ALZHEIMER EUROPE
European Working Group of People with Dementia begins fifth term of office The European Working Group of People with Dementia began its fifth two-year term of office at an online meeting on 23 October 2020 and welcomed four new members.
The European Working Group of People with Dementia (EWGPWD) for 2020–2022 is composed of the following 14 members: Chairperson: Chris Roberts (UK – England, Wales and Northern Ireland) Vice-Chairpersons: Bernd Heise (Germany), Kevin Quaid (Ireland, new)
Members: Idalina Aguiar, Portugal; Stefan Eriksson, Sweden; Tomaž Gržinič, Slovenia; Nigel Hullah, UK – England, Wales and Northern Ireland (new); Petri Lampinen, Finland; Margaret McCallion UK – Scotland (new); Danny McDonald, UK – Scotland (new); Erla Jόnsdόttir, Iceland (new); Angela Pototschnigg, Austria; Helen Rochford-Brennan, Ireland; Geert Van Laer, Belgium. The group was launched by Alzheimer Europe and its member associations in 2012 and is composed entirely of people with dementia who are nominated by their national Alzheimer associations. They work to ensure that the activities, projects and meetings of
Alzheimer Europe duly reflect the priorities and views of people with dementia. They also consult on EU-funded research projects. The group operates independently and members elect their own Chairperson and Vice-Chairpersons. The Chairperson is also an ex-officio member on the Board of Alzheimer Europe, with full voting rights. During the group’s first four terms of office (2012–2014, 2014–2016, 2016–2018, 2018–2020), members have actively participated in Alzheimer Europe’s annual conferences and contributed to research conducted by external organisations on topics such as: meaningful outcome measures; social health; people with dementia as peer-researchers, palliative care and data sharing as research participants and in the context of Public Involvement; helped develop recommendations on dementiainclusive initiatives and contributed towards Alzheimer Europe’s work on various ethical issues. They have also attended a number of international dementia-related events, including at the European Parliament, as representatives of the group. For more information about the group, visit: https://www.bit.ly/EWGPWD
The members Idalina Aguiar Country: Portugal Diagnosis (type and year): Alzheimer’s dementia, 2012 Joined the group: 2016 A bit about me: I was born in 1940, in Madeira. My work gave me the opportunity to travel, which I enjoy. I also like to sing, dance, play cards, do crosswords, read and garden. My daughter (and carer) Nélida and I believe that a balance between drugs and complementary therapies is ideal in dementia, so I do a variety of different therapies. We also work to combat stigma, and fight for the rights of informal carers in Portugal. Stefan Eriksson Country: Sweden Diagnosis (type and year): Alzheimer’s dementia, 2017 Joined the group: 2018
A bit about me: I am from a small island called Kalvsund, just outside Gothenburg. I spent many years working on power plants around the world, mostly in the US, Sweden and Africa. I have always been active in sports and I still like to go to the gym. Since being diagnosed, I have also started doing gardening and enjoying more time outdoors. Tomaž Gržinič Country: Slovenia Diagnosis (type and year): Alzheimer’s dementia, 2016 Joined the group: 2017 A bit about me: I was born in Ljubljana in 1952 and spent most of my career at a well-known Slovenian graphic design company. I am very active, with a special interest in sailing, and in the summer, I go on sailing holidays with a close group of friends. Support from my closest family and friends plays a major role in my everyday life.
Bernd Heise (Vice-Chairperson) Country: Germany Diagnosis (type and year): Alzheimer’s dementia, 2016 Joined the group: 2018 A bit about me: I am married and live in Munich with my wife. For 34 years, I worked as a development engineer of semiconductor devices in the telecommunications industry, until my diagnosis. I am also a member of the Advisory Board of People Living with Dementia, founded by the German Alzheimer association (Deutsche Alzheimer Gesellschaft). My favourite hobbies are gardening and computer technology. Nigel Hullah Country: United Kingdom (Wales) Diagnosis (type and year): Early-onset dementia, 2012 Joined the group: 2020 (new member) Dementia in Europe 9
