Lieselotte (Lilo) Klotz, member of the EWGPWD, writes about her involvement in the 1st Annual Conference of the State Department for Dementia in Mecklenburg-Vorpommern, Germany

26/06/2023

Mecklenburg-Vorpommern (M-V), my home since 2020, is a region with a lot of culture, charm, and nature, located directly on the Baltic Sea in Germany and home to around 1.7 million people. Between Schwerin and Hamburg lies the UNESCO Biosphere Reserve Schaalsee with its lakes, forests, and numerous cultural landscapes. The old residential cities of Ludwigslust and Schwerin attract tourists from all over the world with their historic buildings. Districts and municipalities are overwhelmed with the needs of older people and people with dementia, due to demographic change, an ageing society, supply gaps, lack of care places, excessive costs in care, hyper-individualisation, disappearance of classic family structures, bleeding out of informal care in families, overburdened communities in the sense of a welfare care society, and governing administrations which are not familiar with the issues. This also applies to M-V. At the end of 2021, around 1.8 million people with dementia (65+) lived in Germany; in 2050 there will be 2.4 to 2.8 million. I am one of around 32,000 people affected (with an unreported figure of around 2%) in my region, with a current population of around 1.6 million. But M-V faces the problems and moves on! As of the start of 2023, M-V has a State Department for Dementia, which is sponsored by the German Alzheimer Society Landesverband M-V e. V. Self-help dementia (DAlzG LV M-V) and is funded by the Ministry of Social Affairs, Health and Sport M-V. This makes it the first and currently the only federal state to have a State Department for Dementia, which - in contrast to the specialist departments of other federal states - sees itself as a special strategic interface between implementation processes within the framework of the national dementia strategy and the stakeholders, municipalities and districts.

The first Annual Conference of the State Department for Dementia M-V took place on 12 May 2023 under the motto “We. Together. Living actively with dementia - for a dementia-friendly society" in Schwerin". Numerous participants from municipalities, welfare associations, senior citizens' councils, but also from research and the medical and nursing sector accepted the invitation. Throughout the conference, the multiple facets of caring communities were considered. At this kick-off event, I had the honour of giving a speech and also taking part in a panel discussion. My speech, which took a critical look at the system, was titled “Dementia-friendly community from the perspective of an affected person?” As a person with early dementia, I reported very critically that I unfortunately do not live in a dementia-friendly community and gave an insight into my challenging everyday life. "We people with dementia are grateful and happy when we belong, are allowed to participate and are allowed to share aspects of our everyday reality with other unaffected people." Unfortunately, it is often not possible for us to participate. Stigmatisation, loneliness, lack of care management, excessive demand and a lack of specialist knowledge on the subject of dementia among doctors and in clinics tend to be the norm. This is where the quality and the professional and content-related framework for action by the employees of State Department for Dementia M-V come into play.

The State Department for Dementia M-V and the DAlzG LV M-V draw on extensive experience and knowledge as well as tried and tested methods, instruments, and activities to support people with dementia and their relatives and provide some respite. "We don't have a lack of ideas; we have a lack of implementation!" comments Daniel Lichy, project manager at State Department for Dementia M-V. The bottom line is that the municipalities, more than before, should have a special responsibility in designing dementia-friendly structures. This is vital in providing the basic conditions for life, the opportunities for self-fulfilment and quality of life for all. Of course, like so many people affected by dementia, in my region, I would like to have more opportunities to participate in our society; at all levels and wherever possible. I still want to contribute. The prerequisite is that we are allowed to step out of the shadows, are encouraged and shown acceptance and respect. Watch the panel discussion here: https://youtu.be/W7Yht3j7jCU

Watch my speech here: https://youtu.be/kN0zVjWP04c

In closing I want to say that I truly admire the work of the team at of State Department for Dementia M-V and Nele Kristin Meincke in particular. Nele is part of the project team at the State Department for Dementia and she kindly supported me in writing this article for Alzheimer Europe.

https://alzheimer-mv.de/landesfachstelle-demenz/jahresauftaktveranstaltung-der-landesfachstelle-demenz/

Pictured: Panel discussion with (left-to.right) Lars Krychowski (1st chairman of the DAlzG LV M-V), Kerstin Mieth (head of department of department 330 of the Ministry for Social Affairs, Health and Sport M-V), Lieselotte Klotz (person with lived experience), Hendrik Nolde (deputy project manager FAPIQ), Lars Prahler (Mayor of Grevesmühlen).