Using choice modelling to inform service sustainability for dementia Meeting Centres for people living with dementia in the UK.

OBJECTIVES: This study explores the preferences and willingness-to-pay (WTP) of carers for Meeting Centres (MCs) attributes in assisting individuals with mild to moderate dementia. METHOD: Preferences from 108 carers, gathered through UK-wide MC networks, were collected using a Discrete Choice Experiment survey. The survey incorporated attributes derived from evidence synthesis and lay consultation. A regression model estimated preference weights and marginal WTP for a change in attributes one a time within the MC support 'package.' RESULTS: Carers preferred MCs offering a balanced mix of practical activities and emotional support, along with flexibility without booking requirements and low costs. Social opportunities and the frequency of the meeting were not prioritised. Respondents expressed a WTP of £43 to stay with 'My MC,' the preferred option, compared to transitioning to an alternative in-person MC, all else being equal. Various factors, including attendance modality, the relationship with the supported person, age, and gender, influenced carers' choices. CONCLUSION: These findings offer valuable insights into carers' preferences, priorities, and WTP within MC support for those with mild to moderate dementia. Understanding these factors can guide the implementation and sustainability of MCs, ensuring alignment with carers' needs and preferences and, ultimately, enhancing support for individuals with dementia.

Strategic and operational issues in sustaining community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 2.

OBJECTIVES: Support for people with dementia in their communities is neither robust nor consistent in the UK, often bolstered by third sector/grass-roots initiatives facing formidable challenges in sustaining long-term. The Get Real with Meeting Centres project explored factors involved in sustaining one such form of community-based support. This is the second of two linked articles outlining learning from this realist evaluation of Meeting Centres (MCs) for people with dementia and carers, which focusses on findings regarding their operational and strategic running. METHOD: Semi-structured interviews and focus group discussions were conducted with 77 participants across three MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using soft systems methodology and realist logic of analysis. RESULTS: Forty-two 'context-mechanism-outcome' statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding three key areas for MC sustainability: External relationships and collaboration; Internal relationships and practices; and Finances and funding. CONCLUSION: Collaboration is essential to sustaining community-based initiatives such as MCs, particularly between local community and regional level. MCs need to be vigilant in mitigating pressures that create 'mission drift', as targeting a gap in the care pathway and maintaining a person-centred ethos are central to MCs' appeal. Stable, ongoing funding is needed for stable, ongoing community dementia support. More formal recognition of the value of social model community-based initiatives, helped by improved data collection, would encourage more robust and consistent community dementia support.

Reaching people and managing membership in community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 1.

OBJECTIVES: There is a need to improve the provision and reach of community services for people living with dementia, a goal in which community-based support groups can play a key role. The Get Real with Meeting Centres project aimed to explore factors involved in the success and sustainability of Meeting Centres (MCs) a form of community-based support proliferating in the UK. This is the first of two linked articles outlining learning from this realist evaluation of MCs, which focusses on findings around reach and membership. METHOD: Semi-structured interviews and focus group discussions were conducted with 77 participants across three case study MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using both soft systems methodology and realist logic of analysis. RESULTS: Fifty-two 'context-mechanism-outcome' statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding four key areas for MC sustainability: Referrals and the dementia care pathway; Reaching people and membership; Carer engagement and benefit; and Venue and location. CONCLUSION: Strong links with formal services and a well-functioning dementia care pathway are essential to sustaining community-based group support such as MCs; group support is also well-placed to assist work to improve pathway issues. Clarity of offer (including benefit to carers), and a wide range of activities, are key to appeal and reach; transport to, and use of, venue are challenges, as are pressures to support people with more advanced dementia.

Costing resource use of the Namaste Care Intervention UK: a novel framework for costing dementia care interventions in care homes.

