Dementia Support Research Articles

Approaches to Dementia Control in a Community in Japan

Abstract Background In order to consider future dementia countermeasures in the community, we conducted a survey to understand the characteristics of the elderly living in the community. Methods A self-administered questionnaire survey was conducted in collaboration with Hanno-city, Saitama Prefecture, targeting all persons aged 65 years or older (excluding institutionalized residents) living in Hanno-city (aging rate: 32.0%). The questionnaire items included basic attributes, lifestyle, daily living conditions, and willingness to participate in activities. The survey was sent to 7,133 people, and 3,623 valid responses were received (valid response rate: 50.8%). Results Respondents were 1,135 males (51.2%) and 1,080 females (48.8%); 1,979 (54.6%) were aged 65-74 and 1,644 (45.4%) were aged 75 and over. The proportion of single-person households was 12.1%. 56.1% of the respondents had been living in the community for 30 years or more, and the overall membership rate of the residents’ association was high at 91.0%. A total of 691 (19.1%) of the respondents had seen someone suspected of having dementia. 1,178 (32.5%) answered ‘yes,’ 1,452 (40.1%) answered ‘no,’ and 881 (24.3%) answered ‘don’t know. There were 472 (8.1%) dementia supporters. Conclusions The membership rate of local residents’ associations was high at 91.0%, indicating that the community maintains relatively close relationships with its residents. Based on the National Dementia plan, further consideration will be given to long-term goals such as human resource development for each region and policies to support these goals. Main messages: In a mountainous district with an aging population similar to that of Japan as a whole, only about one-third of the respondents knew of a contact point for dementia-related issues. Based on the National Dementia Plan, the government will consider dementia policies, including long-term goals and policies to support these goals in the community. Key messages • In a mountainous district with an aging population similar to that of Japan as a whole, only about one-third of the respondents knew of a contact point for dementia-related issues. • Based on the National Dementia Plan, the government will consider dementia policies, including long-term goals and policies to support these goals in the community.

Dementia knowledge of family caregivers in Indonesia: A cross-sectional survey study.

As the population ages, the prevalence of dementia in Indonesia is rapidly increasing. In Indonesia, dementia care is primarily provided by informal or family caregivers. However, there is limited information about these caregivers' understanding of dementia and the factors that may influence their knowledge. Given that family members are the primary source of dementia care in Indonesia, it is essential to understand their knowledge and identify any gaps to inform future educational interventions. To explore the knowledge of dementia among Indonesian family caregivers and identify the sociodemographic factors associated with dementia knowledge. A cross-sectional survey was conducted in 2022 with 200 family caregivers who were members of Alzheimer's Indonesia (ALZI) support groups. These caregivers received invitations via ALZI to complete a translated version of the Dementia Knowledge Assessment Scale (DKAS-I). Independent t-tests and ANOVAs were used to examine differences in dementia knowledge across various subgroups, such as gender, education, and age. Seventy-six family caregivers completed the DKAS-I (38% response rate). Respondents had an average age of 49 years, were mostly female, and the majority were children of people with dementia. Over two-thirds of the DKAS-I items were answered correctly by family caregivers, with the 'care considerations' domain scoring the highest. Age, relationship to the person with dementia (being a child), and prior dementia education were significantly correlated with higher dementia knowledge in our sample. Family caregivers of people living with dementia across 10 Indonesian provinces who were members of dementia support groups demonstrated moderate dementia knowledge. Targeted education is needed to address gaps in knowledge about communication and behavioural changes in people with dementia and other areas related to quality of care. There is an opportunity for gerontological nurses with specialised dementia knowledge to lead educational initiatives for family caregivers to enhance their capacity. Future research should also investigate the dementia knowledge of caregivers in the general population, who may be older and less educated compared to the participants in this study.

Examining support marshalling within an asynchronous online peer support forum for individuals affected by dementia.

