Real Larnou | Image
| "I have been working in a bank for more than 30 years, and in the last 10 years I was a relationship manager for the agricultural sector. On daily basis I was responsible for credit applications of farmers, which involved visiting these clients at their farm to work out a credit call. About three years ago, while driving to one of my clients, I suddenly had a loss of orientation. This must have been the first sign that something was wrong. However, at that moment, I was not aware that this was my first confrontation with a symptom of Alzheimer’s, not knowing what Alzheimer’s disease really was. About a year later, I made a mistake in a daily routine file. Never before had I made such a similar mistake. Although, neither the customer, nor my employer was disadvantaged, I experienced this as a breaking point in my career. I felt I had no other option than to decide to stop working. I wanted to find out what was really wrong with me and made an appointment with my doctor. The struggle for a diagnosis lasted almost 6 months. On 1 July 2021, the diagnosis Alzheimer was confirmed. On the one hand, the diagnosis was a relief, because I finally knew what was wrong. On the other hand, it was very confronting because I had always hoped to end my career in a positive way. The diagnosis of Alzheimer’s disease meant for me the immediate end of my current function – I was not allowed to continue my specific role as a part-time job. My specific role was very stressful, with high targets and a lot of administration. Therefore, I was convinced that it was better to stop working instead of going on and no longer being satisfied with my job. However, my colleagues and employer were very understanding about my position." Real Larnou was nominated by Ligue Nationale Alzheimer Liga, to join the European Working Group of People with Dementia in October 2022. |
Stephen John McCleery | Image
| Stephen McCleery was born in Belfast, UK, in 1967 and graduated in law from Cambridge University in 1990. Following internships in Sydney and in Brussels at the European Commission, Stephen began work in London as an anti-trust lawyer, then in Milan, where he holds an MBA from the SDA Bocconi Business School. Stephen has been living and working in Milan since 2000. In 2020, during the pandemic, he was diagnosed with Alzheimer's disease and joined Alzheimer Europe in September 2022 as an "Italian" member. Stephen speaks Italian and French and he had two great passions: golf and classical music, although he is not able to enjoy them as much as before. Stephen John McCleery was nominated by Federazione Alzheimer Italia, to join the European Working Group of People with Dementia in October 2022. |
Petri Lampinen | Image
| "I was diagnosed with Frontotemporal dementia in 2015, but I refuse to let the difficulties associated with my dementia defeat me. In spite of them, I continue to live an active life, working in my garden, cycling and playing ping-pong and badminton. Being open about my condition and remaining as calm as possible in any situation helps me navigate life with dementia, with the support of others when needed." Petri was nominated by the Alzheimer Society of Finland; (Muistiliitto) in 2017 and was nominated again for the 2018-2020, 2020-2022 and 2022-2024 terms. |
Pia Knudsen | Image
| "My name is Pia. I’m from Aarhus, Denmark. I’m 59 years old and I am lucky to have a son, William, that lives in Barcelona. I’m also blessed with a daughter who lives in Copenhagen. I live alone in a small house. I’m educated as a visual artist, designer and teacher. I’ve made exhibitions in many places in Europe, and I’ve worked as a teacher at a folk high school and at a school for foreigners who live, study or work in Denmark. I’ve always loved my work – all of it! I also love the work that I’m doing now. Since I was diagnosed with Alzheimer's dementia two years ago, I have had the luck to be a kind of spokeswoman for people with dementia. Among things I’ve achieved is; In my everyday life I focus on preserving my physical and cognitive ability and strength. I do that by attending a qualified program tailored for people with dementia offered by the municipality of Aarhus. Furthermore, my calendar is often filled with social activities that I love being a part of." Pia Knudsen was nominated by Alzheimerforeningen, to join the European Working Group in October 2022. |
Bernd Heise | Image
| "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 favorite hobbies are gardening and computer technology." Bernd Heise was nominated to join the group in 2018, by the Deutsche Alzheimer Gesellschaft Selbsthilfe Demenz, and was Vice-Chairperson for the term 2020-2022. |
