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.


| INTRODUCTION
Growing recognition in recent years of dementia as an urgent global health issue 1 has led to an increase in Dementia Friendly Communities (DFCs). While there are many different kinds of DFCs, they share the common goal of ensuring that people affected by dementia (those living with the condition and their supporters and carers) can continue to be active and valued citizens. 2 Ninety percent of Organisation for Economic Co-operation and Development (OECD) countries support DFC initiatives. 3 In individual countries, efforts to create dementia-friendly environments have been ongoing for some time, such as in Japan, 4 where initiatives can be traced back to at least 2004. In the United Kingdom, 5 it was the Prime Minister's Challenge in 2012 that put DFCs on the agenda. England is one of the few countries that has incorporated the creation of DFCs into policy, with targets for the creation of DFCs and a system of recognition linked to standards. [5][6][7][8][9][10][11] Fundamental to DFCs is the involvement of people living with dementia in all aspects of their organisation and operations. 10,11 A more contested aspect is the term "dementia friendly" itself. While apparently positive and laudable in its intentions, it has been criticised for advocating charitable kindness towards people living with dementia.
What is needed instead, it has been argued, is a rights-based approach that focuses on the removal of socially imposed barriers and on enablement. 12 Calls for recognition of the human rights of people living with dementia have been growing louder in recent years. [13][14][15] There has been growing interest in the concept of DFCs, and a substantial body of research exists. 2 This ranges from studies on what it means to be a citizen with dementia 16,17 to evaluations of communities' activities 18 and evaluations of dementia-sensitive infrastructure such as transport and the design of public and commercial buildings. 19,20 Most published evaluations of DFCs were completed within the first few years of the initiatives having been set up. [21][22][23] With DFCs now supported by national policy, there is a need to know how they are configured and characterised and how they prioritise activities. This paper presents early findings from the National Evaluation of Dementia Friendly Communities in England (the DemCom Study, January 2017 to June 2019), funded by the Department of Health and Social Care.
It provides an overview of DFCs in the country. The research question that informed this work was as follows: What are the characteristics and foci of DFCs in England?
The DemCom Study adopted a broad working definition of DFCs so as to capture the range of possible approaches and encompass groups or organisations that self-identified as DFCs: A Dementia Friendly Community can involve a wide range of people, organisations and geographical areas.
A DFC recognises that a person with dementia is more than their diagnosis, and that everyone has a role to play in supporting their independence and inclusion.
DemCom has drawn on related work on evaluating the impact of the World Health Organization's (WHO) Age-Friendly Cities initiative. 24,25 Together with existing guidance for aspirant DFCs, [9][10][11] this work [26][27][28] has helped to identify the characteristics of DFCs examined in this article.

| Identification and sampling of DFCs
Identification of DFCs and data collection took place between January and June 2017. Records of communities that had been formally recognised as "working towards being a DFC" by the Alzheimer's Society 11,29 were obtained from the Society. Formal recognition entails a community successfully demonstrating its commitment to meeting the seven "foundation criteria" for DFCs and monitoring and reporting on its progress towards them. 9,10 Alzheimer's Society records were complemented by online searches in Google, based on the following search terms: "Dementia Friendly Communit*"; "Dementia Friendly*"; "Dementia Action Alliance"; "Dementia Friends". In addition, a "Google Alert" that generated notifications of the term "dementia friendly" occurring in news articles was in place.
Following initial mapping of all DFCs, a selection (n = 100) were examined in depth. These were purposively sampled to reflect the diversity of DFCs by the following: (a) type-DFCs defined by their location (eg, cities and counties) called "location-based DFCs" and DFCs that are organisations or entities with a specific focus (eg, an airport and a national supermarket chain) summarised as "communities of interest"; (b) geographical distribution across England; and (c) geographical reach/size. Additionally, DFCs were included if the available data indicated characteristics that made them distinctive and offered particular opportunities for learningfor example, an explicit concern with the rights of people living with dementia or attention to particular groups (eg, Black and Minority Ethnic communities). Only "active" DFCs were selected, defined as DFCs where online sources suggested activity in the previous 6 months or whose active status was confirmed in a telephone call. The different steps of the sampling process are outlined in Figure 1.