Online support communities may provide individuals affected by dementia opportunities for reciprocal peer support, however, the support marshalling strategies employed and their success remain unclear. Analysis of 100 randomly selected conversation threads from the Dementia Support Forum indicated that 29% (29/100) of opening posts included a direct support marshalling strategy (i.e. explicit support request) compared with 54% (54/100) labelled as indirect, with the remainder not seeking support. Within the direct marshalling posts, informational support was the most frequently requested (n = 23), followed by network support (n = 7), emotional support (n = 5) and esteem support (n = 1) with analysis of subsequent posts confirming that the types of support requested were present within responses. Regardless of whether a direct or indirect strategy was used, most posts received a response, typically on the same day. Other response facets were comparable, apart from thread duration with conversations elicited through a direct strategy being longer (M = 39.71 vs 14.62 days).

Nested case control study of prevalence and aetiology of dementia in a rural Ugandan population, and a situational analysis of services available for affected families: a protocol. Part of the DEPEND Uganda study (Dementia EPidemiology, unmet Need and co-Developing Solutions).

The prevalence of dementia in low- and middle-income countries is increasing, yet epidemiological data from African populations remain scarce. Crucial risk factors differ in Africa from more intensively studied global areas, including a high burden of cerebrovascular disease and HIV, but lower rates of other risk factors like physical inactivity.Understanding dementia aetiology in African settings has been limited by the expensive and invasive nature of biomarker testing. This study leverages developments in blood-based and retinal imaging biomarker technology to examine the drivers of dementia in older Ugandans.People with dementia have complex needs benefiting from multi-dimensional support. Understanding current services will allow identification of barriers and opportunities to strengthen support available to people with dementia and their families. The study is nested within the existing General Population Cohort run by the MRC/UVRI & LSHTM Research Unit. Currently, all adults aged 60+ (around 1400) are undergoing brief cognitive screening.In Part 1, cohort participants will be selected based on cognitive screening scores to undergo detailed cognitive assessment, using methods developed by the 10/66 Dementia Research Group. Part 2 is a case control study of people with and without dementia using antecedent data, questionnaires, physical assessment, retinal imaging, and Alzheimer's blood-based biomarkers. We will also compare disability, frailty, quality of life, and social engagement in people with and without dementia.Part 3 assesses current provision of formal support for people with dementia through review of publicly available literature and expert interviews. This is the first study in Africa using blood-based and retinal imaging biomarkers to examine the pathological processes underlying dementia, and it will systematically map services available for people with dementia. This paves the way for effective policy strategies for both dementia prevention and support for people with dementia and their families.

Transitions of care for people living with dementia – insights using linked data

Objective People living with dementia have increasing care needs as their condition progresses, and tend to be high users of health and aged care. Linked data provide an opportunity to better understand transitions between services, to enable quality and timely care. Approach The pilot study used a new multi-source enduring linked dataset to analyse the use of health and residential aged care by Australians living with younger onset dementia between 2011–2016. The subsequent study focused on movements between hospital and residential aged care for older Australians who were hospitalised in 2017. ResultsThe younger onset dementia cohort comprised 5,400 Australians aged 30–69. More than half (58%) the cohort had moved from the community into residential aged care by the end of the study period. Of these, 21% had a hospital stay while living in the community that ended with entry to residential aged care. This important transition point was analysed further using a dementia cohort of 79,000 people aged 65 and over. One in 4 people (23%) with dementia who were living in the community moved into residential aged care within 7 days of a hospital stay. This group spent 20 days longer in hospital than other older people. People living in aged care were less likely than those in the community to return to hospital during the following year. ConclusionsThese results can help inform planning of community-based dementia support services, improve coordination of care, and investigate sources of delay for people awaiting entry to aged care.

Understanding the role of agency in the navigation of regional dementia care and support service pathways.

Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways. Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens' Theory of Structuration which considered the carers' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers' efforts. Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.

A Role-Needs Framework: Rethinking Support for Informal Caregivers for Alzheimer's Across the Global South and Global North.

Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the 'coping-effectiveness' framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs. In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors. We identified a framework of four cross-cultural caring approaches with implications for support: (1) Empathising, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) Organising, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) Non-identifying caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) Reluctance, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care. Our findings move beyond the 'coping-effectiveness' framework of support to suggest a novel 'role-needs' framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.

