Evidence Review Of Dementia Friendly Communities

European Union Joint Action On Dementia

17th August 2017

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Berlin Oct 2017

Conference 

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Executive Summary

Background

This report presents the findings of an evidence review conducted by Imogen Blood & Associates in partnership with Innovations in Dementia to inform Workpackage 7 of the EU Joint Action on Dementia, which is being led by the English Government (Department of Health). The review aimed to:

  • Identify best practice examples in relation to the development of Dementia Friendly Communities (DFCs);

  • provide a definition of DFCs,

  • Identify the components of an effective DFC: arriving at a model demonstrating the key success factors of a DFC, synthesizing data from interviews, group discussions, online survey feedback, and key components of other existing models; and

  • Develop a set of indicators to test the success of the forthcoming pilots within this Workpackage.

 

The report is based on the following primary and secondary evidence:

  • 82 reports and articles identified through a systematic search for international published and ‘grey’ literature;

  • Three group discussions with people with dementia, including the European Working Group of People with Dementia and two groups within the Dementia Engagement and Empowerment Project network in England;

  • 20 interviews with 25 participants with people involved in DFCs from a total of 10 countries across the EU, including two visits to DFC projects in the UK.

  • An online survey, sent out to EU dementia leads and contacts, to which 57 responses were received.

 

The report is structured around the ‘four cornerstones’ model, which has been used in the evaluation of several DFC initiatives in the UK. The four ‘cornerstones’ are: People, Place, Networks and Resources.

 

Definition

There are a number of contests in relation to the concept of a ‘Dementia Friendly Community’ and each of its component terms. Various existing definitions have been reviewed within this study and feedback gathered on them via the online survey. Based on this, the team proposes the following definition:

 

In a ‘Dementia Friendly Community’, people with dementia are included and respected. Citizens, organisations and businesses work together to remove the barriers which stop people with dementia and their supporters from participating in community life.

 

DFCs are an ongoing process of learning and culture change, rather than a state. The activities and detailed structure of DFCs need to be defined locally and informed by local residents who are living with dementia and their care-givers.

 

 

People

This section demonstrates that the awareness and acceptance of other people is a key enabler of a DFC. The review has identified a number of barriers which people with dementia and their supporters encounter in their social relationships and day-to-day encounters with other people.

 

DFCs may include various activities aimed at changing people’s attitudes and behaviours towards people with dementia, including:

  • Awareness raising – through awareness raising or more formal training sessions, use of media, and intergenerational work;

  • Opportunities for people with dementia and their carers to make a contribution, through voluntary work, including but not limited to providing peer support;

  • One-to-one support to people with dementia to help them to access mainstream community life.

 

Based on the evidence reviewed, the authors recommend that these activities:

  • Involve people with lived experience in developing and delivering awareness raising activities and products;

  • Focus on practical adjustments and communication skills;

  • Are made specific to the roles of people working in different settings, wherever possible; and

  • Create and emphasise the importance of opportunities for people with dementia to participate in and contribute to mainstream community life (i.e. not just in separate, specialist activities).

 

Place

Asserting the rights of people with dementia to access ‘everyday’ public spaces should be a core value of DFCs. People with dementia and their supporters identify a range of barriers to accessing indoor and outdoor public spaces, including: poor signage, inaccessible public transport, lack of toilets, complicated layouts, disorientating flooring and complex information and processes.

 

The evidence suggests that effective DFC initiatives in relation to place:

  • Involve people with dementia and their carers in auditing the accessibility of places, information and systems;

  • Train staff in the ‘public realm’ – transport workers, police, staff at public venues and customer-facing businesses;

  • Work to facilitate way-finding and reduce sensory overload;

  • Create safe spaces for people with dementia and their carers to meet and mix, but also support the integration of people with dementia into mainstream clubs, organisations and services.

 

Networks

In order to establish an effective DFC, the evidence suggests it is important to:

  • Establish a broad network, including partners from a range of businesses and services (i.e. not just health and social care), who can share responsibility for different work streams and actions. Ensure general health services (i.e. not just those with a dementia specialism) are engaged;

  • Consider the size of the area: DFC initiatives seem to be most effective when they focus on relatively small communities, though local action can be coordinated strategically at a city or regional level;

  • Face-to-face outreach and personal networking is an effective way of engaging shops and businesses but it can be very time-consuming and is more powerful where there is a personal connection to dementia and/or people with dementia and their supporters are directly involved;

  • A multi-media approach, which might include local TV, radio and newspapers, leaflets, posters, public meetings and personal networking, seems to be most effective;

  • Ensure the voices of diverse people with dementia and their carers are heard within this network or alliance. There are several different ways of doing this, including:

    • Making the alliance or network meetings and decision-making processes accessible to people with dementia;

    • Supporting individuals to attend or feed in their views outside of meetings;

    • Developing a parallel advisory group of people with dementia which feeds into the alliance in a structured way.

