My husband Geert, who lives with young-onset dementia, and I are determined to advocate for better help and support for everyone affected by (young-onset) dementia. We do this by focusing on the glass half full, rather than half empty, but the journey after diagnosis remains one of overcoming obstacles and learning to cope with loss. I had the opportunity to passionately and convincingly speak about my commitment to breaking the taboo that still surrounds (young-onset) dementia, the difficult road after diagnosis, and the urgent need for a decisive policy that provides caregivers with the support they deserve, during an interview with Olivier Constant from the Alzheimer Liga Vlaanderen. The interview appeared in this autumn's edition of their magazine. I would like to share a part of it with you:
You witnessed the beginning of the ‘Flemish Working Group for Caregivers of People with Dementia,’ established in June last year by Alzheimer Liga Vlaanderen. How do you reflect on the first year of the working group?
When I attended the inaugural meeting in June 2023, I didn’t have a clear idea of what to expect. That changed quickly as everyone began discussing the needs that arise after a (young-onset) dementia diagnosis. Each member of the group shared the challenges they faced and what could be improved. We brainstormed potential solutions and how things could be better. As people with this experience, we were given the chance to make our voices heard. Alzheimer Liga Vlaanderen translated these needs into a comprehensive file, from which a memorandum and later a basic manifesto were drafted. In the past few months, we’ve been able to present this to our policymakers. First-hand information, clearly formulated needs, and calls for action made this a fruitful year.
With the manifesto ‘We Don’t Just Want to Survive, We Want to Live,’ you recently made a clear appeal to policymakers. What are the most pressing challenges that, in your opinion, need urgent attention?
When my husband was diagnosed with young-onset dementia, we were told that there is no cure. Medication was prescribed to slow the disease’s progression, and we were referred to our general practioner. That was it. Medically, everything was clear, but the question remained: what now? This turned out to be an experience shared by many members of the working group. As caregivers, we had to immediately take matters into our own hands and arrange everything for our partners from the day of diagnosis. A dynamic care plan and a case manager are indispensable in this situation. Personally, I found my way through various websites. You read that right: I had to actively search and piece everything together myself. Gathering information, repeatedly proving my husband’s illness, and dealing with unnecessary paperwork, all while my partner needed me the most. A person with (young-onset) dementia still has a life, but can no longer live it independently. As a caregiver, you take over what your partner can no longer do. You take control of their life. But in addition to taking over various tasks, you also want to ensure that their cognitive reserves are not depleted. You spend time maintaining social connections, staying active and creative, and engaging in enjoyable activities to fill the days. In short, everything to keep the brain stimulated, while also cherishing the time you still have together.
What motivated you to join the ‘European Dementia Carers Working Group’ of Alzheimer Europe, and what plans are in place for the near future?
As a member of the ‘Flemish Working Group for Caregivers of People with Dementia’ and the partner of someone with young-onset dementia, I want to share my experiences and knowledge and collaborate with others internationally to find solutions. At the same time, I want to bring this knowledge back to the Flemish working group. My involvement with this group comes from a sincere desire to help others and advocate for the needs of caregivers like myself. Through my personal experiences and professional background, I believe I can offer a valuable perspective and contribute to identifying the practical barriers and the support we need on a daily basis. Together, I hope we can make a difference in the lives of those affected by dementia and their loved ones.
If you could share one important message with the reader based on all your experiences, what would it be?
Don’t put off until tomorrow what may no longer be possible then. Enjoy what is still possible today. Focusing only on what cannot be done will only lead to negativity. Do fun things and make the most of the situation. To our policymakers: A care tsunami is coming, and the system is already under pressure. Invest in the many caregivers and ensure a solid financial and support framework for those diagnosed with dementia. Prioritize awareness around (young-onset) dementia. Invest in prevention, as a healthy and active lifestyle has a significant positive impact on dementia.