A suite of evaluation resources for Dementia Friendly Communities: Development and guidance for use.

OBJECTIVES: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England. METHODS: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. RESULTS: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs. CONCLUSIONS: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice.

Dementia-friendly communities: The involvement of people living with dementia.

BACKGROUND: Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement. METHODS: This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters. FINDINGS: All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and 'ad hoc' conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs. CONCLUSION: The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

Societal Need for Interdisciplinary Ageing Research: An International Alliance of Research Universities "Ageing, Longevity and Health" Stream (IARU-ALH) Position Statement.

Ageing is a global concern with major social, health, and economic implications. While individual countries seek to develop responses to immediate, pressing needs, international attention and collaboration is required to most effectively address the multifaceted challenges and opportunities an ageing global population presents in the longer term. The Ageing, Longevity and Health stream of the International Alliance of Research Universities (IARU-ALH) was built on a solid foundation of first-class interdisciplinary research and on innovative outreach and communication centres. This interdisciplinary network conducts projects that span biology, medicine, social sciences, epidemiology, public health, policy, and demography, and actively engages with the public and other societal stakeholders. Here we posit that such international interdisciplinary networks are needed and uniquely placed to address major challenges related to health and ageing and ultimately will produce new understanding and knowledge to promote the awareness of healthy ageing and encourage societal change via novel, science-informed interventions. Global interdisciplinary research presents great potential and opportunities to accelerate our understanding of human ageing and to produce new, more effective solutions to a pressing, complex problem. However, more focused, strategic efforts and investments are required in order to deliver on these potentials and reap maximum benefits for individuals and societies. IARU-ALH members are determined to contribute, in collaboration with others, to delivering on this vision.

A survey of the experience of living with dementia in a dementia-friendly community.

Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experience of living in a DFC. Two-hundred and forty people living with dementia completed a cross-sectional survey in six DFCs across England. Around half of respondents reported they were aware they were living in a DFC. Being aware of living in a DFC was associated with taking part in leisure activities (p = 0.042), community centre attendance (p = 0.009), being involved in organised activities or groups (p < 0.001), feeling understood (p = 0.008), and feeling valued for their own contributions to the community (p = 0.002). This study illustrates the contribution that surveys can make in facilitating the expression of views and experiences of people living with dementia. Awareness of living within a DFC is associated with greater involvement in, and belonging to, the wider community.

How is Respect and Social Inclusion Conceptualised by Older Adults in an Aspiring Age-Friendly City? A Photovoice Study in the North-West of England.

The World Health Organisation (WHO) Global Age-Friendly Cities (AFC) Guide classifies key characteristics of an AFC according to eight domains. Whilst much age-friendly practice and research have focused on domains of the physical environment, those related to the social environment have received less attention. Using a Photovoice methodology within a Community-Based Participatory Research approach, our study draws on photographs, interviews and focus groups among 26 older Liverpool residents (60+ years) to explore how the city promotes respect and social inclusion (a core WHO AFC domain). Being involved in this photovoice study allowed older adults across four contrasting neighbourhoods to communicate their perspectives directly to Liverpool's policymakers, service providers and third sector organisations. This paper provides novel insights into how: (i) respect and social inclusion are shaped by aspects of both physical and social environment, and (ii) the accessibility, affordability and sociability of physical spaces and wider social processes (e.g., neighbourhood fragmentation) contributed to or hindered participants' health, wellbeing, intergenerational relationships and feelings of inclusion and connection. Our findings suggest that respect and social inclusion are relevant across all eight domains of the WHO AFC Guide. It is core to an AFC and should be reflected in both city-based policies and evaluations.

Dementia Friendly Communities in England: A scoping study.

OBJECTIVES: To describe the characteristics of Dementia Friendly Communities (DFCs) across England in order to inform a national evaluation of their impact on the lives of those affected by dementia. METHODS: DFCs in England were identified through online searches and Alzheimer's Society records. A subsample (n = 100) were purposively selected for in-depth study based on online searches and, where necessary, follow-up telephone calls. Data collection and analysis were guided by a pilot evaluation tool for DFCs that addressed how DFCs are organised and resourced and how their impact is assessed. The evidence was predominantly qualitative, in addition to some descriptive quantitative information. RESULTS: Of 284 DFCs identified, 251 were defined by geographical location, while 33 were communities of interest. Among 100 sampled DFCs, 89 had been set up or started activities following policy endorsement of DFCs in 2012. In the resourcing of DFCs, statutory agencies and charities played an important role. Among DFC activities, awareness raising was cited most commonly. There was some evidence of involvement of people living with dementia in organisational and operational aspects of DFCs. Approaches to evaluation varied, with little evidence of findings having effected change. CONCLUSIONS: DFCs are characterised by variation in type, resourcing, and activities. England has policy endorsement and a recognition system for DFCs. These can be important catalysts for initiation and growth. A systematic approach to evaluation is lacking. This would enable DFCs to be consistent in how they demonstrate progress and how they enable people living with dementia to live well.