Marguerite Keating | Image
| Marguerite Keating, residing in Cashel, County Tipperary in Ireland, shares her life with her partner, James Brown, who is a significant source of support and joy. She is the mother of three grown daughters and the grandmother to eight grandchildren. On the 14th of February 2019, Marguerite was diagnosed with early onset Alzheimer's disease, a revelation that was both shocking and heartbreaking for her, especially at the age of 55. Initially struggling to accept her diagnosis, Marguerite has since dedicated herself to providing hope and support to others facing similar challenges. She is actively involved with several groups including the Alzheimer Society of Ireland's (ASI) steering group, the Understand together working group, and two local memory cafés. Moreover, she delivers talks for the Health Service Executive (HSE) & the ASI, aiming to offer hope to carers and those newly diagnosed with Alzheimer's, drawing from her own experiences of feeling isolated and devastated in the early stages of the disease. Impressed by the global efforts in Alzheimer's research and support, Marguerite has spoken at various conferences, highlighting the commonalities shared by people from different parts of the world. Marguerite Keating was nominated by The Alzheimer Society of Ireland, to join the European Working Group in October 2022. |
Helen Rochford-Brennan | Image
| Helen Rochford-Brennan is from Tubbercurry in County Sligo, Ireland. Helen spent many years working in the tourism and disability sectors and has also devoted tireless years to community activism, working at board level in several organisations. In July 2012, Helen was diagnosed with early onset Alzheimer's disease. She has been Chair of the Irish Dementia Working Group, which is resourced by The Alzheimer Society of Ireland. Helen has used her time with the Irish Dementia Working Group to raise awareness of dementia and raise the profile of human rights for people with dementia. Helen joined the European Working Group of People with Dementia in October 2014, nominated by The Alzheimer Society of Ireland; and served as Vice-Chairperson until 2016 and then as Chairperson until October 2020. |
Geert Van Laer | Image
| Geert († 17 January 2023) 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 in the head office in Antwerp in Belgium, he has worked with people from all over the world. In 2017, he got a diagnosis of early stage dementia and in 2018 he was nominated by Ligue Nationale Alzheimer Liga; as a member of the EWGPWD. He joined a newly started working group in his own country also. |
Danny McDonald | Image
| My name is Danny McDonald, I live in Clydebank, just outside Glasgow, Scotland. I am married with two grown up children who still live at home. I was diagnosed with Vascular Dementia four years ago. Initially this came as a crushing blow but on making contact with Alzheimer Scotland and the subsequent home visit from a Dementia advisor the diagnosis and what this entailed became much clearer. I am involved with many activities from day centre to choir and as a family we take part in quiz nights. I have benefited from peer support and as a couple we have made many friendships some of whom we socialise with as a result. The last few years have proved to us that while you live within the parameters of the diagnosis you can live well with dementia. Danny McDonald had been member of the Scottish Dementia Working Group. He was involved with many activities from day centre to choir and as a family they took part in quiz nights. In 2017, he was nominated by Alzheimer Scotland to join the EWGPWD. |
Tomaž Gržinič | Image
| Tomaž Gržinič was born in Ljubljana in 1952. His education was in graphic and art editing and most of the life he has been an employee at a famous Slovenian graphic company. His occupations included graphic preparation for printing and editing or designing articles for professional magazines, newspapers or books, both at national and international level. He is married and has 2 children, a daughter and a son. He was diagnosed with Alzheimer's dementia in 2016. Since the diagnosis, his social network has remained the same as it was before. Support from his closest family and friends plays a major role in his everyday life. He was diagnosed with Alzheimer's dementia in 2016. Since the diagnosis, his social network has remained the same as it was before. Support from his closest family and friends plays a major