OBJECTIVES: To develop a representative full cost model for a UK version of the multi-component, non-pharmacological Namaste Care intervention for care home residents with advanced dementia. DESIGN: The Namaste Care Intervention UK comprises multiple individual cost components, and a comprehensive list of all possible resources that could be expended in each cost component formed the initial stage of the cost model development. Resource use was divided into three key areas: staff, capital and consumables. Representative costs were identified for each of the possible resources, with a standard approach being used for all resources within each of the three key areas.Assumptions were made regarding the number and duration of sessions, group size, involvement of different staff members, and additional activity before and after a session, as these all have an impact on resource use and hence cost. A comparable 'usual care' session for residents not receiving Namaste Care was also costed to enable the 'additional' cost of delivering Namaste Care to be calculated. RESULTS: The full cost model indicates that Namaste Care Intervention UK costs approximately £8-£10 more per resident per 2-hour session than a comparable period of usual care. However, positive impacts on resident and staff well-being resulting from receiving Namaste Care will also have their own associated costs/benefits which may negate the 'additional' cost of the intervention. CONCLUSIONS: The cost model provides the first opportunity to investigate the full costs associated with Namaste Care, and will be refined as additional information is captured during subsequent phases of the research.

The impact of the implementation of the Dutch combined Meeting Centres Support Programme for family caregivers of people with dementia in Italy, Poland and UK.

Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands.Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers.Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p = 0.04, d = 0.55) and less caregiver distress (p = 0.02, d = 0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n = 81) and 6 months (n = 84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP.Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended.

Evaluation of the implementation of the Meeting Centres Support Program in Italy, Poland, and the UK; exploration of the effects on people with dementia.

OBJECTIVES: MEETINGDEM investigated whether the Dutch Meeting Centres Support Programme (MCSP) could be implemented in Italy, Poland, and the UK with comparable benefits. This paper reports on the impact on people living with dementia attending pilot Meeting Centres in the 3 countries. METHODS: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared with Usual Care (UC) on outcomes measuring behavioural and psychological symptoms (NPI), depression (CSDD), and quality of life (DQoL, QOL-AD), analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. RESULTS: Pre/post data were collected for 85 people with dementia and 93 carers (MCSP) and 74 people with dementia /carer dyads' receiving UC. MCSP showed significant positive effects for DQoL [Self-esteem (F = 4.8, P = 0.03); Positive Affect (F = 14.93, P < 0.00); Feelings of Belonging (F = 7.77, P = 0.01)] with medium and large effect sizes. Higher attendance levels correlated with greater neuropsychiatric symptom reduction (rho = 0.24, P = 0.03) and a greater increase in feelings of support (rho = 0.36, P = 0.001). CONCLUSIONS: MCSPs showed significant wellbeing and health benefits compared with UC, building on the evidence of effectiveness from the Netherlands. In addition to the previously reported successful implementation of MCSP in Italy, Poland, and the UK, these findings suggest that further international dissemination of MCSP is recommended.

FITS into practice: translating research into practice in reducing the use of anti-psychotic medication for people with dementia living in care homes.

OBJECTIVES: This paper reports on the acceptability and effectiveness of the FITS (Focussed Intervention Training and Support) into Practice Programme. This intervention was scaled up from an earlier cluster randomised-controlled trial that had proven successful in significantly decreasing antipsychotic prescribing in care homes. METHOD: An in depth 10-day education course in person-centred care was delivered over a three-month period, followed by six supervision sessions. Participants were care-home staff designated as Dementia Care Coaches (DCCs) responsible for implementing interventions in 1 or 2 care homes. The course and supervision was provided by educators called Dementia Practice Development Coaches (DPDCs). Effectiveness data included monitoring antipsychotic prescriptions, goal attainment, knowledge, attitudes and implementation questionnaires. Qualitative data included case studies and reflective journals to elucidate issues of implementation. RESULTS: Of the 100 DCCs recruited, 66 DCCs completed the programme. Pre-post questionnaires demonstrated increased knowledge and confidence and improved attitudes to dementia. Twenty per cent of residents were prescribed antipsychotics at baseline which reduced to 14% (31% reduction) with additional dose reductions being reported alongside improved personalised goal attainment. Crucial for FITS into Practice to succeed was the allocation and protection of time for the DCC to attend training and supervision and to carry out implementation tasks in addition to their existing job role. Evaluation data showed that this was a substantial barrier to implementation in a small number of homes. DISCUSSION AND CONCLUSIONS: The FITS into practice programme was well evaluated and resulted in reduction in inappropriate anti-psychotic prescribing. Revisions to the intervention are suggested to maximise successful implementation.

