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United Kingdom

2015: Is Europe becoming more dementia friendly?

UNITED KINGDOM

England, Northern Ireland and Wales

England

Development of the DFC movement in the country

In the UK (England), the Prime Minister’s Challenge on Dementia (2012) committed to make communities in England more dementia friendly. The initial ambition was to have 20 communities in England, signed up to become dementia friendly by March 2015 but with a surge in demand and successful development across the UK we had 98 communities signed up at the end of the original challenge (2012).

Now a key aspiration is to see further development over the next 5 years with the ambition by 2020 stated as “over half of people living in areas that have been recognised as dementia-friendly communities, according to the guidance developed by Alzheimer’s Society working with the British Standards Institute. Each area should be working towards the highest level of achievement under these standards, with a clear national recognition process to reward their progress when they achieve this” (Prime Minister’s Challenge on Dementia 2020).

According to the UK Alzheimer’s Society’s five year strategy “Delivering on Dementia” a major strategic priority for the organisation will be working to create dementia-friendly communities across England, Wales and Northern Ireland. The Society’s role in leading this work was announced in 2012 as part of the Prime Minister’s Challenge on Dementia. The Society is working in partnership with the Dementia Action Alliance (DAA) [2] to meet this ambition. In Northern Ireland, the Dementia-Friendly Communities programme is working in partnership with Health and Social Care Trusts and local councils on Dementia-Friendly Community Steering Groups. In England, the development of DFCs is a collaborative effort of Alzheimer’s Society and the Local Dementia Action Alliance network.

Understandings of the DFC

A dementia-friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.

According to the recently published “Code of practice for the recognition of dementia-friendly communities in England” (PAS, 2015) a dementia-friendly community can be described as a “geographic area where people with dementia are understood, respected and supported, and confident they can contribute to community life. In a dementia-friendly community people are aware of and understand dementia, and people with dementia feel included and involved, and have choice and control over their day-to-day lives”

There are over 140 communities currently registered for the Alzheimer’s Society recognition process and over 214 Local Dementia Action Alliances established. There may be other communities working to become dementia friendly in the country, these numbers mentioned about are the communities that have signed for the Alzheimer’s Society recognition process. For further details, please visit www.alzheimers.org.uk

Steps to build a DFC in the country

In the UK, the Alzheimer’s Society has developed a national recognition process to reward and recognize communities working towards becoming dementia friendly. By registering for the process, the community commits tomeeting the foundation criteria for a dementia-friendly community and focusing their work around the areas for action outlined by the BSI Code of practice for dementia-friendly communities.

This Publicly Available Specification (PAS):“Code of practice for the recognition of dementia-friendly communities in England” was published in 2015 by the British Standards Institution working in partnership with Alzheimer’s Society and with the expertise of a cross sector focus group and involvement of people affected by dementia. This PAS provides recommendations for those involved in developing a dementia-friendly community, what areas of a community to consider and what changes to expect as a result. People with dementia and carers are an integral part of each stage of the process. Main aspects addressed in the PAS are:

  • how to develop a dementia-friendly community by engaging community stakeholders;
  • areas for action within the community that are meaningful to people with dementia;
  • opportunities for promotion, information sharing and awareness raising, during the development process, and as major accomplishments are completed;
  • what to expect as a result of developing a dementia-friendly community.

A community that registers for the recognition process is committing to taking each of the areas for action below either one per year or a number per year and interpreting them from a local perspective to fit the size, type, stage of progression and resource, and describe the actions they intend to take.

  • arts, culture, leisure, and recreation
  • businesses and shops;
  • children, young people and students;
  • community, voluntary, faith groups and
  • organizations;
  • emergency services;
  • health and social care;
  • housing; and
  • transport

They are also expected to use the foundation criteria (which were established in line with direct feedback from people with dementia on what they believe is important in creating a dementia-friendly community.) These include:

(1) Make sure that there is a local structure in place to maintain a sustainable dementia-friendly community;

(2) Identify a person or people to take responsibility for driving forward the work to support the community to become dementia friendly and ensure that individuals, organisations and businesses are meeting their stated commitments;

(3) Have a plan to raise awareness about dementia in key organisations and businesses within the community that support people with dementia;

(4) Develop a strong voice for people with dementia living in the community; 

(5) Raise the profile of the work to increase reach and awareness to different groups in the community,

(6) Focus on a number of key areas that have been identified locally

(7) Have in place a plan or system to update the progress of the community after six months and one year.