Dementia awareness raising forum: Improving attitudes towards people living with dementia.

Stigma surrounding dementia is a significant issue affecting individuals and communities leading to discrimination towards those living with the condition. However, the changing paradigm in dementia support to living well with dementia can reduce this stigma and improve community attitudes. A community initiative aimed to address this evaluated the impact of a two-hour education forum involving 92 community members. Presentations from experts, including a person with dementia, addressed dementia-related human rights issues and initiatives to live well with dementia. Attendees completed the new Dementia Community Attitudes Questionnaire (DCAQ) aligned with the evolving paradigm of living well with dementia before and after the forum. Participants with prior dementia education had higher initial scores while those without education showed more significant improvements. Almost all DCAQ items showed post-forum score improvements. This community Dementia Awareness Raising Forum provided an opportunity for people to come together and initiate conversations around dementia resulting in more positive community attitudes.

Promoting mealtime support for people with dementia: a pilot study of feasibility, acceptability, and preliminary effects of an educational intervention for direct care workers

ABSTRACT This mixed-methods single-arm repeated measures pilot study aimed to assess the feasibility, acceptability, and preliminary effects of an educational intervention designed to address mealtime challenges experienced by people with dementia and direct care workers. Feasibility was evaluated based on the screening, eligibility, consent, retention, and completion rates, as well as intervention adherence. Acceptability was assessed through a satisfaction questionnaire. As secondary outcomes, the study measured burnout, job satisfaction, feeding skills, and knowledge about dementia and mealtime support needs among direct care workers. For residents with dementia, the evaluation included assessments of food intake, time spent on a meal, and mealtime support needs. All feasibility rates were excellent, with the majority reaching 100%, except for the screening rate which was 89%. 81.3% of the direct care workers expressed high levels of satisfaction with the intervention. Qualitative analysis showed that participants appreciated the intervention, emphasizing its relevance and positive impact on their daily work. The results showed a significant decrease (p = .016, W = 0.265) in the burnout personal accomplishment subscale, an increase in job satisfaction (p = .001, W = 0.862) and in the knowledge test (p = .002, W = 2.571). The other outcomes were not statistically significant, despite having moderate and large effect sizes. The results suggested that the educational intervention is likely to be feasible and acceptable for direct care workers. Further research with a more robust study design and larger sample size is recommended to validate these findings and determine the extent of its benefits.

Pain prevalence, intensity, and association with neuropsychiatric symptoms of dementia in immigrant and non-immigrant aged care residents in Australia

Pain recognition for culturally diverse people is complex as pain experience is subjective and influenced by cultural background. We compared the prevalence, intensity, and association of pain with neuropsychiatric symptoms (NPS) between immigrants and non-immigrants living with dementia in residential aged care homes (RACHs) who were referred to two Dementia Support Australia programs. Immigrant status was defined by the documented country of birth. Pain and NPS were assessed using PainChek® and the Neuropsychiatric Inventory, respectively. Subgroup analyses were also completed for English-speaking and non-English-speaking immigrants. A total of 17,637 referrals [immigrants, n = 6340; non-immigrants, n = 11,297] from 2792 RACHs were included. There were no significant differences for the prevalence of pain across all groups. Immigrants were slightly more likely to have moderate pain or severe pain than non-immigrants. Non-English-speaking immigrants had 0.5 points higher total pain scores on average (Cohen’s d = 0.10 [0.05, 0.15], p < 0.001) than non-immigrants. Total pain score had a significant effect on total NPS severity scores in all groups. While pain prevalence is similar across groups, higher pain intensities are more common among immigrants living with dementia. Increased care staff awareness, education, and training about the potential effect of culture on pain expression is needed.

Development of Four-Item Attitudes toward People Living with Dementia Scale for population surveys.

