Luxembourg, 21 September 2022 – Today is World Alzheimer’s Day, a day dedicated to raising awareness of Alzheimer’s and other types of dementia, as well as challenging the stigma surrounding dementia. This year, to mark this important day, Alzheimer Europe is proud to collaborate on a new initiative called “What Makes You, You?” The initiative is a collaborative effort between Roche, the European Working Group of People with Dementia (EWGPWD) and Alzheimer Europe. It aims to help create a world where people living with diseases that affect the brain, like Alzheimer’s, can live life to the fullest and stresses the importance of looking beyond a person’s diagnosis and of valuing them for who they are. Short videos (approximately three minutes each) have been created, featuring three members of the EWGPWD who are living with Alzheimer’s disease, together with some of their family members. Each tells the story of who they are, in their words.
In the first video, EWGPWD Vice-Chairperson Bernd Heise, who used to be an engineer and is still very keen on technology, appears alongside his wife Hilde, who is amazed at his continuing ability to work with technology, though she notes that it takes him much longer than it used to. Bernd says: “I try to be as much as I was before, but I was an engineer and very attached to technical solutions. This has changed a bit. Now I talk to and learn from other people more, rather than trying to do everything by myself. I change, but I am still me. You have to carry on and just try to live life as well and as enjoyably as possible.”
The second video features EWGPWD member Helen Rochford-Brennan, who stresses that it is vital for her to keep focusing on the same things she always has: “Working for the rights of all people is important to me to this day. Equality for all. I am also a political activist and I think I must keep doing that, to keep being the person that I am. All that has changed is that I have a short-term memory problem. Of course I forget, but that’s OK. That has not changed at all my passion about rights, about my rose garden and about the things that I believe in and the things that I love, like getting out in my car, walking my dog and enjoying my life. That’s Helen.”
EWGPWD member Stefan Eriksson and his daughter Janni Ahlgren feature in the third video. Janni shares her father’s and the rest of the family’s positive outlook on life and the importance they all place on Stefan continuing to enjoy life as much as possible and staying as active as he always has been: “Even though he has Alzheimer’s now, he still has goals in his life and he still wants to achieve them and continue doing the things he loves. My dad is always going to be dad, he’s always going to be Stefan. Just because he has Alzheimer’s doesn’t mean he is going to become a totally different person. He still has his vision in life, his goals, his hobbies and interests that he loves to do. We always try to encourage him to stay the Stefan that he is.”
You can watch the videos on our YouTube channel, here:
Alzheimer Europe is delighted to have worked on this initiative in collaboration with Roche . We would also like to express our gratitude to Bernd, Hilde, Helen, Janni and Stefan for sharing their stories to help raise awareness, combat stigma and create a world where people with dementia can continue to be who they are, this World Alzheimer’s Day and every day.
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For further information, contact: Jean Georges, Executive Director, Alzheimer Europe, 14, rue Dicks, L-1417 Luxembourg, Tel.: +352-29 79 70, Fax: +352-29 79 72, jean.georges@alzheimer-europe.org, www.alzheimer-europe.org
Notes to editors:
Alzheimer Europe is the umbrella organisation of national Alzheimer associations and currently has 35 member organisations in 32 European countries. Alzheimer Europe sees its mission as changing perceptions, policy and practice in order to improve the lives of people affected by dementia. Alzheimer Europe’s strategic objectives are: providing a voice to people with dementia and their carers, making dementia a European priority, changing perceptions and combating stigma, raising awareness of brain health and prevention, strengthening the European dementia movement and supporting dementia research.
Our collaboration with pharmaceutical companies
Alzheimer Europe discloses all income received from companies in support of its corporate and public affairs activities, in a transparent fashion, via its website, Annual Report and at its Annual Meetings.
European Working Group of People with Dementia
The European Working Group of People with Dementia was launched by Alzheimer Europe and its member associations in 2012. The group 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 living with dementia. The Chairperson is also an ex-officio member on the Board of Alzheimer Europe with full voting rights.
About What Makes You, You?
Neurological conditions do not define who we are. What Makes You, You? shares inspirational stories of people to celebrate the unique qualities that make them who they are. By sharing these stories, we can help tackle stigma and change the conversation around living with neurological conditions. What Makes You, You? is an initiative developed and funded by Roche, in collaboration with organisations that support those living with neurological conditions, including Alzheimer’s disease.