Dementia detectives: Busting the myths

yesDescribes the one-hour dementia awareness programme developed for secondary schools

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

What do adolescents perceive to be key features of an effective dementia education and awareness initiative?

The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives in imperative in order to sustain dementia friendly communities. With this is mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities

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

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

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

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

The development of the Short Defeat and Entrapment Scale (SDES)

Previous research has suggested that defeat (conceptualized as a failed social struggle) and entrapment (conceptualized as a perceived inability to escape from aversive situations) form a single construct that reliably predicts psychopathological outcomes in clinical and community settings. However, scales designed to assess defeat and entrapment measure the constructs separately, whereas recent evidence suggests a single scale would be appropriate. Existing scales may also be too lengthy to have clinical utility. The present study developed and evaluated a scale that measured both defeat and entrapment. Exploratory and confirmatory factor analyses demonstrated that defeat and entrapment were best defined by a single factor, and 8 items were selected that best represented this construct to form the short scale. The scale had high internal consistency (α = .88 to .94), showed criterion validity with hopelessness (r = .45 to .93) and incremental validity for caregiver burden when controlling for depression and positive symptoms of psychosis when controlling for hopelessness (β = .45 to .60). Additionally, the scale had excellent test-retest reliability using single measures absolute agreement intraclass correlation coefficients across 12 months (ricc = .88 to .92) within 4 samples: people with posttraumatic stress disorder, people with psychosis, care home employees, and people from community settings. The scale demonstrated known group validity through discrimination between clinical and nonclinical groups of participants. This scale could be implemented within therapeutic settings to help clinicians identify patients experiencing defeat and entrapment, and incorporate these factors into their clinical assessment and case formulations for treatment