This study developed a short version of a scale measuring attitudes toward people living with dementia, the Four-Item Attitudes toward People Living with Dementia Scale (APDS4), that could be included in a large population survey. We used three datasets from Japan: a web panel survey, a community-based mail survey, and data from a randomised controlled trial on dementia education. The original scale used was the Attitudes toward People Living with Dementia Scale developed by Kim and Kuroda. Test-retest reliability and item response theory analyses were used to reduce the number of items. The reliability, internal consistency, validity, and responsiveness of the short version were evaluated. Six items with low test-retest reliability and four items with low discrimination parameters were removed from the 14-item scale. The APDS4, consisting of four items, had test-retest reliability and internal consistency comparable to those of the original scale. Confirmatory factor analysis indicated that the APDS4 fit a unidimensional model. The validity of the APDS4 was confirmed by significant associations between the APDS4 scores and the original scale scores, knowledge of dementia, helping behaviour intentions toward people living with dementia, helping behaviour experience, attending the Dementia Supporter Training Course, and engagement in healthcare jobs. In a randomised controlled trial dataset, the APDS4 was more responsive to educational interventions than the original scale. The shortened APDS4 was established as a reliable, validated, and responsive scale. This scale can be used efficiently in population surveys to evaluate dementia-friendly initiatives at the community level.

Peer support for people with dementia: an exploratory study of two peer support models

In this article, perceived benefits, facilitators and challenges of peer support offered for and by people living with dementia are explored by comparing peer support provided by Dementia Lifestyle Coach (DLC) and Dementia Alliance International (DAI). Semi-structured interviews were conducted with interviewees from DLC and DAI. Interview recordings were transcribed verbatim and thematically analysed. Peer support offered by DLC and DAI provided connection and emotional and informational support and promoted living well with dementia. Each programme had unique barriers and facilitators. The article concludes that peer support for and by people living with dementia should be considered in post-diagnostic dementia support programmes.

Evaluating a model of best practice in primary care led post-diagnostic dementia care: feasibility and acceptability findings from the PriDem study

ObjectivesTo evaluate the feasibility and acceptability of a primary care-based intervention for improving post-diagnostic dementia care and support (PriDem), and implementation study procedures.DesignA non-randomised, mixed methods, feasibility study.SettingSeven general practices...

Correlates of missed or late versus timely diagnosis of dementia in healthcare settings.

There is limited evidence about factors related to the timeliness of dementia diagnosis in healthcare settings. In five prospective cohorts at Rush Alzheimer's Disease Center, we identified participants with incident dementia based on annual assessments and examined the timing of healthcare diagnoses in Medicare claims. We assessed sociodemographic, health, and psychosocial correlates of timely diagnosis. Of 710 participants, 385 (or 54%) received a timely claims diagnosis within 3 years prior to or 1 year following dementia onset. In logistic regressions accounting for demographics, we found Black participants (odds ratio [OR]=2.15, 95% confidence interval [CI]: 1.21 to 3.82) and those with better cognition at dementia onset (OR=1.48, 95% CI: 1.10 to 1.98) were at higher odds of experiencing a diagnostic delay, whereas participants with higher income (OR=0.89, 95% CI: 0.81 to 0.97) and more comorbidities (OR=0.94, 95% CI: 0.89 to 0.98) had lower odds. We identified characteristics of individuals who may miss the optimal window for dementia treatment and support. We compared the timing of healthcare diagnosis relative to the timing of incident dementia based on rigorous annual evaluation. Older Black adults with lower income, higher cognitive function, and fewer comorbidities were less likely to be diagnosed in a timely manner by the healthcare system.

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.

Development of an online tool to support financial and legal planning in dementia

ObjectiveTo develop, assess, and refine an online educational tool, Plan for Clarity, to support financial and legal planning in dementia. MethodsA Delphi mixed-method study with three rounds of anonymous review by lay and professional stakeholders was designed to reach consensus about the content of the online tool and explore the socio-cultural and behavioral factors that could affect access and use. ResultsConsensus showed that the online tool covered key information, knowledge, and communication skills for financial and legal planning. Study themes: 1) the online tool had to be easy to navigate with relevant, easily understood information; 2) people with early signs of memory difficulties would be able to use the tool; 3) a referral from a trusted source is a primary way to facilitate access and use of the tool; and 4) discussions about financial and legal issues should be held early, ahead of barriers that can block discussion. ConclusionThese data suggest this online tool is relevant and feasible for dementia care and support as well as aging more generally. InnovationPlan for Clarity is innovative as an evidence and theory-driven online education tool to address financial and legal planning for dementia care, particularly among underserved older adults.