They are issued with a symbol which they can give to organizations and businesses in their community that wish to be part of the dementia-friendly communities’ initiative (British Standards Institution, 2015: 7) and are expected to complete regular reporting on their progress and activity

In geographic areas of England, where other symbols are used to support and promote dementia awareness, these symbols may sit alongside the ‘working to become dementia-friendly’ symbol, thereby contributing to overall efforts to create greater dementia awareness and therefore better support and understanding for people with dementia (PAS, 2015).

Work is now going on which is looking at the most effective ways to recognise all communities within a geographic location and allowing for communities such as universities, faith groups and others to be recognised as a community within the geographical location that they occupy.

Dementia-friendly symbols

The symbol is trademarked by Alzheimer’s Society and to use it, the community and organisations must comply with the terms of use. Alzheimer’s Society retains the right to withdraw that permission if it is felt that the conditions of use have been breached.

Measuring and monitoring progress

In the UK (England, Wales, NI), tangible progress is considered as an important aspect of taking part in the recognition process. Communities registering for the Alzheimer’s Society recognition process are required to submit an application and once accepted will be required to report regularly on their proposed plans. This will include reporting back on the specific areas for action they chose to focus on for the year and at the end of the annual term will prompt an annual review which looks to gather feedback to improve the process and develop the system and to measure progress and success against original targets set for themselves. Local Dementia Action Alliance members similarly have to submit an action plan which they update in accordance with as and when they make progress on their objectives

According to the PAS (2015) the process of developing, maintaining and sustaining a dementia-friendly community should be on-going.  It is expected that users of the PAS will make progress over time in the 8 areas for action, plus other areas that they might identify. To determine their success, communities working to become dementia friendly are encouraged to ask the members of the stakeholder group, including people with dementia, the following questions:

  • Are people with dementia in your community understood, respected and supported, and confident they can contribute to community life?
  • Do they feel included and involved, and have choice and control over their day-to-day lives?

Examples of DFC in the country

Information about the areas and communities that are working to become dementia friendly can be found in the DAA webpage.

Northern Ireland

In Northern Ireland the following towns/cities are working towards becoming Dementia Friendly: Coleraine; Ballymoney; Derry/Londonderry; Strabane; Newry; Belfast (Shankill area) and Belfast city is becoming an Age-friendly city. These are all listed on Alzheimer Society recognition process and NI specific guidelines have been developed. All Alzheimer’s Society DFC recognition processes apply to NI and are to BSI standards

Wales

The Welsh Government launched ‘National Dementia Vision for Wales. Dementia Supportive Communities’ on 16th February 2011. The stated objective of the Vision is “local improvements from the grass roots up will build a network of local dementia supportive communities that will over time create a national dementia supportive community”.

Alzheimer’s Society started working on creating and supporting Dementia Friendly Communities in 2013. Since then nine communities have received Alzheimer’s Society Working to Become Dementia Friendly recognition – Brecon, Swansea, Newport, Tredegar, Usk, Raglan, Caerphilly, Rhymney, and Pontypool.  At least six further communities will register for the recognition process in the next three months and a further ten are also in development.

The Ageing Well in Wales Programme was formally launched in October 2014 as a five year partnership of national and local government and major public and third sector agencies in Wales. The Programme is hosted and chaired by the Older People’s Commissioner for Wales. The first programme of its kind in the UK, the Ageing Well in Wales Programme contributes to and complements the Welsh Government’s Strategy for Older People (Phase 3) 2013-2023. One of the five strands of the programme is Dementia Supportive Communities. Older People’s Commissioner’s Office made a successful bid for Joseph Roundtree Foundation funding to support the meetings of the National Dementia Supportive Community Network and ‘undertake activities to further support the development of DSC’. This will include commissioning electronic compendium of best practice across Wales to provide measurable national baseline.

Scotland

Understandings of the concept DFC in the country

In Scotland, there is no single agreed definition of DFC, but examples include:

  • A dementia friendly community is composed of the whole community (e.g. shop assistants, public service workers, religious groups, businesses, police, transport and community leaders) who are committed to work together and help people with dementia to remain a part of their community and not become apart from it. 
  • This involves learning about dementia and doing very simple and practical things that can make an enormous difference (Dementia Friendly Motherwell).
  • A dementia friendly community is a city, town or neighborhood where people with dementia are understood, respected and supported, and confident they can be part of community life.
  • In a dementia-friendly community people will understand dementia. People with dementia and their families will feel included and involved, and have choice and control over their lives (Edinburgh City Council).
  • A Dementia Friendly Community is one that recognises and embraces the challenges that a life with dementia presents to both people with dementia and their carers, enabling them to live life to its full potential (East Sutherland).