Enabling hospital staff to care for people with dementia.

This is the fourth and final article in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. Dementia training in hospitals is often inadequate and staff do not always have sufficient knowledge of dementia to provide appropriate care. It can also be difficult for them to identify when patients with dementia are in pain, especially when their communication skills deteriorate. The case studies presented illustrate how two NHS trusts have worked to ensure that their staff are fully equipped to care for people with dementia in hospital. Basildon and Thurrock University Hospitals NHS Foundation Trust in Essex made dementia training a priority by including dementia awareness in staff induction across a range of roles and providing additional training activities tailored to meet staff needs. Nottingham University Hospitals NHS Trust focused on pain assessment, aiming to standardise its approach for patients with dementia. The pain assessment in advanced dementia tool was chosen and piloted, and is being implemented across the trust after a positive response.

Improving activity and engagement for patients with dementia.

This is the second in a short series that presents case study examples of the positive work achieved by trusts that participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. Staff often think that there is insufficient time to get to know patients and carers, especially with large and challenging workloads. Combined with a lack of activities and stimulation for patients with dementia in hospital, this can result in poor engagement and a disconnect between staff and patients. To improve these relationships and give staff more time with patients, Cambridge University Hospitals NHS Foundation Trust has introduced bay nursing for patients with dementia, where one nurse is responsible for monitoring a bay alongside a healthcare assistant for an entire shift. Part of Betsi Cadwaladr University Health Board, Glan Clwyd Hospital in north Wales has focused on improving stimulation by creating an activity room with a specially trained activity worker, providing a relaxed and friendly setting where patients with dementia can take part in a range of activities and have lunch together.

Introduction to the transforming dementia care in hospitals series.

A short series of articles in Nursing Older People, starting in September, presents case study examples of the positive work achieved by trusts that participated in the RCN's development programme to improve dementia care in acute hospitals. This introductory article reports on the independent evaluation of the programme. The programme included a launch event, development days, site visits, ongoing support by the RCN lead and carer representatives and a conference to showcase service improvements. The evaluation drew on data from a survey, the site visits, trust action plans and a range of self-assessment tools for dementia care. The findings highlight substantial progress towards programme objectives and learning outcomes and suggest that the programme provided the focus, impetus and structure for trusts to make sustainable changes. It also equipped participants with the strategies and confidence to change practice. Recommendations are made for taking the programme forward.

Improving the hospital environment for people with dementia.

This article is the third in a series presenting examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. The hospital environment is often disorientating for people with dementia and can be particularly distressing when a patient is admitted in an emergency. Subsequent ward moves can also be disruptive and confusing, especially if they take place out of hours. Two NHS trusts aimed to improve the experience for patients with dementia by addressing the physical environment along with practical aspects of care provision at different stages in the hospital journey. The Queen Elizabeth Hospital King's Lynn NHS Foundation Trust in Norfolk enhanced its emergency department environment by redesigning four bays and an observation area to be dementia-friendly. The hospital has supported these changes by providing dementia awareness training for all staff in these areas. Walsall Healthcare NHS Trust focused on minimising ward moves by implementing procedures to identify patients who should not be moved. Since introducing the new process, adherence has been good and there have been fewer ward moves.

Understanding the needs of people with dementia and family carers.

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Public health guidance to facilitate timely diagnosis of dementia: ALzheimer's COoperative Valuation in Europe recommendations.

