Attending The 2023 Alzheimer Europe Conference in Helsinki as a Person Living with Dementia: Reflecting on the experience

The 2023 Alzheimer Europe Conference motto was “new opportunities in dementia care, policy and Research” and that is exactly what motivated Ruby (a person living with dementia, and advocate) and her husband Pasha to travel to Helsinki to attend the conference in person. The pair were “thirsty for information” and excited to not only attend and connect with others but present a session themselves as part of the conference. They were eager to learn how other people from different countries were living with dementia, benefiting from available programs, and how their experience differs from others living around the world.

Ruby and Pasha reflected that conferences are traditionally highly represented by academics and given the nature of this conference, felt it was important to represent their experiences for other people like them trying to understand the nature of this journey. The pair acknowledged that the travel would not always be easy, noting that Ruby needs time to adapt in a place in order to feel comfortable, however, they love to travel together and learn about a place by enjoying the moment and taking it day by day. Pasha notes mentioning to his wife Ruby “don’t worry if you forget it, enjoy it, we are taking lots of pictures, and we can reflect on the memories”.

Ruby was excited to meet some new people and amazed to see how they connected. As noted by the pair, for people with dementia – it is a motivating, to learn about people, even those who speak different languages but still connect in different ways. Pasha stated that “Ruby kept those feelings longer than the conversation and though she might not be able to remember every detail, it’s the feeling that stays there”.

Conferences offer a wealth of information, a medium to share research with others, and to network and build connections. Each experience of dementia is different but there are commonalities and things we can learn from when we put lots of data and information together. As stated by Pasha and Ruby “It is important to find an opportunity to keep going and get positively involved to not only help yourself but to help others. Breaking down the stigma takes different forms in different cultures; we need to face it head on to be able to deal with it”. Ruby stated “I saw my father and uncle living with dementia, saw them strive for everything without all the education, and he gave me so much courage that I can do it.

This conference was also attended by Gilbrea SHARE Dementia Group Member, person living with Dementia and advocate, Phyllis Fehr (and her husband Tom). Phyllis had this to say about the conference:

“It was such an awesome opportunity to attend the Alzheimer Europe conference last fall. A few of the highlights for me was meeting our small group from the Hamilton area there. Also, to meet people that I know and have worked with over the years in person. The next thing that excited me was hearing about all the work being done around the world. What is new, what is similar to work being done here and what is in the offing. The most exciting part for me was watching all the people who live with Alzheimer’s who attended, and how they engaged and participated. Truth be told I truly enjoyed watching Ruby and Pasha during this event. This was their first time attending and presenting at something so powerful and large. It was great seeing how others enjoyed their presentation. But the best part was when they got a shoutout in the closing ceremony.”

A big thank you to Ruby, Pasha and Phyllis for sharing their reflections and contributions to this blog post.

Pictured from left to right: Pasha, Phyllis, Tom, Ruby, Anthea