Alzheimer Scotland, the Dementia Services Development Centre at the Univesity of Stirling, and the Life Changes Trust (which is funding several projects) have greatly influenced the development of DFC in Scotland.  The Scottish Government has also noted as a key outcome for the current national dementia strategy the importance dementia-enabled and dementia-friendly local communities that contribute to greater awareness of dementia and reduce stigma.

Some examples of communities that are aspiring/working towards becoming dementia friendly, include:

  • Regions: East Lothian; Inverclyde; East Dunbartonshire; East Sutherland (part of Highland Council area); Orkney; Shetland; Dumfries & Galloway; Western Isles; West Dunbartonshire
  • Towns: Dundee, Edinburgh; Stirling; Motherwell; Bathgate; Bishopbriggs; Dunbar; Musselburgh, Haddington, Tranent, North Berwick, Helensburgh, Inverness
  • Villages: Leslie (Fife); Kirriemuir (Angus)
  • Neighborhoods: Portobello, Cramond, Pentlands (Juniper Green, Currie and Balerno) – all in Edinburgh
  • Other organisations: University of the West of Scotland; In partnership with The Church of Scotland Ministries Council, CrossReach is working to support church congregations as they explore ways of becoming ‘dementia friendly’; Deaf Connections, a voluntary organisation based in Glasgow delivering specialist services to deaf people across Scotland, is setting up a dementia friendly deaf community.

Steps to build a DFC in the country

No specific criteria for building a DFC exist, but common to this activity is the need to involve people with dementia. Alzheimer Scotland has provided various tools on its website which is willing to share with other organisations on request such as hints and tips for businesses; an environmental hints and tips poster and an environmental auditing tool.  Alzheimer Scotland has published a report on the development of dementia-friendly Motherwell, which other organisations can use to help them kick-start their own initiatives.

In 2015, the British Standards Institution published a Publicly Available Specification – Code of practice for the recognition of dementia-friendly communities.  PAS 1365:2015-06-29. It provides recommendations for developing, promoting and measuring the process and some key determinants of changes to expect.  Describes what a dementia-friendly community is, who should be involved and some priority areas to get started.

Dementia-friendly symbols

There is no single symbol or logo in use.  Alzheimer Scotland has developed a logo and a partnership logo for organisations and groups working towards becoming dementia-friendly – this is made available to organisations with whom we are working directly.  But other symbols and logos are in use in various localities.

Measuring and monitoring progress

There is no agreed methodology in Scotland for measuring progress.  In Motherwell, the project team used “mystery shoppers” in the 9-12 month period after the launch of the project.  This involved face to face scenarios and telephone contact. 

Organisations signing up to the Motherwell project produced an action plan which can also be monitored for progress.

Examples of DFC in the country

Dementia-friendly Motherwell (North Lanarkshire)

Organisations involved: Alzheimer Scotland; NHS Lanarkshire; North Lothian Council

Funding: One of the eight key actions outlined in Scotland’s first national dementia strategy was to support three partnership areas as Dementia Demonstrator Sites to test innovative ways of supporting and caring for people living with dementia, using a whole systems approach. The North Lanarkshire Council and NHS Lanarkshire partnership was chosen as one of the three sites. Following an extensive consultation exercise with people living with dementia, family members, carers and staff from partner agencies, North Lanarkshire Dementia Demonstrator Site decided to test out a dementia friendly approach in the community.  Since the initial investment in the Demonstrator site, the project has received funding via Reshaping Care for Older People (a Scottish Government funded scheme) and a grant award from European Foundations’ Initiative on Dementia (EFID). This grant is being used to support further local dementia friendly community developments with black and minority ethnic (BME) and faith communities.

Timeframe:  Started in 2012 and is ongoing.

Main actions so far:Following the consultation exercise mentioned above, the working group prioritised efforts in Motherwell Town Centre because it has a wide range of shops, businesses, organisations, faith communities and forms of transport - all within a well-defined and fairly compact area.  A marketing strategy was developed to persuade organisations to come on board and an event arranged to which businesses and organisations were invited.  This event identified a core group of organisations with whom the project team worked.  The working group devised a tool kit which would take the staff from the shops and businesses and the team through measured development stages towards ‘dementia friendly community’ status.  The toolkit included:

  • a ‘Commitment’ letter
  • a basic Dementia Awareness presentation
  • Hints and Tips for Shops and Businesses fold out leaflet
  • carrying out an Environmental Audit
  • an Action Plan
  • a Certificate of Achievement
  • a Dementia-Friendly award window or door sticker
  • promotional advertising
  • business advantage recognition.