  • Recognise that people with dementia may need support and education if they are to participate meaningfully and if diverse voices (especially in relation to the stage of the condition and socio-economic status) are to be heard.

 

Resources

  • DFCs receive a huge range of financial resources: some ‘grassroots’ efforts run entirely on voluntary effort; others receive funding from government/ national charities

  • Time, energy and leadership are the key resources, though the input of people with dementia requires some funding if it is to be effective and sustainable;

  • In some countries, a national charity (sometimes with government funding) is supporting a network of DFCs, providing them with: publicity and awareness-raising materials, branding, guidance, mechanisms for sharing learning, awards ceremonies, etc.

  • Some DFC initiatives have been evaluated, however barriers include: resources (including the capacity of those at grassroots level to collect monitoring data) and the methodological challenges related to measuring culture and system change.

  • Key factors promoting the sustainability of DFCs include: a broad and strong alliance, structures to build the capacity of groups of people with dementia, and the ‘mainstreaming’ of initiatives into day-to-day business by emphasising legal rights and benefits to businesses and by embedding them into wider strategies and training programmes.

 

 

 

Proposed model and indicators

Based on the evidence reviewed, the team proposes a model which summarises the structure, processes, values, and types of activities of an effective DFC. This is presented in the diagram overleaf.

 

The evidence gathered for this review suggests that sustainability is best promoted where DFCs:

 

  • Are based on a broad alliance, which includes people with dementia and in which responsibility and leadership is shared;

  • Activities are mainstreamed into local plans, strategies and training initiatives;

  • There is a long term commitment to this agenda, including political commitment; not a belief that a DFC is something which can be quickly achieved;

  • Evidence is gathered to build a ‘business case’ for activities;

  • Opportunities to learn and share experiences from other projects and nations are maximised; and

  • The focus is on bringing the Dementia Friendliness agenda in line with the disability rights agenda.

 

A framework for the development of indicators is proposed, which sets out broad measures for inputs (under the headings of Networks and Resources) and outputs, outcomes and impact (under the headings of People and Place). 

 

Benefits

Perceived benefits and outcomes of an effective DFC, drawn from the analysis of this report, have been extracted and classified as qualitative or quantitative. These benefits will be tracked and monitored in the pilot stage of the EU Joint Action Workpackage.

Recommendations

Based on the evidence reviewed for this project and in relation to the development of the pilot stage of the EU Joint Action Workpackage, the research team recommends:

 

  • That the pilots follow, test and refine the model proposed;

  • That the pilots ensure the input of people with dementia throughout and maintain their focus on the value base outlined within the model: these should form key selection criteria and projects should be asked regularly to demonstrate how they are meeting these criteria during the funding period;

  • For the tested toolkit to be most amenable to diffusion and successful adoption throughout EU28, the pilot sites should cover both large and small populations, be set in a mix of urban and rural settings and be spread across a number of countries with different cultures, languages, economic circumstances and health and social care systems. The pilot sites should also constitute a mix of fledgling and more mature dementia friendly communities. This should help to overcome some of the limitations of this review, in the sense that evidence has been drawn from more mature DFCs, typically from Northern European Countries. It is understood that the current proposed selection of pilots looks to address this by exploring pilot sites in Greece (with a more rural focus), Bulgaria (a fledgling DFC) and Italy.  

  • That projects are required at the start of the funding period to develop an evaluation framework which sets out a Theory of Change for their initiative (which problems they plan to tackle and how) and identifies relevant indicators and a plan for measuring these.

  • That Work Package 7 members work to synergise the model proposed in this report with the Dementia Friendly Initiatives framework and toolkit being developed by the WHO, to arrive at a toolkit that maximises evidence drawn from both, and gives a consistent picture of best practice. Employing this synergised toolkit would accelerate progress and timescales as expertise on specifications and testing, developed through the WHO activity, could be capitalised upon in the pilot stage.  

 

The review identified a significant number of evaluations which are in process, suggesting that a follow-up evidence review might usefully be conducted in approximately two years’ time.

 

There is a separate technical report of the methodology and sources for the review.

The model for an effective DFC is provided in the diagram below:

DFC Model

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