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

Introducing the Care Certificate evaluation (innovative practice)

Although investment in staff development is a prerequisite for high quality and innovative care, the training needs of unregistered care staff have often been neglected, particularly within dementia care provision. The Care Certificate, which was fully launched in in England in April 2015, has aimed to redress this neglect by providing a consistent and transferable approach to the training of the front line health and social care workforce. In order to optimise its impact, the implementation of the Care Certificate is now being evaluated through an 18 month study funded by the Department of Health Policy Research Programme. It is the purpose of this article to outline this evaluation

Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise.

-Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal’s Model of Self-Regulation suggests perceptions ofillness facilitate help-seeking behaviours such as the use of services. Thisscoping exercise makes use of the model to explore perceptions ofdementia in British Indian, African and Caribbean, and East and CentralEuropean communities in the United Kingdom. Between August 2013and April 2014, culturally specific dementia awareness roadshows wereattended by people living with dementia, carers and members of thepublic. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated indiscussion groups and a dementia knowledge quiz. Thematic andframework analysis were conducted on the discussion group data. Threemain themes are presented: Perceptions of dementia, awareness ofdementia in the wider family and community, and awareness and use ofservices. The findings suggest that although groups attributed a biologicalbasis for memory loss, a number of misconceptions prevailed regardingthe cause of dementia. Groups also made use of religion, as opposed tomedical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awarenessof services, and culturally specific barriers such as language. The findingshave a number of implications for policy and practice including thedevelopment of public health interventions and the need to focus further on reducing barriers to accessing services

Using mobile devices and apps to support reflective learning about older people with dementia

There has been little research to develop computing technologies to support the care of people with dementia, in spite of the growing challenges that the condition poses for society. To design such technologies, an existing model of computer-support reflective learning was instantiated with findings from a pre-design study in one residential home. The result was a mobile device running an adapted enterprise social media app to support person-centred care. Evaluations of the device and app in two residential homes revealed that use of the app both motivated and increased different styles of care note recording, but little reflective learning was identified or reported. The results suggest the need for more comprehensive and flexible computer-based support for reflective learning about residents in their care – and new designs of this more comprehensive support are also introduced

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

Outcomes of physical activity for people living with dementia: qualitative study to inform a Core Outcome Set

Background: The need for a Core Outcome Set to evaluate physical activity interventions for people living with dementia, across stages of disease and intervention settings has been established. This qualitative study precedes the consensus phase of developing this Core Outcome Set and aims to: (i) compare the outcomes identified by patients, carers and professionals to those previously reported in the literature; (ii) and understand “why” certain outcomes are considered important. Design and Methods: In-depth semi-structured interviews were conducted with people living with dementia, family carers and professionals (n=29). Firstly, the outcomes identified in the interviews were mapped to a list of outcomes reported in a recent literature review. Lastly, an in-depth thematic analysis were conducted to understand the importance of physical activity in dementia care. Results: A comprehensive, inductively derived list of 77 outcomes, common across stages of dementia and intervention setting, is now ready to be used in the consensus phase of this Core Outcome Set: ten of these were new outcomes generated by this qualitative study. Collectively, fFive themes explained why stakeholders perceived physical activity outcomes as important for people living with dementia: “being well and staying well”, “having a role towards others”, “maintaining identity”, “being connected to the present” and “delivering good quality care”. Conclusion: A total of 10 new outcomes of physical activity, not previously reported in recent literature, were identified by this qualitative study. Physical activity is considered important to people living with dementia due to its positive impact in multiple health outcomes for both patients and carers.publishe

Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence

Hossain, M., Crossland, J., Stores, R., Dewey, A., & Hakak, Y. (2020). Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence. Dementia, 19(5), 1441–1473. Copyright © [2020] (The Author) DOI: https://doi.org/10.1177%2F147130121880064

Evaluating the effectiveness and cost-effectiveness of Dementia Care Mapping™ to enable person-centred care for people with dementia and their carers (DCM-EPIC) in care homes: study protocol for a randomised controlled trial

Background Up to 90 % of people living with dementia in care homes experience one or more behaviours that staff may describe as challenging to support (BSC). Of these agitation is the most common and difficult to manage. The presence of agitation is associated with fewer visits from relatives, poorer quality of life and social isolation. It is recommended that agitation is treated through psychosocial interventions. Dementia Care Mapping™ (DCM™) is an established, widely used observational tool and practice development cycle, for ensuring a systematic approach to providing person-centred care. There is a body of practice-based literature and experience to suggests that DCM™ is potentially effective but limited robust evidence for its effectiveness, and no examination of its cost-effectiveness, as a UK health care intervention. Therefore, a definitive randomised controlled trial (RCT) of DCM™ in the UK is urgently needed. Methods/design A pragmatic, multi-centre, cluster-randomised controlled trial of Dementia Care Mapping (DCM™) plus Usual Care (UC) versus UC alone, where UC is the normal care delivered within the care home following a minimum level of dementia awareness training. The trial will take place in residential, nursing and dementia-specialist care homes across West Yorkshire, Oxfordshire and London, with residents with dementia. A random sample of 50 care homes will be selected within which a minimum of 750 residents will be registered. Care homes will be randomised in an allocation ratio of 3:2 to receive either intervention or control. Outcome measures will be obtained at 6 and 16 months following randomisation. The primary outcome is agitation as measured by the Cohen-Mansfield Agitation Inventory, at 16 months post randomisation. Key secondary outcomes are other BSC and quality of life. There will be an integral cost-effectiveness analysis and a process evaluation. Discussion The protocol was refined following a pilot of trial procedures. Changes include replacement of a questionnaire, whose wording caused some residents distress, to an adapted version specifically designed for use in care homes, a change to the randomisation stratification factors, adaption in how the staff measures are collected to encourage greater compliance, and additional reminders to intervention homes of when mapping cycles are due, via text message. Trial registration Current Controlled Trials ISRCTN82288852. Registered on 16 January 2014. Full protocol version and date: v7.1: 18 December 2015

Overview of systematic reviews. Effective home support in dementia care: Components and impacts, Stage 1, psychosocial interventions for dementia.

Aim: To synthesise 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, 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: 36 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