the european foundations’ initiative on dementia (efid) · results of the efid initiatives funded...

The European Foundations’ Initiative on Dementia (EFID)

Results of the projects funded under the Capacity Strengthening Fund (CSF)

Towards a network of practitioners for dementia-friendly communities

(July 2015 – December 2016)

Results of the EFID initiatives funded under the Capacity Strengthening Fund 2015

Rationale

In March 2015, EFID Foundations composed of The Atlantic Philanthropies, the Fondation Médéric Alzheimer, the King Baudouin Foundation, the Robert Bosch Stiftung, the Joseph Rowntree Foundation, the Genio Trust and the Life Changes Trust decided to establish a ring fenced Capacity Strengthening Fund to provide support to local initiatives that are implementing good practice.

The two generations of the EFID awardees and special nominees were invited to propose new initiatives to deepen their work in the communities, through joint projects and go-and-see visits. Go-and-see visits facilitate the exchange of ideas and best practice. Joint projects strengthen the collaboration among organisations and create new partnerships.

Funded initiatives were expected to create synergies among EFID awardees and other organisations, disseminate good practice and strengthen the network of practitioners engaged in Dementia Friendly Communities (DFCs).

The inclusion of people with dementia is the cornerstone of the EFID approach. Therefore the proposals received under the CSF have been assessed by a facilitated group of people with dementia. The group recommended to fund six initiatives for a total budget of €64.000. The selected joint projects and go-and-see visit run between July 2015 and December 2016.

In this document we summarise the results of the initiatives. Overall, the funded organisations enjoyed the experience and benefitted from it. The joint projects and the site visits enriched the portfolio of the awardees’ activities and opened up new horizons that hopefully will be explored in the next years.


Results of the projects and go and see visits

1. Joint project: Out and about with dementia: creating dementia-friendly community, leisure, tourism and family activities in the Pellice Valley, Italy and the city of Kortrijk, Belgium Partners: Rifugio Re Carlo Alberto (EFID awardee), OCMW Kortrijk (EFID awardee), Municipal Council of Luserna San Giovanni, Municipal Council of Torre Pellice Project description The aim of the project was to develop, with people with dementia, more opportunities that are accessible to them and thier cargivers in the community for leisure, travel and a 'normal' community life. Project partners worked with a range of community services and businesses in Val Pellice in Italy and in Kortrijk in Belgium to encourage them to become more dementia-friendly and to develop new services. This was carried out through training, evaluation visits, consultations, formal and informal meetings, pubic events and a holiday exchange, with the participation of people with dementia. An important part of the project was to demonstrate the valuable role people with dementia have in their communities both socially and economically, and to raise awareness and produce information about dementia and dementia friendliness. Results The project achieved results in the following categories: community participation; participation of people with dementia; awareness raising; new services developed or planned. In particular, over 150 lay citizens and more than 70 business and associations were involved in the project. Companies understood the value of providing more dementia-friendly services and spaces. Over 80 people living with dementia and 20 caregivers were involved since the very beginning of the project, demonstrating the importance of the participation of people with dementia in every phase of the project. There was an overwhelming response from social and traditional media to help 'put out there' information about what dementia is and isn't and that there are ways of living well with dementia. The holiday exchange helped to distinguish the project from other awareness raising projects and created a feel good factor that helped the media to talk about dementia in a positive way without undermining the difficulties. A 30-minute documentary film will be available in February 2017. Beside these results, the first 4 dementia friendly hotels were established in Italy (3) and Kortrijk (1) and several sport activities and a dementia-friendly mountain walk to an Alpine Refuge were developed. Finally, the project implemented useful dementia-friendly cultural mediation and translation services for international visitors in the case of hospitalization or other emergencies. Key message Creating opportunities for people with dementia to share their positive and negative experiences of living with dementia has the capacity to help them be and be seen as a resource for their communities and crucially change the hearts and minds of the people who help run them.

2. Joint project: Learning together Partners: EDUCATE (EFID awardee), YoungDementia UK (EFID awardee) Project description People with dementia in EDUCATE have learnt how to raise public awareness about dementia by


‘’When I got my diagnosis I was suicidal. Now I am

part of a new community and it has changed my outlook on life entirely’’

Jeff, who lives with vascular dementia

giving talks and speaking at meetings. The project aims to help people with dementia in other areas to gain awareness raising skills. YoungDementia UK supports people with young onset dementia to live fulfilled lives in ways not understood by traditional services. YDUK and its members would like to share what they have learnt so that people with young onset dementia in other areas benefit. This joint project is a programme of exchanges, workshops and events in Oxford and Stockport to enable the two partner organisations to swap their knowledge and experience. Results EDUCATE and YDUK are committed to the Engagement and Empowerment model, which seeks to provide opportunities for people with dementia to participate as active citizens, and emphasizes both their retained skills and potential for growth. Both partners have become more confident in using this model as the joint project has progressed. The project has been successful in involving a large number of people with dementia. It delivered significant public events enabling people with dementia and their allies to raise the level of cultural awareness among the audiences attending. People with dementia also audited the buildings and systems used so they were as dementia friendly as possible, promoting greater access for others living with dementia and improving the understanding of customer facing staff in the venues used. Key message People with dementia themselves are crucial in co-producing various aspects of dementia friendly communities.

3. Joint project: Dementia friends in action Partners: SKE SIMPLEGMATOS KOURI KSILOURIKOU (EFID awardee), LCEDUCATIONAL LTD, NGO ASTARTI Project description Dementia remains one of the most important challenges for our ageing societies. The CSF helped the organisations involved in the project to deepen and broaden best thinking and practice of dementia friendly communities in Cyprus. The project’s goal is to give individuals, businesses, policy-makers a better understanding of the steps they can take to ensure that all members of the community are engaged and involved, including those living with a diagnosis of dementia. The organisations wish to create an environment where people with dementia and their families could live well and be active participants in the community. Raising awareness and providing information are the key to change. Results The project implemented a range of activities that allowed the consortium to achieve their goal. In particular, an awareness campaign, followed by additional info days, was held in 4 municipalities. A pilot program was implemented in 5 high schools, raising awareness among young people and creating a pool of volunteers. The project partners developed a dementia café and 5 training courses for business, professionals, youngsters and citizens, to recognise the symptoms of dementia. Finally, the project established the “Cyprus Dementia Network”. The organisations interested to join the network were offered the opportunity to learn and


“Social participation is a life elixir for people with dementia and their relatives. I have got

the impression that we are on a good way to develop a

dementia friendly community”. Marita Gerwin, Fachstelle

Zukunft Alter (City of Arnsberg)

exchange in 3 workshops. Key message Dementia-friendly environments are now a reality in Cyprus. The person-centred approach is fundamental to shift the frame from “treatment” to “community care”.

4. Go-and-see visit: Living at home in a DFC Beneficiary: City of Arnsberg - Learning Lab Dementia (EFID awardee) Description A delegation of different partners from Arnsberg’s local dementia network wanted to learn from the good practice of FOTON in Brugge. The key question is how to support people with dementia living at home, and what can new forms of housing solutions offer to Arnsberg’s citizens. This trip has two goals:

1. Exchange knowledge and experience 2. Trigger new ideas on housing projects and support systems.

Thus, new impulses have been gained for the strengthening of the local initiative towards a dementia friendly Arnsberg. Results The long lasting exchange that exists between Foton and Arnsberg continued during the go and see visit. The German delegation was very much inspired by the usage of the logo (the knotted handkerchief), which is not used as a symbol of professionalism or expertise, but as a symbol of solidarity.

Key message The importance of linking the branch of support for people with dementia with the involvement and active participation of the local community. This linkage can improve the existing support system in terms of reach, accessibility and efficiency.

5. Go-and-see visit: Sharing European realities to mobilise change: developing Alzheimer’s strategy, support and care services in Italy and Bulgaria Beneficiary: Foundation Compassion Alzheimer Bulgaria (EFID awardee) Description The project “Sharing European realities to mobilise change” involves a visit to the Rifugio Re Carlo Alberto in Italy by the Foundation Compassion Alzheimer Bulgaria (FCAB) staff, board and council members. The activities involve sharing the perspectives on DFC and best practices in Turin; meetings with staff, volunteers, residents of the Refuge, and it’s public, private and third sector partners. There are similarities in the challenges the project partners encounter in trying to improve the lives of people with dementia. Sharing responses will help provide new solutions and develop Alzheimer’s strategy, support and care services in both Italy and Bulgaria. Results Foundation Compassion Alzheimer Bulgaria (FCAB) and Rifugio Re Carlo Alberto (hereafter Rifugio), exchanged mutual learning from the visits to Torre Pellice (IT) and Varna (BG). FCAB and its


delegation that included policy makers, were impressed by the work done by Rifugio. The go and see visit in Italy was a turning point for the launch of new and so needed services in Bulgaria (Varna) for people with Alzheimer’s and namely – the announcement of the decision of the municipality of Varna to open a day-care centre for people with dementia. The Italian model could be a very good basis for the forthcoming opening of the first day-care centre in Varna. FCAB will transfer the experience in provision of services for the family caregivers (approach and communication). Other important elements are: provide opportunities to remain independent as much as possible; ensuring an ambiance that contributes to the stimulation of cognitive functions. The leading principle is that the day-care centre should adapt towards the visitors’ needs. Key message Involving policy makers into study visits is an effective method to raise awareness and get their commitment to improve/replicate the initiatives at local level.

6. Go-and-see visit: Promote the development of varied actions towards Rennes dementia friendly

Beneficiary: Association Bistrot Mémoire Rennes (EFID awardee) Description Rennes is a quiet city with a strong tradition of voluntary actions and solidarity. The Bistrot Mémoire planned to:

• visit friendly solutions for people with dementia in Brussels and Amsterdam • visit Stockport and Oxfordshire (UK) and learn from the EDUCATE project and Young

Dementia UK • present the organization at the 25th Alzheimer Europe Conference in Ljubljana

Results The go-and-see visits were very enriching and certainly a great source of inspiration for the future actions of Bistrot Mémoire. A delegation from Rennes visited Belgium, Netherlands, Ljubljana and Manchester. At the end of 2016, the theatre workshop for carers opened a new perspective on the way we look at dementia. Key message The implementation of dementia-friendly communities in Anglo-Saxon countries is particularly impressive, combining a collective approach at the national level, a real integration of services and voluntary support and a crucial role for people living with dementia. Bistrot Mémoire tries to replicate the model in Rennes and in France.

the european foundations’ initiative on dementia (efid) · results of the efid initiatives funded...

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