role in his everyday life. Tomaž is retired, but is still very active. In his spare time, he enjoys reading newspapers, watching sport, hiking and gardening at his weekend house, near Ljubljana. He occasionally works for the graphic company and helps with editing and designing articles for magazines. He is a devoted husband and father and could not imagine his life without sports and spending time with friends. He also has a special interest in sailing and in summer, he usually spends two weeks sailing in the Mediterranean with friends. Tomaž is funny, sociable, open-minded and positive most of the time. Even small orientation problems do not significantly affect his everyday functioning. Tomaž Gržinič joined the Slovenian Working Group for People with Dementia in 2017 and was also elected President of the group. In Autumn 2017, he was nominated by Spominčica - Alzheimer Slovenia to join the EWGPWD, where he is happy to share his experiences of how to live well with dementia. He was nominated by Alzheimer Slovenia. |
Stefan Eriksson | Image
| Stefan Eriksson is from a small island called Kalvsund, just outside Gothenburg, in Sweden. Stefan spent many years working with power plants around the world. He mostly worked in the USA, Sweden and Africa. In September 2017, Stefan was diagnosed with Alzheimer’s disease. He has always been active with sports and still likes to go to the gym. After the diagnosis, he started doing gardening and enjoys the time outdoors. Stefan has always been a happy person and enjoys meeting people. Stefan was nominated by Alzheimer Sverige in 2018. |
Idalina Aguiar | Image
| Idalina Aguiar was born in 1940 in Madeira, a Portuguese Island. She was a group leader, during several years, at international and national organizations like TW, Snooker, etc., having the opportunity to travel, one of the things she most values. Her hobbies include: singing (specially Fado, a Portuguese style of music), dancing, rhyming, playing cards, crosswords, poetry, read, working in the garden. She was diagnosed with Alzheimer’s disease in 2012 and since then, she and her family participate in different activities of Delegation of Madeira of Alzheimer Portugal. With their daughter Nélida, they have had an approach to the disease that differs from society in general, they are of the opinion that a balance between drugs and complementary therapies is ideal. They try to combat the stigma created against dementia. So Idalina does Laughter therapy, active meditation, cognitive stimulation and music therapy among other activities that are complementary and prove to be an asset. And together try to combat the stigma created against dementia. Idalina was nominated by Alzheimer Portugal, joining European Working Group of People with Dementia in 2016. She felt this is an opportunity to put her skills and knowledge in the service of other people with dementia and to be an example that a person with dementia can be an active member of society. She has been very active in defending all the rights of people with dementia and their carers. Her work in EWGPWD has allowed her to have a more comprehensive view of the reality of her country, especially when compared with other European countries. |
Carol Hargreaves | Image
| Carol joined the Scottish Dementia Working Group in 2013 and became Vice Chair in 2017. In joining the group, Carol felt like she was doing something positive with her life and she loves working with other people, having fun and learning new things. Carol enjoyed being part of the European Working Group and using her knowledge and experiences to influence at a European level. She joined the European Working Group of People with Dementia in October 2016 and was nominated by Alzheimer Scotland again for the 2018-2020 term. |
Amela Hajric | Image
| Amela Hajric was nominated by Udruženje AiR (Bosnia and Herzegovina) for the group's 2016-2018 term and again for 2018-2020. |
Nina Baláčková | Image
| Nina Baláčková was born in 1958 in Prague, Czech Republic, where she has lived all her life. She studied at the Economics School and has worked as an accountant. Nina was diagnosed with Alzheimer’s disease in 2007. Shortly thereafter, she decided to help publicise information about dementia to more people. Nina was nominated by the Czech Alzheimer's Society to join the European Working Group of People with Dementia in October 2012, serving until 2018, and was the group's Vice Chairperson in 2013-2014. She was re-nominated and returned to the group as a member from January 2020 until October 2020. |
Thomas Maurer | Image
