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Members
Individuals Shaping Dementia Research
Petri Lampinen
- Resilient dementia rights advocate
- Active in memory organizations
- Channels energy into meaningful activities
I am Petri Lampinen from Finland. I was diagnosed with frontotemporal dementia at the age of 52. Getting the diagnosis was a very challenging time because it took a little over two years to get it. After getting the diagnosis, new paths began in life. I did not give up but joined the activities of the local memory association. I also worked in the Finnish Memory Association's Dementia Actives for three years.
I worked as a member of Alzheimer Europe's Europe Working Group of People with Dementia from 2017 to 2024. I am active in many areas and I know how to use my impulsiveness to my advantage. I try to direct it to sensible activities, such as cycling, walking in nature, and working as a lecturer in healthcare institutions where I talk about my experience, for example.
Nina Lampinen
- Experienced dementia caregiver and advocate
- Chair of regional memory association
- Supports family and professional roles
I am Nina Lampinen from Finland. My husband Petri has frontotemporal dementia. The delay in diagnosis was a very difficult time for me and my family. At that time, the family included a small boy and teenage girls. However, we have found our own way after that difficult situation. The children have been educated and started their own families. I have also been educated and changed jobs a few times. Over the past years, I have also worked as Petri's assistant, when he was a member of the European Working Group of People with dementia.
I have been a member of the Finnish Memory Association's working group for people with dementia and their loved ones. I now serve as the chairman of the South Ostrobothnia Memory Association. I have worked in the activities of caregivers before. My experiences of combining family and dementia have interested many parties.
Stephen Kennedy
- Former international lorry driver
- Active dementia advocate and speaker
- Embraces farm life and community
My name is Stephen Kennedy and I live at home with my wonderful wife and unpaid Carer, Carmel.
We live in a bungalow on a small farm in Co.Fermanagh, the most westerly part of the British isles. I worked for 35 years as a long-distance international lorry driver operating anywhere in or between Ireland, Europe, Scandinavia, North Africa and the Middle East. I was fluent in the German language and could get by well enough in Spanish, French and Italian.
I received my diagnosis of Frontotemporal Dementia and early onset Alzheimer’s in 2016 and lost my lorry drivers licence immediately. As I was working for a German company, they were absolutely fantastic, paying me my full wage each week for six months and also continuing to pay me 50% of my wage for a further six months. This was truly a massive help as we navigated the early days of unemployment and having a diagnosis of dementia.
For the first time since leaving school, I was unemployed. I started searching for information on my condition via Google and the internet. This is without doubt, the worst thing I could have possibly done. I joined a small local group for people with dementia, “Memory Lane” held fortnightly at Omagh library. I then joined DementiaNI as my hunger for more dementia information grew. I then joined the Alzheimer’s society group and the 3 Nations Dementia Working Group. I was becoming very active in many groups hoping to be able to provide an easier passage for those coming behind me with a dementia diagnosis. I had definitely become a dementia activist.
At home we have dogs that we show all over Ireland and UK. Preparation is a time-consuming job, but has to be done. A local farmer keeps cattle in a cattle shed up behind our house and I enjoy working with him and generally helping out. Between the farming and the dementia, I am kept busy each day as I battle to show that having dementia does not have to be life ending, but simply a new chapter in the book of my life.
I honestly feel that although I have lost friends along the way, I have made new friends and have such strong bonds with them. I can no longer read a book, because once I put it down, I forget what I was reading and have to start again. My life since dementia diagnosis is now so much better, I am no longer away from home for up to 7 or 8 weeks at a time with all of the responsibilities I had, working day and night to meet crazy delivery times or racing to catch a ferry.
Now I am at home, with my wife, living a normal life, tipping away around the farm, walking with the dogs, chatting to friends and neighbours and no stress or constant clock watching, enjoying life and happy to awaken each morning with my diagnosis, Thank you Dementia, you are not always the horrible condition that you are made out to be, we can live a good life happily beside you.
Margaret McCallion
- Diagnosed with genetic FTD
- Active in dementia advocacy
- Promotes research and resilience
Hello, I am Margaret McCallion. I live in Glasgow, Scotland - UK. I was diagnosed with Frontotemporal dementia CR9ORF72 in the summer of 2016, this was caused by a mutation of a gene, however my diagnosis does not define who I am. I am an active member of Scottish Dementia Working Group (SDWG) as well as the European Working Group of People with Dementia (EWGPWD). I have taken part in research since my diagnosis in order to highlight that young and old people may be diagnosed with Alzheimer’s or with any kind of dementia, the important thing is to continue to do what you have always done, to the best of your ability.
Carmel Geoghegan
- Founded Dementia Ireland Empowering Communities
- Advocates for isolated, unheard voices
- Supports carers and service access
Carmel's personal experience of becoming her late Mum's primary carer prompted her to establish Dementia Ireland Empowering Communities.
Dementia Ireland advocates for the rights of those whose voice is not heard - highlighting social and rural isolation is very important.
Advocating for support and services for those not reached or heard and for the paid and unpaid care support.
As the numbers of those receiving a diagnosis rises at an alarming rate it is vital that the spotlight is held on the less vocal.
Eamonn Dobbyn
- Diagnosed with frontotemporal dementia
- Active in research and advocacy
- Supports peers through lived experience
I am Eamonn Dobbyn and I was diagnosed with Frontotemporal dementia at the age of 55. However, this hasn’t stopped me from working on lots of projects on different topics at the Alzheimer’s Society and the university. I have also helped build peer buddy support and coproduced some investigation with researchers.
I am a very active person and also do media press, radio and have participated in several conferences. I am also a member of The 3 Nations Dementia Working Group of Alzheimer’s Society where I continue to be part of the society and help others with dementia.