The place for dementia-friendly communities in England and its relationship with epidemiological need.

OBJECTIVES: The dementia-friendly community (DFC) initiative was set up to enable people living with dementia to remain active, engaged, and valued members of society. Dementia prevalence varies nationally and is strongly associated with the age and sex distribution of the population and level of social deprivation. As part of a wider project to evaluate DFCs, we examined whether there is a relationship between provision of DFCs and epidemiological need. METHODS: Dementia-friendly communities were identified through the formal recognition process of DFC status by the Alzheimer's Society and mapped against areas defined by English Clinical Commissioning Groups. We tested whether provision of a DFC was associated with: (1) dementia prevalence, (2) number of known cases, and (3) known plus estimated number of unknown cases. RESULTS: Of the 209 English Clinical Commissioning Group areas, 115 had at least one DFC. The presence of a DFC was significantly associated with number of known dementia cases (mean difference = 577; 95% CI, 249 to 905; P = 0.001) and unknown dementia cases (mean difference = 881; 95% CI, 349 to 1413; P = 0.001) but not prevalence (mean difference = 0.03; 95% CI, -0.09 to 0.16; P = 0.61). This remains true when controlling for potential confounding variables. CONCLUSIONS: Our findings suggest that DFC provision is consistent with epidemiological-based need. Dementia-friendly communities are located in areas where they can have the greatest impact. A retrospective understanding of how DFCs have developed in England can inform how equivalent international initiatives might be designed and implemented.

An evaluation tool for Age-Friendly and Dementia Friendly Communities.

PURPOSE: The purpose of this paper is to report how an evaluation tool originally developed for Age-Friendly Cities was pilot-tested in the context of the Dementia Friendly Community (DFC) initiative of the city of Sheffield/UK. It presents finding and outputs on which other communities with dementia friendly agendas can draw. DESIGN/METHODOLOGY/APPROACH: The original evaluation tool was adapted to a focus on dementia friendliness. Data collection involved scoping conversations, documentary analysis, interviews and group discussions. Following evidence appraisal, Sheffield's approach to dementia friendliness was assessed. A local steering group was central to the study. FINDINGS: The evidence indicates areas of strength in Sheffield's approach to dementia friendliness: involvement of older people; service provision; collaboration; monitoring and evaluation. Scope for improvement was identified around resource allocation, and use of existing guidance on dementia friendliness. Recommendations for policy and practice include enhancing pooling of resources, more detailed recording of resources allocated to dementia-related activity, and collection of evidence on how people affected by dementia have shaped the city's DFC initiative. Key research outputs are an adaptable logic model and an emerging evaluation framework for DFCs. RESEARCH LIMITATIONS/IMPLICATIONS: The study was a short pilot with limited resources. Its findings and outputs must be considered preliminary. ORIGINALITY/VALUE: The findings and outputs provide a basis for further research. The study has suggested key components of an evaluation framework for DFCs. It is informing ongoing work to develop such a framework.

Identifying inequitable healthcare in older people: systematic review of current research practice.

BACKGROUND: There is growing consensus on the importance of identifying age-related inequities in the receipt of public health and healthcare interventions, but concerns regarding conceptual and methodological rigour in this area of research. Establishing age inequity in receipt requires evidence of a difference that is not an artefact of poor measurement of need or receipt; is not warranted on the grounds of patient preference or clinical safety; and is judged to be unfair. METHOD: A systematic, thematic literature review was undertaken with the objective of characterising recent research approaches. Studies were eligible if the population was in a country within the Organisation for Economic Co-operation and Development and analyses included an explicit focus on age-related patterns of healthcare receipt including those 60 years or older. A structured extraction template was applied. Extracted material was synthesised in thematic memos. A set of categorical codes were then defined and applied to produce summary counts across key dimensions. This process was iterative to allow reconciliation of discrepancies and ensure reliability. RESULTS: Forty nine studies met the eligibility criteria. A wide variety of concepts, terms and methodologies were used across these studies. Thirty five studies employed multivariable techniques to produce adjusted receipt-need ratios, though few clearly articulated their rationale, indicating the need for great conceptual clarity. Eighteen studies made reference to patient preference as a relevant consideration, but just one incorporated any kind of adjustment for this factor. Twenty five studies discussed effectiveness among older adults, with fourteen raising the possibility of differential effectiveness, and one differential cost-effectiveness, by age. Just three studies made explicit reference to the ethical nature of healthcare resource allocation by age. While many authors presented suitably cautious conclusions, some appeared to over-stretch their findings concluding that observed differences were 'inequitable'. Limitations include possible biases in the retrieved material due to inconsistent database indexing and a focus on OECD country populations and studies with English titles. CONCLUSIONS: Caution is needed among clinicians and other evidence-users in accepting claims of healthcare 'ageism' in some published papers. Principles for improved research practice are proposed.