| Thomas Maurer was nominated in 2018 by Association Alzheimer Suisse. |
Miha Kastelic | Image
| Miha Kastelic († 18 March 2023) was from Ljubljana, Slovenia, but lived in the Czech Republic since 2008. Miha spent many years working in the cleaning business working on different regional sales and marketing positions. He travelled all over Europe for many years and spent a lot of time with sales teams working on many hygiene projects for key clients. In December 2017, Miha was diagnosed with early onset Alzheimer's disease. He joined the European Working Group of People with Dementia in October 2018, nominated by the Czech Alzheimer's Society. Miha left the group in December 2019. |
Helga Rohra | Image
| Helga Rohra was born in 1953. She trained as an interpreter and speaks six languages. She received a diagnosis of Lewy body dementia in 2008 and has actively advocated for the rights of people with dementia ever since. In 2010, her book “Stepping out of the shadow” was published in Germany and Romania. She has since made many public appearances to raise awareness of dementia. She was the first Chairperson of the European Working Group of People with Dementia, and served in this position for two consecutive terms, 2012-2014 and 2014-2016. Helga was nominated by the German Alzheimer Association DAlzG in 2012, 2014 and 2016. |
Karin Gustafsson | Image
| Karin Gustafsson was diagnosed with Alzheimer's disease in 2014 and celebrated her 65th birthday at the end of 2015. She lives in Gothenburg, Sweden with her husband and their three children and eight grandchildren. She pursued a career in education, starting as a pre-school teacher and later becoming a Doctor of Pedagogy. Karin was nominated by Alzheimer Sverige. She served on the European Working Group of People with Dementia during 2016-2018. |
Alv Orheim | Image
| Alv was born in 1947 in Bergen, Norway. He holds an MSc in Economic Geology from the Norwegian University for Science and Technology in Trondheim. He worked in coal mining and petroleum exploration for 35 years, with the last 10 years as an independent consultant. Alv was diagnosed with Vascular Dementia in 2009. He joined the Norwegian Working Group for People with Dementia in 2014 and the European Working Group of People with Dementia in 2015. Alv was nominated by Nasjonalforeningen for folkehelsen, the Norwegian Association for Health. He was a Vice-Chairperson of the group from October 2016 to December 2017. |
Stig Atle Aavik | Image
| Stig Atle Aavik († 11 June 2021) was born in 1959 in Stockholm, Sweden of Norwegian parents. He studied at the Norwegian Army Academy and earned a Master’s degree from the Norwegian School of Business Administration in 1994. Stig had three children and was an avid cross-country skier. He was diagnosed with Alzheimer’s disease on 1 May 2012 and joined the European Working Group of People with Dementia in October of the same year. Stig was nominated by Nasjonalforeningen Demensforbundet. He served on the EWGPWD during 2012-2014. |
Hilary Doxford | Image
| In December 2012, at the age of 53 Hilary was diagnosed with early onset Alzheimer's Disease. She is keen to do all she can to assist in finding a cure for dementia and volunteers for the Alzheimer’s Society in England as part of their research network and user involvement programme. She is still working and intends to continue working for as long as possible to show that people with dementia can still make a valuable contribution to their organisation. Hilary is also a member of the World Dementia Council, and indeed was the first person living with dementia to join, in January 2015. At home she enjoys anything to do with archaeology and she and her husband love the sea and walking their dog Tilly. Hilary was nominated by the Alzheimer's Society. She joined the European Working Group of People with Dementia in October 2014 and served as a Vice-Chairperson until 2016. |
Jean-Pierre Frognet | Image
| Jean-Pierre († 7 April 2016) was diagnosed with Alzheimer's disease in 2007 and joined Belgium’s Ligue Nationale Alzheimer Liga to find out more about his condition. The Ligue nominated him as a member of the European Working Group of People with Dementia, on which he served from 2012 to 2014 and was elected as Vice Chairperson in 2013. He was very active in the group and also participated in Alzheimer Europe’s annual conferences in Malta (2013) and Glasgow (2014). He was particularly keen to see more services for younger people with dementia, so they can remain active for a longer time. |
Raoul Grönqvist | Image