| Data collection and analysis
A multimethod approach to data collection was used. Online searches of DFC and related websites (eg, local government and voluntary sector)

Key points
• This is the first national overview of Dementia Friendly Communities (DFCs). It was carried out in England as one of the few countries that have incorporated DFCs into policy.
• DFCs are characterised by variation in type, resourcing, and activities.
• Policy endorsement was an important driver for the growth of DFCs across the country.
• An agreed approach to evaluation could support DFCs in how they monitor their progress, involve people living with dementia, and agree on criteria for good practice for DFCs in different contexts and at different stages of development.
were carried out to obtain key information on the 100 sampled DFCs.
Stansfield et al 30 provide a three-stage framework for systematically identifying online information. Initially, Google was selected for the online searches. Next, the following search terms were applied consecutively: "Dementia Action Alliance [name]"; "Dementia Friends [name]." In a third step, this process was stopped once a minimum of four, and up to seven, online data sources for each identified DFC (including DFC website and reports in local media) had been selected from up to four pages of search results. The aim was to identify sufficient online information to complete a data extraction form and gain a comprehensive picture of a DFC. Where gaps remained and contact details for a DFC were available, up to three attempts at a follow-up telephone call to a stakeholder (such as a DFC coordinator) were made to obtain further information.
The data extraction form was based on a preliminary version of an evaluation tool for DFCs being developed as part of DemCom, which identified different thematic areas for which evidence needed to be collected. This had its roots in an evaluation tool developed for Age-Friendly Cities. 26 Thematic areas for data extraction included how a DFC was led and governed, what activities it involved, how people affected by dementia (people living with dementia as well as their carers/supporters) were involved in a DFC, and whether and how a DFC's work was monitored and evaluated ( Figure 2). From these thematic areas, key characteristics of DFCs were distilled (eg, size and resources; see Sections 3.1 to 3.7).
The area of DFC activities was particularly complex. It required close examination that entailed categorising all DFC activities identified by purpose and intended target group (see Section 3.5).
All authors were involved in data extraction. Double extraction was carried out for 17 DFCs to ensure a systematic and reliable approach. Team discussion resolved how ambiguous data were categorised. Coding and analysis were carried out by four members of the research team using MS Excel (version 2016).
This paper is based solely on information available in the public domain. Contacts who were telephoned were alerted to this, and only publicly available documents were accessed. This phase of the study was assessed as not requiring formal ethical review.

| RESULTS
A total of 284 DFCs were identified across England-the majority (n = 203) from Alzheimer's Society records of communities formally recognised as working towards being a DFC, and 81 from additional sources. Table 1 presents an overview of the characteristics of the 284 DFCs identified and how they are reflected in the 100 sampled DFCs.

| Online presence of DFCs
The online presence of the 100 sampled DFCs was variable, as were the quality and range of data that could be extracted for them. For some DFCs, fewer than four online sources were available, with available sources ranging from one to 10. Insufficient online information to populate the data extraction sheet resulted in attempted telephone contact with 22 DFCs. This was successful in 13 DFCs, for which additional information was obtained.

| Types of DFCs, geographical reach, and size of population served
Of the 100 sampled DFCs, 72 were location based, and 28 were communities of interest. It is a target for 2020 that over 50% of the English population will be living in a DFC. 7 The number of people living in the location-based DFCs ranged from 850 in a small parish to 5 300 000 in a county. The majority of the location-based DFCs covered comparatively large urban areas-more than a third (n = 27) were towns, and a quarter (n = 18) were cities. It is worth noting that there were cases where DFCs overlapped, for example, where a town with DFC status was located within a county DFC.
The 28 communities of interest included housing associations, churches, airports, banks, a supermarket chain, a police constabulary, a fire department, a university, support groups, a dental surgery, and associations with a focus on cultural activities. Precise figures for the population they reached could not be identified. Many were located within location-based DFCs but appeared to be self-regulating in their organisation.

