxiety, and for improving the quality of life of people with dementia in care homes. Dementia Care Mapping (DCM™) is an established practice development tool and process aimed to help care home staff deliver more person-centred care. To date, few studies have evaluated the efficacy of DCM™ and have found mixed results. These results are suggested to be the outcome of intervention implementation, which may be impacted by a range of factors. This study reports the barriers and facilitators to DCM™ implementation in care homes found during the process evaluation conducted as part of a randomized controlled trial. Methods Eighteen of the 31 DCM™ intervention care homes were recruited to participate in the embedded process evaluation. Semi-structured interviews were conducted with 83 participants, comprising care home managers, trained DCM™ users (mappers), expert external mappers, staff members, relatives, and residents. Results Barriers and facilitators to DCM™ implementation were found at the mapper level (e.g. motivation and confidence), the DCM™ intervention level (e.g. understanding of DCM™) and the care home level (e.g. staffing issues, manager support). Further barriers caused by the burden of trial participation were also identified (e.g. additional paperwork). Conclusions Implementing DCM™ is complex and a greater consideration of potential barriers and facilitators in planning future studies and in practice could help improve implementation

How should we capture health state utility in dementia? Comparisons of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L.

Objective Investigate the construct validity, criterion validity and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L. Methods The analysis used a three-wave, individual-level dataset of 1,004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal- and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, as well as other non-utility cognitive (FAST, CDR, CMAI) and HRQOL measures (QOL-AD-NH, QUALID). Construct validity, criterion validity and responsiveness was assessed using correlation, Bland-Altman plots and panel data regression models. Results Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR and CMAI, but did capture the resident’s own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than self-completed EQ-5D-5L. These formal- and informal-carer proxy-measures also better reflected changes in FAST, CDR and CMAI but didn’t capture the resident’s own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxies own view of the resident’s HRQOL (QUALID). This indicates discrepancies between a proxies-view and residents-view of the impact tangible declines in health, cognition or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, EQ5D-5L-proxy was typically more responsive than DEMQOL-Proxy-U to changes in CDR, FAST and CMAI, indicating that use of DEMQOL-Proxy-U is not always justified. Conclusion Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care

Researchers’ experiences of the design and conduct challenges associated with parallel-group cluster-randomised trials and views on a novel open-cohort design

Background Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time. An ‘open-cohort’ design allows individual follow-up with recruitment before and after cluster-randomisation, but little literature exists on acceptability to inform their use in CRTs. Aim To document the views and experiences of expert trialists to identify: a) Design and conduct challenges with established parallel-group CRT designs, b) Perceptions of potential benefits and barriers to implementation of open-cohort CRTs, c) Methods for minimising, and investigating the impact of, bias in open-cohort CRTs. Methods Qualitative consultation via two expert workshops including triallists (n = 24) who had worked on CRTs over a range of settings. Workshop transcripts were analysed using Descriptive Thematic Analysis utilising inductive and deductive coding. Results Two central organising concepts were developed. Design and conduct challenges with established CRT designs confirmed that current CRT designs are unable to deal with many of the complex research and intervention circumstances found in some trial settings (e.g. care homes). Perceptions of potential benefits and barriers of open cohort designs included themes on: approaches to recruitment; data collection; analysis; minimising/investigating the impact of bias; and how open-cohort designs might address or present CRT design challenges. Open-cohort designs were felt to provide a solution for some of the challenges current CRT designs present in some settings. Conclusions Open-cohort CRT designs hold promise for addressing the challenges associated with standard CRT designs. Research is needed to provide clarity around definition and guidance on application

The development and use of the Assessment of Dementia Awareness and Person-centred Care Training (ADAPT) tool in long-term care

Policy and practice guidelines recommend person-centred care (PCC) to support people to live well with dementia in long-term care (LTC). Therefore, staff working in LTC settings need to be trained in dementia awareness and PCC. However, the access to, content of and reach of training across LTC settings can be varied. Data on current and ongoing access to PCC training can form and important component of data gathered on usual care (UC) in research studies, in particular clinical trials within LTC. However, no suitable assessment tools are available to measure dementia awareness and PCC training availability, content and reach. This paper describes the development of a training audit tool to meet this need for a UC measure of dementia awareness and PCC training. The ‘Assessment of Dementia Awareness and Person-centred care Training’ (ADAPT) tool was based on a review of published PCC literature and consultation with dementia and aged care experts. The ADAPT tool was piloted in 13 LTC facilities the UK and Australia, before being used to assess the content of dementia and PCC awareness training in 50 UK settings in a randomized controlled trial (RCT) as part of a UC recording. Following pilot testing, modifications to the ADAPT tool’s wording were made to enhance item clarity. When implemented in the RCT, pre-baseline training assessment data showed that the ADAPT tool was able to differentiate between LTC and identify settings where further dementia awareness training was required. ADAPT was then used as a method of recording data on dementia awareness and PCC training as part of UC data collection. The ADAPT tool is suitable for use by researchers to establish the availability, content and reach of dementia and PCC awareness training to staff within research studies