The next phase involved working with the local health centre to consider how staff could better support the person with dementia. People with dementia had told the team how important their GP and health centre were to them.  Awareness sessions were delivered, an environmental audit carried out and recommendations delivered.

A first anniversary event was held in September 2013 to recognise the commitment from the 20 pilot groups, businesses and organisations.  Each business was given a Dementia-Friendly Community sticker to display in their shop or office window as well as a Certificate of Achievement.

Planned actions:In 2013, a new team was recruited to take the work forward in Motherwell and also across the remaining five town centres in North Lanarkshire.  This new team has a full time focus to target shops, businesses, organisations and existing community groups and are able to roll out the programme across the county.

For more information, please see:

http://www.alzscot.org/assets/0001/4677/Dementia_Everyone_27s_Business.pdf

Dementia Friendly East Lothian (DFEL)

Organisations involved:this initiative is a collaborative effort of local residents, carers, volunteers, paid health and local authority staff from a range of departments, local businesses and social enterprises, all people with some experience of dementia.  There are now six communities in East Lothian actively engaged in becoming dementia friendly, with local community people and organisations taking the lead.

Funding: Scottish Community Development Centre provided funding for a learning event in Nov 2014.  It is unknown if any other funding has been provided, but DFEL recognises that there is a substantial amount of resource within the community to support and take forward dementia-friendly work. Schools, libraries, churches, volunteers from day centres, community groups and individuals all give freely of their time.  Part of their forward planning is to identify funding opportunities to invest in going work.

Timeframe:  Ongoing

Main aims and actions: DFEL aims to support people and communities:

  • raise awareness and understanding of dementia and its impact on people and their families and carers;
  • provide a forum and impetus for community led discussions about how we collectively support people with dementia and what more we can do;
  • develop a community response to dementia, where people living with dementia and those that support them inform local decisions that impact on people with dementia and the services they receive.

DFEL spent 6 months opening conversations in the community, talking to people and encouraging others to join in, with great support from the local press. The organising group designed and ran 2 community events in April 2014 where 100 people and suggested good places to go if you have dementia and what people would like to see changed.  In November 2014 a learning event gave an opportunity for a wide range of people from across East Lothian to share stories and experiences and identify priorities to take forward in our action planning for 2015 and beyond.

Planned actions:The group continues to support people to develop their own dementia-friendly activities and produce regular information briefings on what’s happening around East Lothian.  The group’s main foci going forward are:

  •  Awareness raising and producing and disseminating information materials in accessible formats or widening access to existing information about dementia
  • Training. DFEL has drafted a training strategy and is pressing for greater investment in dementia training for health and social care staff and also for people working and living in the community such as shop assistants and staff in local businesses.
  • Care service providers and planners need to understand and consider the role that community resources and organisations can play in providing effective care at all stages of dementia, supporting people with dementia to live meaningful independent lives in the community for as long as they wish to do so.  DFEL plans to develop case studies to illustrate this and to use every opportunity to raise the profile of dementia and Increase opportunities for people with dementia to have more say and influence on the decisions that matter to them.
  • Talking about dementia is key to addressing stigma and breaking down barriers. There is a need to forge links between professionals and the community as professionals need to talk with communities, not just amongst themselves. The other important aspect is about people involved in service provision talking to each other and sharing ideas and information about what they do e.g. between care homes and day centres.  One suggestion is to consider “twinning” dementia friendly communities to share experiences.  Communities need to be given opportunities to meet and talk and DFEL will explore various options for doing so (annual event, regular forums/meetings, online chat, etc) but also provide a forum for people with dementia to influence decisions.
  • Structure.  The group is to consider what form of structure to adopt to take their work forward which might be any or none of the following: loose network, formal collaborative, social enterprise, federal structure, etc.

For more information see http://dfel.org.uk/

[1] Genio Limited is an Irish registered company. Genio works to bring Government and philanthropic funders together to develop better ways to support disadvantaged people to live full lives in their communities.

[2] The Dementia Action Alliance brings together organisations across England committed to transforming the lives of people with dementia and their carers. To become a member, organisations sign up to the National Dementia Declaration for England and submit an Action Plan setting out how they are delivering the outcomes described in the Declaration.  Local Dementia Action Alliances (DAA) bring together regional and local members to improve the lives of people with dementia in their area. They can be established at any level (e.g. village, city, county, region) and can overlap geographically. Please visit http://www.dementiaaction.org.uk/ for further information.

 

 
 

Last Updated: Monday 18 July 2016

 

 
  • Acknowledgements

    This Yearbook received funding under an operating grant from the European Union’s Health Programme (2014–2020)
  • European Union
 
 

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