| Origins, organisation, and ways of working
While DFCs have policy support, their characteristics-how they are organised, their priorities, and the ways in which they work-reflect by whom they have been led and how long they have been in place.

| Resources
DFCs had varying-and often multiple-sources of income. For the majority of the DFCs studied (n = 54), it was unclear how their activities were supported or if there was long-term funding. Where it was reported, funds available to DFCs ranged from £200 from a fundraising event to £1 million of government funding for improvements to care homes badged as making the borough more dementia friendly. Almost a third of DFCs (n = 29) had received grants, commonly from their local authority, but also from CCGs and voluntary sector organisations. Larger grants were funding improvements to infrastructure. One city council, for example, had allocated £250 000 to making customer facing council buildings dementia friendly. Fundraising and/or donations were further sources of income identified in a substantial number of cases (n = 15).
Almost half of the sampled DFCs (n = 48) reported access to salaried staff with support from local government, health care commissioners, charities, and local partnerships. It was unclear whether these roles had an exclusive DFC focus or whether staff were employed to deliver on specific projects (eg, promoting dementiafriendly businesses and transport). In 35 DFCs, more than one  Three DFCs reported in-kind support for dementia-related activities, including free and subsidised use of facilities such as meeting rooms, and administrative support from a charity.

| Work on dementia-focus and activities
There is a clear policy imperative for DFCs to address the stigma of living with dementia. 32 Despite policy directives to promote the rights of people living with dementia as citizens and to challenge environments and attitudes that disable and stigmatise them, 13,14 only two DFCs made explicit reference to a rights-based approach informing their work.

| Involvement of people affected by dementia
The involvement of people living with dementia and their supporters and carers in the setting up, running, and monitoring of DFCs indicates their recognition as experts by experience or active agents able to direct, contribute, and participate. 17,36 There was evidence of involve-

| Monitoring and evaluation
In a third of the DFCs studied (n = 33), formal monitoring and evaluation were mentioned, defined as efforts to assess performance and/or The main emphasis of the reviewed DFCs was on awareness raising. There was evidence of the ongoing involvement of people living with dementia in DFCs in advisory, operational, and strategic capacities. However, the centrality of citizen involvement was not as clearly articulated as in the literature. 10,11,[39][40][41][42][43][44]  The findings suggest that access to services, and concern with the rights of people living with dementia, were not the starting points for most DFCs. This implies a need to observe further how DFCs are responding to growing calls for recognition of the rights of people living with dementia to identify if action is required. A focus on awareness raising arguably signalled that most DFCs were concentrating on building structures of support and community responsiveness. Evidence of tangible progress on these issues, however, was difficult to find. A few DFCs also offered dementia-specific services. These, some would argue, could have the unintended consequence of further separating people living with dementia from their community. 15 While policy support and a system for formal recognition of DFC status have provided an impetus for DFCs to be set up and/or start their activities in England, they have not led to a consistent national approach.
This work and the related review of how DFCs have developed internationally 47 demonstrate the importance of an evaluation framework that enables a nascent DFC to identify from the outset relevant progress and impact indicators and a plan for measuring these.
The research has limitations. It provides a snapshot of DFCs that is constrained by the availability of online data, specifically where no follow-up telephone calls were made. There is a risk of relevant information being underreported. For example, the role of volunteers or of in-kind support in the DFCs may be greater than the findings suggest.
There is a potential selection bias in that the 100 DFCs were purposively selected, although the consistency of their characteristics would suggest they are not atypical. Online resources are only as useful as they are up-to-date. As the means by which people affected by dementia can locate information and support, they are a proxy measure of the visibility and accessibility of a DFC. The fact that 26 DFCs of the original 284 DFCs did not appear to be active is worth noting.

| CONCLUSION
The

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
The DemCom study is funded by the National Institute for Health