| Raoul Grönqvist was born in 1951 in Helsinki, Finland. He is a tribologist and a Doctor of Technology and speaks four languages. He likes to play classical guitar and also enjoys walking his poodle. He was diagnosed with Alzheimer’s disease and dementia with Lewy bodies at the age of 60 and hopes that his work experience will help him contribute to the work of the European Working Group of People with Dementia and consequently help other people with dementia. He is also part of a self-support group in Finland. Raoul was nominated by Muistiliitto and served on the European Working Group of People with Dementia during 2012-2016. |
Agnes Houston | Image
| Agnes was diagnosed with Early Onset Alzheimer’s Dementia in 2006 at the age of 57. She is an active member and Former Chair of the Scottish Dementia Working Group. Agnes has a long track record of campaigning for best practice and improving lives of people with dementia, in Scotland and abroad. She is also a board member of Dementia Alliance International. In 2016, she was awarded a Churchill Fellowship to conduct research on sensory challenges faced by people with dementia. Agnes was nominated by Alzheimer Scotland. She joined the European Working Group of People with Dementia in 2012 and served as Vice-Chairperson of the group until 2016. |
Ingegerd Pousard | Image
| Ingegerd Pousard was born in March 1941 in Östersund, Sweden. She has three daughters and spent most of her working life as a doctor’s secretary. In May 2008 she received a diagnosis of dementia. Since then, together with her family, she has tried to understand a life with Alzheimer’s disease. Ingegerd is particularly interested in discovering and sharing new information about dementia. Ingegerd was nominated by Alzheimerföreningen i Sverige. She served on the European Working Group of People with Dementia during 2012-2014. |
Dermod Slevin | Image
| Dermod († 29 January 2018) was born on March 3rd 1940. He was born and reared in Donnybrook in Dublin. Dermod spent 35 years working for the national broadcaster RTÉ as a technician, involved in the installation of broadcasting equipment throughout the country. He took early retirement and opened a coffee shop in Donnybrook, but due to unfortunate circumstances was forced to give this up. Dermod enjoyed travel over the years and visited Spain, Thailand, Cambodia and Norway. He was diagnosed with Lewy Body Dementia in 2010 at the age of 70. He was nominated by the Alzheimer Society of Ireland and served on the European Working Group of People with Dementia during 2012-2014. |
Rozel Snell | Image
| Rozel was born in 1944 in Southampton and grew up in Jersey. She is diagnosed with both Alzheimer's and Parkinson’s diseases. Her visit to the 2012 Alzheimer Europe Conference was a wonderful experience: being able to stand up and speak about her condition without fear was an experience she has never felt before. Rozel has three sons and lives at home with her husband Brian - without whom she admits life would be quite difficult. Rozel was nominated by the Dementia Jersey and served on the European Working Group of People with Dementia during 2012-2015. |
Bojan Španja | Image
| Bojan († 7 March 2022) was born in June 1955 in Ljubljana, Slovenia. He trained as a systems engineer and worked for 20 years in the computer department of a big company. In 1996, he established his own company and successfully developed and sold computer software for 13 years. He had always been an avid sportsman and angler, as well as a motorsports fan. Bojan was diagnosed with Alzheimer's disease in 2010 and became a member of the group in 2012. Bojan was nominated by Alzheimer Slovenija and served on the European Working Group of People with Dementia during 2012-2015. |
Daphne Wallace | Image
| Daphne Wallace († 23 December 2020) was born in 1940. She spent most of her childhood in Scotland but then moved with her family to southern England. She studied Medicine at the University of St Andrews and specialised in Psychiatry. Daphne initially worked with people with mental retardation but then changed to care of the elderly: she was notably involved in setting up services for older people in Leeds. She retired in 2000 and was also a Trustee of Alzheimer's Society UK for 12 years. In 2005, Daphne was diagnosed with vascular dementia. After her diagnosis, she campaigned for the rights of people with dementia and was involved in research projects related to the rights and care of people with dementia. Daphne was nominated by the Alzheimer's Society. She served on the European Working Group of People with Dementia during 2012-2014. |