How can we create more awareness? By picking up the microphone ourselves? Why not. Because there is still so much to share about Alzheimer’s and young-onset dementia, I regularly try to take the microphone in hand. Our society, healthcare providers, and policymakers still lack sufficient knowledge about (young-onset) dementia, how it creeps into lives, and the significant needs that must be addressed to tackle everything differently. I am happy to contribute my part. Wherever possible, I share our story—how difficult it was during the first months, how little information was available, and how we had to search for answers ourselves. Our journey toward finding life after the diagnosis.
Over the past year, my husband Geert, who has Alzheimer’s and young-onset dementia, and I have welcomed various opportunities to participate in lectures, study days, film screenings, video messages, and more. I would like to highlight a few of these occasions, where we always received particularly warm and positive reactions: I was a panellist during a webinar by Cera titled "Finding, seeking, receiving, giving meaning… with dementia." Diverse questions were addressed from different perspectives. What makes people with dementia happy? What do they enjoy? How do they give meaning to their lives with dementia? Seeking meaning and giving purpose to life is universal yet highly unique. As a caregiver, I spoke about our story of young-onset dementia and how we give meaningful and purposeful shape to it. Because it is so important to share our experiences of living with young-onset dementia with professionals in the field, and because they may learn from them, we gladly contributed to the study morning “Loss and grief in collaboration with dementia.” Geert and I shared real-life insights through an interview conducted by Herman Wauters from the Flemish Dementia Expertise Centre.
We received many kind words afterward. In preparation for World Alzheimer’s Day on 21 September, Geert and I were interviewed by radio host Arno. Part of the interview took place while running, as Geert is still very physically active and regularly runs marathons. They wanted to highlight this in the broadcast. On this special day, radio station Klara (classical music) dedicated a full-day programme to dementia, featuring our testimony, stories about dementia, caregivers, and specialists. Listeners could request songs with special meaning for someone with dementia. Earlier last year, I contributed to a video message "Straight to the Heart of the Matter, Without Frills", the essence of ten video messages we created as part of the Flemish working group of caregivers for people with dementia, supported by Alzheimer Liga Vlaanderen (the Flemish Alzheimer’s Association). This was in preparation for the local elections in Belgium on 13 October.
My message, as someone with lived experience, was: “Only by listening to us as caregivers and actively involving us in policymaking can we improve care and support for people with dementia together.” Very recently, we were invited by Cinema ZED to introduce the film “Human Forever” as special guests during their film festival Ciné Solidair, thereby giving a face and voice to (young-onset) dementia. The turnout for Human Forever was heart-warming—a film by Teun Toebes that is inspiring and moving, challenging all of us to view dementia differently and calling for love for our fellow human beings. Here too, we received tremendously positive responses for sharing our story and putting a face to the often-confronting reality of dementia. In 2025, I will continue to use my voice and strive to make a difference.
Pictured: Annick and Geert introduce the film “Human Forever” as special guests of Cinema ZED during the film festival Ciné Solidair