Involving people affected by dementia and the wider community in shaping research in a meaningful, timely and active way

Annick Germeys from Belgium is a mother of two and the wife of Geert, who was diagnosed in 2022 with young-onset Alzheimer’s disease at the age of 53. She was professionally active in the health care sector but is now retired.

She is a board member and part of the carers’ working group of Alzheimer Liga Vlaanderen, as well as a member of the European Dementia Carers Working Group. She is an advocate for empowering people with dementia and their families and hopes to make a difference in creating better care and support for people living with dementia. She takes part in research and studies whenever she can.

Leslie Perry is born in Rugby, England in March 1946. Married to Margaret, 2 children, and 2 grandchildren. Les worked on UK railways for all his working life. As a young man shovelling coal into steam engines, then driving passenger/freight trains until 2002 when he suffered a stroke due to an unknown – until then – heart condition.

Following recovery, he began firing steam engines again on main line vintage rail excursions until his retirement. Les receives medication for decompensated cardiac failure and was diagnosed with mild cognitive impairment in 2025. In retirement, Les enjoys tending to his garden, regular visits to the gym, trips out to markets and garden centres.

Gerda Van Tongerloo is a member and vice-chair of the European Working Group of People with Dementia of Alzheimer Europe. She was diagnosed with Vascular Cognitive Impairment in 2017. She lives independently in the Netherlands with her three dogs.

She is very active in advocating for dementia and is co-researcher in Brain Power, a research group of the University of Applied Sciences Utrecht.  She is a member of the JAIN (Joint Artificial Intelligence Network) expert committee. She has many hobbies, among which playing tennis, soccer, boxing, cooking, singing in a choir, and playing percussion.

Kevin Quaid is 62 years old and married to Helena. He was first diagnosed with Parkinson’s, just over 11 years ago, then later diagnosed with Lewy Body Dementia also. He is the current Chair of the Irish Dementia Working Group, the Chair of the European Working Group of People with Dementia, on the board of Alzheimer Europe, he is the Co-founder of Lewy Body Ireland. Kevin is also a member of the Dementia Research Advisory Team as well as Dementia Trials Ireland. He is very involved in various research projects, not just in Ireland but also across Europe, as an expert by experience, and is the author of two books about lewy body dementia. His first book was “Lewy Body Dementia Survival and Me”. He has published his second book titled “I am KEVIN not Lewy” and is now writing his third book.

Kevin is also a motivational speaker and talks about becoming your own leader and looking for and finding the positives and passion in your life. Kevin has spoken at many conferences internationally as well as in Ireland and to many sports organisations and companies.

Kevin was presented in 2022 with ‘The Presidential Award’ from Longford International College Ireland, for “his outstanding achievements in bringing awareness of Lewy Body Dementia not just in Ireland but globally too” and in November 2023 Kevin was awarded a Horary Doctor of Philosophy by the Rushford College and the Longford international College.

Sylva Dneboská is from the Czech Republic and lives in Praue. She is a pensioner and has two adult children and four grandchildren. She lost her dear husband Milos 3 years ago. During her professional life, she worked in the insurance industry and at the very end of her career she switched into social services doing fundrising for one non profitable organization of early care.

With her husband Milos, they were very sportive - he played baseball, and she played softball, on the top level - representing their country on the international events. After having finished his active career as a player, he continued as a coach. In the year 2014, he was diagnosed with Alzheimer’s disease at the age of 68 and after that she helped him to face it and took care of him till his passing away in the year 2022. 

During this time, she closely cooperated with Czech Alzheimer Association and she was very pleased when she was offered to represent them in the Carers Group of Alzheimer Europe. 

Miriam Pannone has 78 years old and she is a retired professor of Statistics from the University of Perugia. She is strongly motivated to contribute to the DORIAN GRAY project as a member of the Public Involvement Board, driven by her deep personal interest in promoting healthy ageing and preventing cognitive decline.  

Having witnessed the profound impact that cardiovascular and cognitive diseases can have on individuals and families, she is committed to supporting research that develops innovative, patient-centred approaches. 

Her participation reflects both her personal conviction and her desire to ensure that the voices, needs, and experiences of patients and the wider community are integrated into the project. She believe that active public involvement could be important to shaping effective strategies for prevention, risk reduction, and improved quality of life for older adults. 

Barry lives in the Highlands of Scotland with her wife Margaret who was diagnosed with early onset Alzheimer’s disease around twelve years ago when she was just 54 years old. Since then, they have been involved with organisations such as Alzheimer Scotland and Alzheimer Europe and taken part in numerous research projects. They aim to live the best life they can for as long as possible and contribute to developments in the diagnosis and treatment of dementia along the way.