A model of how targeted and universal welfare entitlements impact on material, psycho-social and structural determinants of health in older adults.

A growing body of research attests to the impact of welfare regimes on health and health equity. However, the mechanisms that link different kinds of welfare entitlement to health outcomes are less well understood. This study analysed the accounts of 29 older adults in England to delineate how the form of entitlement to welfare and other resources (specifically, whether this was understood as a universal entitlement or as targeted to those in need) impacts on the determinants of health. Mechanisms directly affecting access to material resources (through deterring uptake of benefits) have been well documented, but those that operate through psychosocial and more structural pathways less so, in part because they are more challenging to identify. Entitlement that was understood collectively, or as arising from financial or other contributions to a social body, had positive impacts on wellbeing beyond material gains, including facilitating access to important health determinants: social contact, recognition and integration. Entitlement understood as targeted in terms of individualised concepts of need or vulnerability deterred access to material resources, but also fostered debate about legitimacy, thus contributing to negative impacts on individual wellbeing and the public health through the erosion of social integration. This has important implications for both policy and evaluation. Calls to target welfare benefits at those in most need emphasise direct material pathways to health impact. We suggest a model for considering policy change and evaluation which also takes into account how psychosocial and structural pathways are affected by the nature of entitlement.

Age-related references in national public health, technology appraisal and clinical guidelines and guidance: documentary analysis.

Background: older people may be less likely to receive interventions than younger people. Age bias in national guidance may influence entire public health and health care systems. We examined how English National Institute for Health & Care Excellence (NICE) guidance and guidelines consider age. Methods: we undertook a documentary analysis of NICE public health (n = 33) and clinical (n = 114) guidelines and technology appraisals (n = 212). We systematically searched for age-related terms, and conducted thematic analysis of the paragraphs in which these occurred ('age-extracts'). Quantitative analysis explored frequency of age-extracts between and within document types. Illustrative quotes were used to elaborate and explain quantitative findings. Results: 2,314 age-extracts were identified within three themes: age documented as an a-priori consideration at scope-setting (518 age-extracts, 22.4%); documentation of differential effectiveness, cost-effectiveness or other outcomes by age (937 age-extracts, 40.5%); and documentation of age-specific recommendations (859 age-extracts, 37.1%). Public health guidelines considered age most comprehensively. There were clear examples of older-age being considered in both evidence searching and in making recommendations, suggesting that this can be achieved within current processes. Conclusions: we found inconsistencies in how age is considered in NICE guidance and guidelines. More effort may be required to ensure age is consistently considered. Future NICE committees should search for and document evidence of age-related differences in receipt of interventions. Where evidence relating to effectiveness and cost-effectiveness in older populations is available, more explicit age-related recommendations should be made. Where there is a lack of evidence, it should be stated what new research is needed.

Understanding welfare conditionality in the context of a generational habitus: A qualitative study of older citizens in England.

In many welfare states, 'austerity' policies have ignited debates about the fairness and cost-effectiveness of universal welfare benefits, with benefits received by older citizens a particular topic of concern. Empirical studies suggest that conditionality generates problems of access and uptake but, to date, there has been little research on how different conditions of entitlement are understood by older citizens. This study drew on interviews with 29 older citizens from three areas of England to explore how eligibility for and uptake of different kinds of welfare benefits were understood. In interviews, current entitlement was understood in relation to a generational habitus, in which 'our generation' was framed as sharing cohort experiences, and moral orientations to self-reliance, hard work and struggle. Entitlement to some welfare benefits was taken for granted as a reward owed by the state to its citizens for hard-earned lives. State transfers such as pensions, free travel and fuel subsidies were congruent with a nationalised generational habitus, and fostered recognition, self-worth and the sense of a generation as a collective. In contrast, transfers contingent on economic or need-based conditionality were more explicitly framed as 'benefits', and negatively associated with vulnerability and moral contestation. Uptake was therefore often incompatible with their generational habitus. Calls for introducing further conditionality to benefits for older adults are often based on claims that this will increase fairness and equality. Our analysis suggests, however, that introducing conditionality has the potential to promote inequality and foster differentiation and division, within the older population and between generations.