‘Talking lines’: the stories of diagnosis and support as told by those with lived experience of rare forms of dementia

BackgroundPeople living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness.MethodsSemi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis.ResultsAnalysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care.ConclusionsThe use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants’ service provision which were working, the narratives pointed to future directions services might move in.

"Dementia Doesn't Mean That Life Doesn't Have More Wonderful Things Ahead": A Qualitative Study Evaluating a Canadian Dementia Support Services Program.

Community support programs can improve quality of life for people living with dementia and their care partners. Important to the successful implementation of such programs is close engagement with end-users to gain a better understanding of their needs. This study describes the perspectives of people living with dementia, care partners, and health-care providers on the First Link® dementia support program provided by the Alzheimer Society of British Columbia (ASBC). Following a large-scale survey (N=1,164), semi-structured interviews were conducted with participants to explore in greater detail the different needs and themes that emerged from the first phase of the study. The interviews explored: 1) experiences with the program; 2) future planning; 3) meaning of independence; and 4) impact of the program on emotional and physical well-being. A total of 48 participants were interviewed in this study. Knowledge and education were key factors that helped participants manage the impact of dementia. Learning about dementia, the experiences of others, strategies on how to manage symptoms, what to plan for in the future, and how to access different services in the community, was tied to increased feelings of confidence and comfort, and decreased stress. Participants also provided suggestions for improvement of the First Link® dementia program such as further embedding the program into the patient journey, providing more services in remote areas, providing education for health-care providers, and increasing awareness of the program. By emphasizing the lived experiences and needs of those living with dementia and their caregivers, this work will inform future research-based program evaluations globally and, in turn, improve the existing services to support people living with-and impacted by-dementia.

Dementia care landscape in Nepal: Understanding the context, barriers, and opportunities for the development of a national dementia care plan.

This study was conducted to comprehensively understand the context, barriers, and opportunities for improving dementia care, treatment, and support. The objective is to guide the development of a national dementia care plan. This document review was conducted by analyzing literature available in the public domain, including scientific publications, project documents/reports, media reports, and hospital records. Additionally, annual reports published by the Department of Health Services, national census and demographic and health survey reports, Old Age Homes, and other relevant government reports were examined. Firsthand information was gathered from relevant stakeholders based on the World Health Organization's situational analysis framework for dementia plans. This framework encompasses four domains: Policy context (national ministries, legislation, policies, strategies, plans related to dementia, mental health, aging, and disability), service delivery assessment (health and social care workforces, services, support and treatment programmes, and promotion of awareness and understanding), and epidemiological indicators (prevalence and incidence rates of dementia, risk factors). Ethical clearance was obtained from the Institutional Review Committee (IRC) of B.P. Koirala Institute of Health Sciences (IRC no.2658/023). Existing policies in Nepal inadequately address the needs of people with dementia and their caregivers. Concerning health services, the Government of Nepal provides financial subsidies to individuals diagnosed with dementia; however, numerous hurdles impede access to care. These obstacles include geographical and structural barriers, an inefficient public healthcare system, weak governance, financial constraints, low awareness levels, stigma, and inadequate workforce. Furthermore, the absence of robust nationally representative epidemiological studies on dementia in Nepal hampers the development of evidence-based plans and policies. Similarly, there are no interventions targeted at caregivers of people with dementia, and no initiatives for dementia prevention are in place. This review underscores the urgent need to formulate a comprehensive national dementia care plan to address the growing challenges. Key priority action areas include the integration of dementia care into primary healthcare services, training workforce to provide the care, increasing awareness, mitigating stigma, developing caregiver support programs, and initiating high-quality research to inform evidence-based policymaking.

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.