Members of the PAB

The European Working Group of People with Dementia

The EWGPWD wahttps://www.alzheimer-europe.org/var/plain_site/storage/images/media/images/ewgpwd-2018-2020-small2/986726-1-eng-GB/EWGPWD-2018-2020-small_gallery_big.pngs set up in 2012 by Alzheimer Europe. It is composed of people with dementia from different European countries and to date has 13 members. 

The members of the EWGPWD have contributed to several European research projects in the context of PPI. Many of them are very active in raising awareness about dementia and advocacy work at national and international level.

To learn more about the group please visit this website.

Stefan Eriksson (Sweden)

https://www.alzheimer-europe.org/var/plain_site/storage/images/alzheimer-europe/who-we-are/european-working-group-of-people-with-dementia/current-members/stefan-eriksson/986815-1-eng-GB/Stefan-Eriksson_large.jpgStefan is from a small island called Kalvsund, just outside Gothenburg. Stefan spent many years working on power plants around the world. He mostly worked in the US, Sweden and Africa. In September 2017, Stefan was diagnosed with Alzheimer’s dementia. He has always been active in sports and still likes to go to the gym. After the diagnosis, he started doing gardening and enjoys time outdoors.

Stefan said, “I wanted to join the RADAR-AD PAB core group because I want to help people in my situation and hopefully with this project we can go a long way." 

Helen Rochford-Brennan (Ireland)

Helen is the Chairperson of EWGPWD and former Chair and founder member of the Irish Dementia Working Group. She has early onset Alzheimer’s. She campaigns to raise awareness of dementia through a right based approach. She has contributed to two books about Human Rights and Legal Capacity in dementia. She engages and collaborates with several national and international researchers in different Universities and organisations (National University of Ireland, University College Cork, Alzheimer’s Society of Ireland, WHO, ICHOM, Global Brain Health Institute Fellows, etc.) and policy makers (monitoring Committee of Ireland’s dementia strategy). In 2018, she was awarded an Honorary Doctorate of Laws by the NUI Galway.

Helen said, 'How I function every day will determine my current and future health. Technology which supports my ability to take part in activities that bring joy to my life is critical to my quality of life'. This is important research which will help future generations and I am delighted to support RADAR-AD - their work will help us all: their dream is my dream'.

Chris Roberts (Wales, UK)

https://www.alzheimer-europe.org/var/plain_site/storage/images/alzheimer-europe/who-we-are/european-working-group-of-people-with-dementia/current-members/chris-roberts/799460-9-eng-GB/Chris-Roberts_large.jpg

Chris is from Wales in the UK and was diagnosed with early onset mixed Dementia (vascular and Alzheimer’s) in his early 50’s. He is an Honorary Lecturer for and Honorary Fellow at Bangor University, co-founder of the 3 Nations Dementia Working Group and contributes to several different expert groups.

Chris said, “Using my experience of dementia and technology to assist in this project is very exciting, I think this research is very valuable and will make a huge difference for future diagnosis and care”

Geert Van Laer (Belgium)

https://www.alzheimer-europe.org/var/plain_site/storage/images/alzheimer-europe/who-we-are/european-working-group-of-people-with-dementia/current-members/geert-van-laer/992354-1-eng-GB/Geert-Van-Laer_large.jpgGeert was born in a small village called Merksplas in Belgium.  His father was a dairy farmer but he chose to study digital technology.  He worked for 30 years as a telecom software engineer and he spent a long time in Norway, Germany, Israel and China for his job. Even when in the head office in Antwerp, Belgium, he worked with people from all over the world. In 2017, he got a diagnosis of early stage dementia. He is also a member of the recently-formed Flemish dementia working group in Belgium.

Geert said, "I am a patient and I want to help people in the same situation. I have knowledge about technology and I want to contribute to society."

Janni Ahlgren (Sweden)

Janni is from Gothenburg in Sweden. She is Stefan’s daughter and one of his carers. She recently finished her media technology degree at Malmö University and now works as a Web Content Specialist.

Janni said “I have knowledge about both the condition and technology. I believe in this project and therefore I want to be part of it and help out as much as I can to make a change for people in the future." 

Jayne Goodrick (Wales, UK)

Jayne’s husband was diagnosed with mixed dementia in 2012. After overcoming the shock and distress of an unexpected diagnosis they have thrown themselves into raising awareness of dementia and about research into dementia - what it is, why you should, and how to become involved. Jayne also sits on many groups and committees in her own right as a Carer, from grass roots local level, up to governmental level. She received a Point of Light award from the UK Prime Minister in March 2019 in recognition of this voluntary work.

Jayne said, “When dementia is mentioned you are thrown into a pit of confusion and despair.  You are hopeless.  Research gave us back that hope when we thought there was none”

Nélida Aguiar (Madeira, Portugal)

Nélida Aguiar is 46 years old, an executive manager, a business woman and is currently caring for her mother who has dementia. She has a background in biology and is an expert by experience in dementia. She is a member of Alzheimer Portugal where she participates in numerous activities and conferences. She is also a very active member of the National Association of Informal Caregivers, in Portugal, especially in Madeira where she lives. Together with her mother, she tries to combat the stigma of dementia and defend the rights of people with dementia and their family carers.

Nélida said, “I think this work will help demystify the disease, spreading information about how it is possible to live with the disease despite its limitations and is also an opportunity to put my knowledge to the service of others and to be an example of an active member of society. It also allows us to have a broader view of the reality of our country, especially when compared with other European countries.”

Ikuko Van Laer (Belgium)

Ikuko is from Osaka, Japan. She met Geert during her business stay in Israel. Three years later, she stopped her job to move to Shanghai for his job. In 2000, they came back to Belgium with baby twins and eventually settled in Antwerp. Since Geert’s diagnosis of dementia, she has been supporting his daily life and his activities.

Ikuko said, "I believe there is a great potential in technology. Appropriate products can be very useful to improve the situation of the people with dementia. But it is a big issue to determine what can be appropriate.  As an actual carer, I want to bring my experience and contribute to this project."

Sophia Harms (The Netherlands)

After secondary school, she started to work. At first as a youngster in the bookkeeping dept. of a large shipping company. She made fast promotions and after 5 years she had herself worked up to secretary of the board of directors, and later to public-relations officer of the Dutch subsidiary of Elf (now Total) in Rotterdam. After 3 years she quit that job and founded together with her husband in 1973 a company in investments. A few years later she joined the family-company of her husband; an agency in car-parts. That was sold in 2011.

In the mean time, she joined in 1981 (as a part-time job) a financial holding company, in which she is up until today still active. Her great passion (from childhood onwards) is still sculpturing. See her website www.arteliersophia.nl

Robin Harms (The Netherlands)

After university (econometrics at Erasmus university/Rotterdam) he started working in 1971, as a consultant in a consultancy company. He quit this job in 1973, in order to found together with his wife Sophia an investment company. A few years later he joined the family company, founded in 1919 by his grandfather. An international agency in car-parts. That was sold in 2011. Since then he assists his wife Sophia with her ARTelier.

In February 2019 he noted that his short-time memory was not as it used to be. Mci was the diagnose. It could be a possible Alzheimers disease. But in this stadium, it could not (yet?) be confirmed nor denied.

Both Sophia and Robin have joined the PAB because both do want to be actively involved in any possibility to fight Alzheimer.