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.

Understanding 'value' in the context of community-based interventions for people affected by dementia: A concept analysis.

AIM: This study aimed to conduct a concept analysis of value in the context of community-based interventions for people affected by dementia. BACKGROUND: Concepts of value play a critical role in shaping the delivery and distribution of community-based health interventions through related concepts. However, the use and meaning of 'value' is rarely clarified limiting the term's utility in practice and research. Increasing need for community healthcare and scarce public resources means developing understanding of value in community-based interventions for people affected by dementia is timely, and may support more informed approaches to exploring, explaining and delivering value. DESIGN: Evolutionary Concept Analysis was used to systematically determine the characteristics of value. DATA SOURCES: Peer-reviewed and grey literature databases were searched between April and July 2021, with 32 pieces of literature from different disciplines included in the final sample. No limits were set for the years of literature retrieved. METHODS: Literature was thematically analysed for information on the antecedents, attributes and consequences of value. RESULTS AND DISCUSSION: The analysis uncovered a need and/or desire to understand the experience of people affected by or that affect interventions; and to demonstrate, prove/disprove the (best) quality and nature of results of interventions as antecedents of value. Attributes of value were stakeholder/person centred, measurable, time and context dependent and multidimensional. Consequences of the concept included shared decision-making, valuation of interventions and internal/external investment and development of interventions. CONCLUSION: Through concept analysis value can now be better understood and applied. The development of a conceptual model to illustrate the constituent elements and relationships of the concept adds transparency to where, why and how concepts of value are enabled that supports future concept development. PATIENT AND PUBLIC CONTRIBUTION: No patient or public contribution.

Does the Meeting Centre Support Programme decrease the experience of stigmatisation among people with cognitive deficits?

OBJECTIVES: This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries. METHOD: A pre/post-test control group study design compared outcomes for 114 people with dementia (n=74) and MCI (n=40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The 'Stigma Impact Scale, neurological disease' (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment. RESULTS: Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower (p=0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly (p=0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher (p=0.03) over time for UK participants receiving MCSP compared to UC. CONCLUSION: The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation.

BACKGROUND: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. METHODS: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. RESULTS: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. CONCLUSIONS: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

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.

Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK.

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes.Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer's Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS).Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q1 = 27; Q3 = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = -0.42, p = 0.000) and quality of life (QOL-AD; rho = -0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002).Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

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.

Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries.

ABSTRACTBackground:The "pathway to care" concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored. METHODS: An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands). RESULTS: Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors. CONCLUSIONS: This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s).

Care staff and the creative arts: exploring the context of involving care personnel in arts interventions.

BACKGROUND: Arts-based interventions play an important role in the care of people with dementia. Yet, creative arts are seldom implemented as a tool to enhance the care and wellbeing of people with dementia. METHODS: We examined the involvement of care staff in creative arts activities in residential care. Aspects of involvement that appear to influence outcomes in people with dementia were identified and analyzed. A broad systematic literature search of MedLine, EMBASE, PsychInfo, CINAHL, ASSIA, SCOPUS, and Web of Science led to the identification of 14 papers. The studies identified through the search process were examined in terms of intervention, context, mechanism and outcome, and the relationships between these aspects. RESULTS: Training sessions were identified as an opportunity to educate care personnel on useful techniques that are relevant to daily care practice. Evidence from the literature suggests that creative arts programs play a significant role in the way staff and residents interact and as a result influence the care practice of staff. Under certain conditions creative arts programs, that involve and engage staff, facilitate enhanced interactions and improve care strategies, which leads to the recognition and validation of personhood in residents with dementia. CONCLUSIONS: These findings provide a basis for illustrating which elements of care staff involvement in creative arts programs could be implemented in residential care contexts in order to have the upmost benefit.

From screening to synthesis: using nvivo to enhance transparency in qualitative evidence synthesis.

AIMS AND OBJECTIVES: To explore the experiences and perceptions of healthcare staff caring for people with dementia in the acute setting. This article focuses on the methodological process of conducting framework synthesis using nvivo for each stage of the review: screening, data extraction, synthesis and critical appraisal. BACKGROUND: Qualitative evidence synthesis brings together many research findings in a meaningful way that can be used to guide practice and policy development. For this purpose, synthesis must be conducted in a comprehensive and rigorous way. There has been previous discussion on how using nvivo can assist in enhancing and illustrate the rigorous processes involved. DESIGN: Qualitative framework synthesis. METHODS: Twelve documents, or research reports, based on nine studies, were included for synthesis. CONCLUSION: The benefits of using nvivo are outlined in terms of facilitating teams of researchers to systematically and rigorously synthesise findings. nvivo functions were used to conduct a sensitivity analysis. Some valuable lessons were learned, and these are presented to assist and guide researchers who wish to use similar methods in future. RELEVANCE TO CLINICAL PRACTICE: Ultimately, good qualitative evidence synthesis will provide practitioners and policymakers with significant information that will guide decision-making on many aspects of clinical practice. The example provided explored how people with dementia are cared for acute settings.

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.

The impact of dementia on women internationally: An integrative review.

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature focusing on the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high-income countries, and none were from low-income countries. The effects of caregiving on health, well-being, and finances are greater for women; issues facing women, particularly in low- and middle-income countries, need to be better understood. Research should focus on building resilience to help people adjust and cope long term.

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 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.

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.

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.

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.