My mother is 79 years old and has a diagnosis of mixed dementia. Since June 2024, I have been a member of the European Dementia Carers Working Group (EDCWG), representing Türkiye and I also serve as a Board Member of the Turkish Alzheimer Association. As well as these roles, I am delighted to be part of a psychoeducation-based psychological support and telerehabilitation group, having joined in April 2023. This group was founded by Prof. Dr İdil Arasan Doğan, a Board Member of our Kadıköy Branch.
Today, our group brings together 32 family carers. We support each other on many issues, ranging from behavioural problems to feeding methods, and sometimes simply sharing our feelings or asking one another for prayers. We began with weekly Zoom meetings and now continue our journey through WhatsApp and phone conversations.
Recently, I had the opportunity to speak at two events: the press conference organised by our Association on 16 September 2025, and an event at Üsküdar University on 21 September. While preparing my talk, I asked my fellow support group members: “What do you think are our most urgent needs?” Both in the press release and in my 15-minute speech, I was able to present our key demands:
- Greater understanding and support for family carers during healthcare processes (hospital visits, admissions, etc.)
- Improved procedures for issuing disability reports specifically for people with Alzheimer’s
- An increase in the number of day care and living centres,
- Establishment of a 24/7 emergency psychological support hotline
- Monitoring and quality improvement of private care homes
- Development of special transportation and care projects for people with Alzheimer’s
- Raising public awareness of Alzheimer’s, with educational programmes in schools and institutions, and tailored training for certain professional groups.
At the event, 80% of participants were either people with Alzheimer’s or family carers. The fact that we constantly face difficult decisions resonated deeply with many. Some attendees even shared their own experiences afterward. Hearing subsequent speakers refer to points from my talk made me feel that our voices were truly being heard. Before closing my speech, I also touched upon the Alzheimer’s perspective in the European Union (EU). Thanks to my participation in EDCWG meetings, I observed that early diagnosis is much more of a priority in the EU.
The aim, there, is to diagnose the disease early and preserve patients’ independence for as long as possible. With the support of sensors, GSM technologies, and various rehabilitation methods, they seek to extend the period during which patients can live independently in their own homes. In fact, the focus of Alzheimer Europe’s 2025 Yearbook, which I briefly mentioned, reflects this vision: transportation, access to cultural life, recreation, leisure, and sport. The EU’s ultimate goal is maximising the independence of people with Alzheimer’s. I sincerely hope this vision can serve as an inspiration for Türkiye.