OBJECTIVE: ALzheimer's COoperative Valuation in Europe (ALCOVE) was a Joint Action co-financed by the European Commission to produce a set of evidence-based recommendations for policymakers on dementia. This paper reports on timely diagnosis. METHODS: Evidence was reviewed from scientific, policy and qualitative research. An online questionnaire was completed by experts from 24 European Union countries detailing current practice. An iterative process with people with dementia, family carers and professionals was utilised to develop recommendations. RESULTS: Advances in the technical aspects of diagnosis have changed what is understood by early diagnosis. Although research into preclinical stages is crucial, diagnosing at these very earliest stages is not recommended as regular practice. On balance, it is suggested that citizens should have access to accurate diagnosis at a time in the disease process when it can be of most benefit to them. The term timely diagnosis is used to reflect this. The diagnosis can help citizens and their families make sense of what is happening and make lifestyle changes and plans for the future. The central principles identified to maximise benefit and to reduce harm associated with diagnosis at an earlier stage included reducing stigma about dementia; respecting the rights of the individual; recognising that how the diagnosis is given will impact on subsequent adjustment and that post diagnostic support are required for the person and their family. Detailed recommendations are provided for timely detection, the diagnostic process, complex diagnoses, response to early cognitive changes and workforce. CONCLUSIONS: The recommendations can be utilised at a local, national and European level to benchmark progress.

'You're in a new game and you don't know the rules: Preparing carers to care'.

AIM: Being an informal carer for a person living with dementia can be a demanding role which can have detrimental effects on personal well-being and affect a person's ability to provide care for their loved one. This evaluation of support courses, offered by a leading UK charity dedicated to dementia family carers, highlights the impact of training to support the caring role. SETTING: Participants completed booklets at the training venue and subsequently online or by post. Interviews with participants took place by telephone. Participants: 84 participants completed booklets containing measures which generated quantitative data whilst 19 family carers participated in qualitative telephone interviews. DESIGN: A mixed methods approach was taken using booklets of validated measures to capture quantitative data, including capture of demographic information, together with semi-structured interviews conducted by telephone which were recorded, transcribed and subsequently analysed using thematic analysis. RESULTS: Overall, both the quantitative and qualitative analysis demonstrate that attending the carers support courses had a positive impact on carers with improvements being maintained over time. Outcomes indicated that carers generally remained in a better physical, mental and emotional situation than that experienced before the course. CONCLUSION: Being prepared for the trajectory of the caring role when providing care for a person living with dementia can help informal carers to be better prepared, better supported and better informed. Evidence gained from this evaluation demonstrates the impact of the courses and adds to the current weak evidence base relating to dementia courses aimed at preparing carers to care.

Care home uniforms: exploring stakeholders' views on clothing options for staff.

BACKGROUND: Views in the care home community are divided regarding whether or not staff should wear a uniform. There is little research on the topic and the views of care home residents and their relatives are rarely sought. AIM: To capture the views of staff, residents, relatives and visiting professionals in two care homes on the use of uniforms. METHODS: This small-scale exploratory study used photographs showing three clothing options: a formal option, a polo shirt option and an 'own clothes' option. Each option was modelled in two different poses, one 'approachable' and the other 'unapproachable'. Staff, relatives, the wider care home team and visiting professionals expressed their preferences by replying to a short survey. Residents, all of whom had dementia, expressed their preferences through a table-top activity. FINDINGS: Overall, the formal clothing option was preferred for formal care activities and the 'own clothes' option was preferred for social activities. The polo shirt option often obtained the second-highest number of preferences. The photographs featuring the 'unapproachable' pose were rarely selected. CONCLUSION: The approachability of staff is just as important as the clothes they wear. An alternative to formal uniforms could be for staff to wear polo shirts, possibly as an interim measure to explore the effects of changing the care home's staff uniform policy.

Sustainability of locally driven centres for those affected by dementia: a protocol for the get real with meeting centres realist evaluation.

INTRODUCTION: Improving support for people with early to moderate dementia to live at home in their communities is a global public health goal. Community adult social care is not robust in many parts of the UK, however, with the pandemic increasing pressure on services for this population. Community-led interventions can play a key role in supporting people postdiagnosis, helping delay decline, but many interventions struggle to sustain beyond 1-2 years. Meeting Centres (MCs) are one such intervention, which many UK community groups find attractive and achievable. However, it is not understood how these communities can ensure they are putting in place strategies that will help them sustain in the longer term, beyond start-up phase. METHODS AND ANALYSIS: This realist evaluation aims to understand the factors affecting sustainability of MCs in rural areas and learn lessons from MCs that have sustained beyond 3 years. Data will be collected using mixed methods: interviews and group discussions with stakeholders involved at every level in three case study locations in England and Wales, analysed with Soft Systems modelling; a Discrete Choice Experiment exploring what people across the UK value and are willing to pay for MCs, analysed with regression modelling. All data will be synthesised using a Realist logic of analysis to build a theoretical model of how, why, for whom, in what contexts and to what extent MCs can be successfully implemented for the long term. ETHICS AND DISSEMINATION: As participants may lack capacity for informed consent, favourable ethical opinion was received from a Health Research Authority research ethics committee. Resulting recommendations will be of interest to stakeholders including those commissioning, planning, running, supporting or attending MCs, as well as policy-makers and healthcare professionals. Knowledge will be shared with emerging MCs to help accelerate scale up of this intervention.

What is the evidence for the activities of Namaste Care? A rapid assessment review.

OBJECTIVES: To assess the quality of research evidence for the different activity components for the psycho-social Namaste Care intervention for care home residents with advanced dementia. DESIGN: Namaste Care is a multi-component intervention delivered on a daily basis to people living with advanced dementia or people at end of life with dementia. A significant part of its operationalisation within care homes is the delivery of a number of activities delivered by trained in-house Namaste Care workers to a group of residents with similar high dependency needs. The Namaste Care workers focus on touch, music, nature, sensory experience, aromas and interactions with objects delivered in a way to enhance feelings of enjoyment and wellbeing. This review evaluated the evidence for using these activities with people living with advanced dementia. A systematic search of peer-reviewed research articles was conducted between November 2016 and September 2018 using search terms of activities used in Namaste Care. The quality of each accepted article was rated using the Rapid Evidence Assessment scale. RESULTS: The initial literature search returned 1341 results: 127 articles including 42 reviews were included. The majority of activity interventions yielded between 10 and 20 peer-reviewed papers. The use of smells and aromas, interacting with animals and dolls, the use of various forms of music (e.g. background music, singing, personalised music), nature, lighting, various forms of touch/massage and sensory interventions (including Snoezelen) all appear to have proven efficacy with people living with advanced dementia. CONCLUSIONS: There is generally a limited number of research papers and reviews in this area, but overall there is a good evidence base for including these activities within Namaste Care for people living with advanced dementia.

Costs and cost-effectiveness of the meeting centres support programme for people living with dementia and carers in Italy, Poland and the UK: The MEETINGDEM study.

We examined the costs and cost-effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015-2016 from MCSP and usual care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We examined participants' health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: quality-adjusted life years (EQ-5D-5L-derived); QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were €5,941higher in MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was zero over willingness-to-pay (WTP) ranging from €0 to €350,000. On QOL-AD, the probability of cost-effectiveness of MCSP was 50% at WTP of €5,000 for a one-point increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-effectiveness of 99% at WTP over €8,000. On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests that it may be cost-effective in relation to gains in dementia-specific quality of life measures. MCs offer effective tailored post-diagnostic support services to both people with dementia and carers in a context where few evidence-based alternatives to formal home-based social services may be available.

The Impact of Implementing a Namaste Care Intervention in UK Care Homes for People Living with Advanced Dementia, Staff and Families.

Care homes can struggle to provide optimal care for residents with advanced dementia. Namaste Care provides a structured daily programme of physical, sensory and emotional care delivered by regular care workers. A three-year, mixed method process study of implementation and impact created a manualised Namaste Care Intervention for UK care homes (NCI-UK). This article reports on the impact of NCI-UK delivered consistently in five care homes for 12-24 weeks. Impact for residents was assessed using, pre-post data, showing significant positive effects for QUALID (t = 2.92, p = 0.01, n = 31) and CMAI (t = 3.31, p = 0.002, n = 32), alongside many qualitative examples of positive impacts on wellbeing, responsiveness and communication. Pre-post staff questionnaire data (n = 20) were not significant. Qualitative data indicated that NCI-UK is a positive staff experience, providing sense of purpose, improved wellbeing and relationships. The care homes reported benefiting from implementing NCI-UK in terms of reputation and quality improvement. Family interviews were also positive, relating to seeing the difference, improving relationships and being involved. NCI-UK can therefore be recommended as an impactful intervention for residents, staff and families.