The implementation of Dementia Care MappingTM in a randomised controlled trial in long-term care: results of a process evaluation

This study explored intervention implementation within a pragmatic, cluster randomised controlled trial of Dementia Care MappingTM (DCM) in UK care homes. DCM is a practice development tool comprised of a five component cycle (staff briefing, mapping observations, data analysis and reporting, staff feedback, action planning) that supports delivery of person-centred care. Two staff from the 31 intervention care homes were trained in DCM and asked to deliver three cycles over a 15-month period, supported by a DCM expert during cycle 1. Implementation data were collected after each mapping cycle. There was considerable variability in DCM implementation fidelity, dose and reach. Not all homes trained two mappers on schedule and some found it difficult to retain mappers. Only 26% of homes completed more than one cycle. Future DCM trials in care home settings should consider additional methods to support intervention completion including intervention delivery being conducted with ongoing external support

Best care options for older prisoners with dementia – a scoping review

Introduction: The prisoner population is ageing and consideration is needed for how to best support those with age-related health conditions in the system. Existing work practices and organisational structures often fail to meet the needs of prisoners with dementia, and prison staff experience high levels of burden due to these prisoners’ increased needs. Little is known about the best method of responding to the needs of this growing sub-population of prisoners. Method: A scoping review was conducted to answer the question: What are the perceived best care options for prisoners with dementia? To be included, publications had to be publicly available, reported on research findings, or viewed opinions and commentaries on care practices relevant to older prisoners with dementia. Searches were conducted in eleven databases to identify relevant publications. Data from the included publications were extracted and summarised into themes. Results: Eight themes were identified that could support better care practices for prisoners with dementia: (1) early and ongoing screening for older prisoners; (2) specialised services; (3) specialised units; (4) programs/activities; (5) adaptations to current contexts; (6) early release or parole for older prisoners with dementia deemed at low risk of re-offending; and (7) training younger prisoners (8) as well as staff to assist older prisoners with dementia. Besides practical strategies improving care practice, costs, prison-specific resources and staff skills were highlighted as care barriers across all themes. A lack of empirical evidence supported these findings. Conclusion: One of the implications of the international ageing prison population is higher numbers of people incarcerated with dementia. Suggestions for best care approaches for prisoners with dementia now need to move from opinion to empirical approaches to guide practice

Exploring the role of external experts in supporting staff to implement psychosocial interventions in care home settings: results from the process evaluation of a randomized controlled trial

Background: Psychosocial interventions offer opportunities to improve care for people with dementia in care homes. However, implementation is often led by staff who are not well prepared for the role. Some interventions use external experts to support staff. However little is known about external expert, care home staff and manager perceptions of such support. This paper addresses this gap. Methods: Multi-methods study within a process evaluation of a cluster randomised controlled trial of Dementia Care MappingTM (DCM). Interviews were conducted with six external experts who also completed questionnaires, 17 care home managers and 25 care home staff responsible for DCM implementation. Data were analysed using descriptive statistics and template analysis. Results: Three themes were identified: the need for expert support, practicalities of support and broader impacts of providing support. Expert support was vital for successful DCM implementation, although the five-days provided was felt to be insufficient. Some homes felt the support was inflexible and did not consider their individual needs. Practical challenges of experts being located at a geographical distance from the care homes, limited when and how support was available. Experts gained knowledge they were able to then apply in delivering DCM training. Experts were not able to accurately predict which homes would be able to implement DCM independently in future cycles. Conclusions: An external expert may form a key component of successful implementation of psychosocial interventions in care home settings. Future research should explore optimal use of the expert role

Collecting self-report data with people with dementia: Benefits, challenges, and best-practice

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits; [1] improving the delivery of person-centred care, [2] hearing the voice of people with dementia, [3] residents spending time with researchers, [4] improving researcher understanding, and [5] having an evidence base from multiple sources. We also identified five main challenges; [1] effective communication, [2] fluctuating capacity, [3] causing distress to residents, [4] time pressures, and [5] staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection