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Germany

2015: Is Europe becoming more dementia friendly?

Development of DFC in the country

In 2007, Aktion Demenz [1]  launched a public campaign in Germany calling for a more dementia friendly society, in particular looking at “how citizens affected by dementia could be approached openly and in a spirit of solidarity within local communities” (Aktion Demenz).  Aktion Demenz together with other relevant organisations in Germany such as Alzheimer Gesellschaft and Demenz Support, have contributed in the last years to raise a  social and less medicalised image of dementia in the country.

In 2008, and funded by the Robert Bosch Stiftung [2] (Robert Bosch Foundation, RBS), Aktion Demenz started and monitored the programme ‘People in the Community Living with Dementia’, which has been implemented three times since then. This programme has provided funding to local projects with a focus on dementia that initiated and implemented community-based activities aimed at supporting people with dementia and enabling their participation in society. The program was monitored and coached by “Aktion Demenz”. Since 2008, 78 projects have been supported by the RBS Foundation. RBS contributed more than EUR 2 million to the overall project - approximately EUR 15,000 per project. The projects’ target groups were the general public, and several local Alzheimer’s Associations were involved. The aim was to raise awareness, involve people with and without dementia, and developing ideas and models of shared responsibility and cooperation that involve all local actors and citizens, to enhance the daily lives of people with dementia and their carers.

Understandings of DFC in the country

According to the Deutsche Alzheimer Gesellschaft, the understanding of DFC in Germany is very similar to the one put forward by the Alzheimer Society of Ireland. They intend to “reconfigure the communities that we all live in and mainstream dementia into everyday life of that community.  The vision is to involve all the stakeholders and members of the community to be dementia friendly”.

In the work developed by Aktion Demenz, they do not intend to provide a final answer to the question of what dementia-friendly communities looks like or how the goal of implementing such communities can be reached. What, in their opinion, is important, is to channel discussions, suggestions, examples, ideas, campaigns and experiences into local projects and ideas, showing that communities that work to face the challenges of dementia work to achieve a better future for all. In their own words:

“No organisation or individual should be allowed to define with authority how dementia-friendly communities should operate and how they should be implemented. Instead, suggestions for possible models arise from discursive agreement between all local actors, including those directly affected by dementia. This, however, requires a shared understanding of the challenges we face, and a new way of 'doing community'. This is the reason why, strictly speaking, there are no dementia-friendly communities yet, but rather communities on their way to becoming dementia-friendly” (Rothe, Kreutzner, and Gronemeyer, 2016).

Whilst there are number of communities in the country that are working to become dementia friendly, there are not available figures about how many communities have, in fact, become dementia friendly.

The programme ‘People in the Community Living with Dementia’ has funded 78 initiatives that are working to make their communities friendly for people with dementia.

Steps to build a DFC in the country

According to the Deutsche Alzheimer Gesellschaft, in Germany there is no official protocol or guidelines as to what are the main steps to build a dementia-friendly community. “Aktion Demenz” offers information and guidance for the development of dementia-friendly communities (www.aktion-demenz.de). The platform emphasizes the relevance of involving and empowering people with dementia. It is stated that a partnership between the government, municipalities, professionals and formal carers, volunteers and all citizens is needed; as this is the only way possible to find new ways of helping people with and without dementia to live well together in a supportive community. The platform:

  • Provides information on the subject "Dementia and municipality" and raises awareness of dementia
  • Provides information on existing local initiatives, projects and activities
  • Promotes the exchange of ideas and the public debate
  • Facilitates the search for common solutions and networking initiatives
  • Promotes the development of local activities, initiatives, projects and ideas.

The fact that a growing number of people with beginning dementia live alone in their own households was the starting point for Deutsche Alzheimer Gesellschaft to set up the project „Living alone with dementia – training courses in communities“(“Allein lebende Demenzkranke – Schulung in der Kommune”).  These people go shopping, get money from the bank, use public transportation and sometimes it comes to irritating situations for them and the people around. In cooperation with partners in different communities training courses were developed and tested.

The project resulted in the handbook “Living alone with dementia. A challenge for communities” (“Allein leben mit Demenz. Herausforderung für Kommunen”). It includes instructional material as well as a DVD with short films. These films show typical situations people with dementia face in supermarkets, banks, with the police, the fire brigade and in sports clubs. It demonstrates that knowledge about dementia and empathy can be helpful to manage critical situations. For further information, please visit: https://www.deutsche-alzheimer.de/ueber-uns/projekte/projekt-allein-lebende-demenzkranke.html

Dementia-friendly symbols

In Germany, there is no symbol for DFCs.

Measuring and monitoring progress

To date, in Germany, the progress of the DFCs in general has not been monitored or evaluated. The program of the RBS was evaluated by Dr. Charlotte Jurk, several of the projects were evaluated locally.

The insights from Aktion Demenz e.V. gained in recent years including the qualitative evaluation from Dr. Charlotte Jurk have been published at the end of 2015: Verena Rothe, Gabriele Kreutzner, Reimer Gronemeyer” Im Leben bleiben - Unterwegs zu Demenz-freundlichen Kommunen”[3]:

“We are constantly growing older. At the same time, there are more and more people aging with dementia, who are merely being »taken care of«. Clearly, we need alternatives to the established procedures. What can we do to create places where we can stay in life – rather than just staying alive? How can we turn the surroundings of people with and without dementia into »places of human warmth«? In Germany, numerous initiatives are on the rise: engaged people from politics, culture, churche and youth work are creatively working towards dementia-friendly communities. The three authors, intimately familiar with the topic, show exploratory movements, obstacles, and first approaches” www.transcript-verlag.de/en/978-3-8376-2996-5/im-leben-bleiben

Some conclusions by Aktion Demenz: “The success of the concept of dementia-friendly communities brings with it many possibilities but also some dangers. It is easily misunderstood, which is why we feel the need to stress once again that we do not see dementia-friendly communities as yet another building block in the expansion of the institutionalised care system in which communal structures are simply another service layer between care homes and families. Nor do we intend them as a rather sly and subtle strategy for relieving the welfare state by outsourcing care services that are no longer affordable to the cost-effective substructures of volunteer work.

The more weight is put on certificates and trainings and the more volunteer work is ‘upgraded’ into a (badly) paid service, the greater the danger that instead of offering simple and practical support to those who need it, all that is happening is the creation of new market demands (a professional carer for every person with dementia). This way, rather than developing a new culture of community, volunteer work is bound into an exclusionary demand for expert professionalism. To make the situation worse, many volunteers actually already rely on their work to secure their livelihoods.(Jurk 2012: S. 39)

In our modern age – an age that is marked by the importance of measurable results, numbers and facts –, it is more important than ever that we see social issues as processes, take the time we need, and try to include others for the long term. Only then will we be able to involve people from areas of life other than our own and prevent organisational blindness through inspiration from the outside. Unfortunately, it is still only rarely recognised how important it is to not only tolerate or try to commission civil activism and engagement, but to actively pursue, support and allow it to develop on its own.

Another important aspect of the initiatives is the effort to try to bring people with and without dementia together in their local communities. This can lead to better mutual understanding and lasting improvements in the lives of people with dementia and their family and friends. An open, sympathetic environment can alleviate the development of dementia as well as its effects, directly and indirectly, and have a positive influence on the community in general. This is one reason why we hope – and we are happy to report that this is happening already – that the funded projects will inspire other communities to develop their own ideas and projects, benefiting from the experience of others.” (Action Dement e.V. – Dementia friendly communities, 012016)

Examples of DFC in the country

Arnsberg

Arnsberg is a town in the Hochsauerland district, in North Rhine-Westphalia which is working towards becoming dementia friendly. Arnsberg has approximately 75.000 inhabitants.

The organisations involved in this initiative are: the municipality, self-help organisations, ambulant services, nursing homes, cultural organisations, schools, kindergartens, civil society organisations, and commercial companies. 

The coordination of the project is funded by City of Arnsberg. The partners share the costs of their common projects. The development of the concept started in 2006, and the initiative started in 2008.

Some of the main actions that have been developed so far (2008-2016) include:

  • “Lern-Werkstadt Demenz“ (“Education workshop in dementia”).
  • Supporting the public debate on dementia on the local level with the aim to “normalize” the topic and to make it easier to talk about it.
  • Building up and extending a network on dementia with partners from civil society and professional services.
  • Establishing a counselling service; continuing education on dementia, etc.
  • Cooperation with schools and kindergartens.
  • There is a “Carnival of generations“ every year.
  • Organization of conferences as for example the German-Japanese symposium “Dementia and solidarity between generations” (2014).
  • The town of Arnsberg has transferred the good experiences from the project-phase (2008-2011) into the city’s long-term strategy papers and is permanently financing a network-coordinator. The development of a dementia friendly Arnsberg is part of the city’s concept “Long and good Life in Arnsberg”.

Ostfildern

Ostfildern is a town in the district of Esslingen in Baden-Württemberg which is working towards becoming dementia friendly since 2007. Ostfildern has approximately 36.000 inhabitants.

The organisations involved in this initiative are Leitstelle für Ältere, Ostfildern (Coordinating office for senior citizens in Ostfildern), and partners from civil and commercial organisations. The initiative is funded by the municipality and the various partners. The concepts of “inclusion” and “sustainability” are at the heart of the projects developed in Ostfildern.

Some of the main actions that have been developed to date include:

  • Campaign “We are neighbours” (2007-2008).  The aim if this campaign was to raise awareness about dementia and to establish networks of support for people with dementia and their families.
  • “First aid courses on dementia” for those who want to help people with dementia (since 2008).
  • Concerts for people with and without dementia (every year since 2008).-
  • “Café forget-me-not” which offers support for people with dementia (since 2009).-
  • Ecumenical “Church service for people with and without dementia” with social meeting afterwards (four times a year since 2009).-
  • Qualification programs for professionals concerning “Music for people with dementia” (since 2011).
  • “Sports and dementia” in cooperation with local sports clubs (since 2013)-
  •  A “Neighborship House” offers day care and apartments for people with dementia in cooperation with more than 100 volunteers (since 2012).

Planned actions include building shared apartments (Wohngemeinschaften) for people with dementia in cooperation with family carers and the community.

Robert Bosch Stiftung

An overview of all the projects supported by the Robert Bosch Stiftung, one of the majot foundations in Germany, can be found at http://www.demenzfreundliche-kommunen.de/projekte.

One example of the projects supported by RBS is the project “Mitten im Leben - trotz Demenz” (“Having a life despite dementia”) in the town of Angermünde. Angermünde, a town in the district of Uckermark in the state of Brandenburg.

The project started with a campaign to fight the stigma of dementia. The campaign aimed to help change the existing negative image of dementia and to promote the idea that people can live well with dementia and enjoy a good quality of life. The project also involved building up a network of stakeholders. This network brings together people with different skills, experiences and perspectives, and can help to raise awareness among the general public about living well with dementia. It is also expected to collaborate with some politicians and with the local government. Activities, that are age-appropriate for children and young children, may also be developed.

[1] Aktion Demenz is a national non-profit initiative in Germany. It aims to improve the lives of people with (and without) dementia, primarily through public dialogue and to raise awareness of the condition. Trying to counteract the medicalisation of dementia by ‘resocialising’ it, Aktion Demenz aims to reduce stigmatisation and bring about social change. It includes people from all areas of society, who are committed to working towards more tolerance for and better inclusion of people with dementia and their families and friends via local projects. Please visit http://www.aktion-demenz.de/ or www.demenzfreundliche-kommunen.de for further information.

[2] The Robert Bosch Stiftung is one of the major German foundations associated with a private company and has managed the philanthropic bequest of company founder Robert Bosch for over 50 years. Please visit http://www.bosch-stiftung.de/content/language1/html/index.asp for further information.

[3] At the time of writing, this publication is only available in German but it is expected that it will be translated and published in English in 2016.

 

 
 

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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