On 16 August 2019, I was diagnosed with young onset Alzheimer’s Dementia. Like so many people throughout the world, I walked away from that appointment with more questions than answers. I was uncertain about what the future would hold, not only for me, but also for my family and the life we had built together.

Over the years, I have come to realise that while dementia changes how you live your life, it does not take away your voice, your purpose, or your ability to contribute in a meaningful way.

Today, as both a person living with dementia and a Board member of Alzheimer's Disease International (ADI), I find myself not simply living with this uncertainty but helping to shape the global conversation around it.

Alzheimer's Disease International Global Conference

In April 2026, I had the privilege of attending the 37th ADI Global Conference in Lyon - one of the longest-running and most influential global forums on dementia.

The scale of the event was remarkable. Bringing together approximately 1,500 delegates from over 100 countries, the conference featured seven plenary sessions, 36 parallel sessions, hundreds of poster presentations, and a vibrant exhibition space.

The conference also welcomed global leaders and advocates, including Her Majesty Queen Sofia of Spain and Her Royal Highness Princess Muna Al-Hussein, reflecting the growing worldwide commitment to improving the lives of people living with dementia and those who walk alongside us.

To stand on that stage and deliver the first speech of the conference was a deeply personal and symbolic moment that reflected how far we have come in ensuring that people living with dementia are not just included in conversations but are helping to lead them.

– Bill Yeates

Listening to Lived Experience

One of the defining points of the ADI Global Conference was the genuine commitment to listening to the voices of people living with dementia.

To stand on that stage in Lyon on Day One and deliver the first speech of the conference was a deeply personal and symbolic moment that reflected how far we have come in ensuring that people living with dementia are not just included in conversations but are helping to lead them.

Alongside me were fellow advocates living with dementia – Robbie Dean, Natalie Ive, Brother John-Richard Pagan, Helen Rochford-Brennan, Audrey Ross, Laurie Waters, Billy Widers, and Shinobu Yamanaka - each sharing different parts of their own dementia journey.

As always, lived experience grounded the conference and kept the focus on what truly matters: the reality of being able to live a life after diagnosis. When I spoke about the uncertainty that often accompanies a diagnosis of dementia, I could feel a genuine connection in the room.

It was more than sympathy as there was a shared understanding of the emotional impact this condition can have. There was also a deep sense of respect and openness displayed by everyone throughout the conference.

As one attendee. Elaine Mateus  the President of Febraz, shared in a LinkedIn post: “The greatest wealth of being here is listening to people give voice to their own stories… they remind us why we do what we do.” Brother John – Richard captured this perfectly when he stated: “We are not just asking for change, we are leading it.”

Key reflections from the 2026 ADI Global Conference

On the final day of the ADI Global Conference, I was given the opportunity to participate in an open discussion with the audience.

My thanks to Patricia Saletti for chairing this session so thoughtfully. It gave me the opportunity to speak honestly about what it is like to live with dementia - the emotions, the challenges, the fears, and the ongoing need to adapt.

Most importantly, it allowed me to speak in my own voice, sharing my thoughts and feelings in a way that was authentic to me, rather than having others speak on my behalf.

After taking time to reflect, the following key insights have stayed with me:

1. Lived experience needs to lead, not follow.  If meaningful change is to occur, then involving people living with dementia in conversation is only the first step. They also need to be actively involved in shaping decisions that affect their lives.
2. An integrated approach is needed. As dementia affects every aspect of a person’s life, the biomedical and psychosocial approach need to be integrated to create a more holistic person-centred approach to care.
3. Bridge the gap. While many countries have national dementia plans, an emerging challenge lies in whether these plans are being translated into meaningful, everyday support for people living with dementia.
4. Risk reduction is real. The evidence is growing: up to 45% of dementia cases may be linked to modifiable risk factors. We need to better educate the world that making changes in your midlife can have a meaningful impact as you grow older.
5. Medical advances are happening. As new diagnostic tools are creating exciting opportunities to identify changes in the brain much earlier. We need to prepare ourselves so that we can maximise the impact of these new advances.
6. Collaboration is our greatest strength. When people from across the world, come together to share their knowledge, insights and innovations, then real progress can be made.
7. Just keep Swimming. In order to adapt to the progressive nature of dementia, this phrase (given to me by a past student, Alison) is a constant reminder that you need to have resilience, a ‘never give up attitude’, despite the difficult days that lie ahead.

As noted in a related LinkedIn post shared by ADI, "Sessions like this highlight the importance of amplifying the voices of people living with dementia and their carers. These perspectives foster deeper empathy and understanding, while also inspiring meaningful action".

An opportunity to rekindle friendships

Attending the ADI Global Conference in Lyon provided me with my first opportunity to rekindle important friendships that I have made.

In 2024 I participated in the Walking the Talk for Dementia in 2024. This was a truly ‘transformative’ experience being one of 80 people from 15 different nationalities to walk part of the Camino de Santiago de Compostella, followed by a 2-day symposium. For the first time since my diagnosis, I felt that I truly belonged. I was surrounded by a group of people who didn’t define me by my diagnosis - they saw and treated me as a person. A human being just like themselves.

Attending the ADI Global Conference in Lyon, provided me with my first opportunity to rekindle all the friendships that I had made on that walk. Alumni from 2023, 2024 and 2025 WTD programs, together with board members and friends, came together for an evening of connection and reconnection, co-hosted with Global Brain Health Institute. Despite coming from many different countries, backgrounds, and experiences, it felt effortless – for me, it was like continuing a conversation that had never really ended.

What makes this community so special is the genuine sense of belonging it creates. There is no hierarchy, no judgement, and no sense that one person’s voice matters more than another’s. Instead, there is mutual respect, shared purpose, kindness and genuine human connection.

To our wider Walking the Talk for Dementia family, thank you. Together, we are doing more than sharing stories. We are helping to challenge stigma, reshape perceptions, and demonstrating what it means to walk alongside someone living with dementia in a truly dementia friendly and inclusive community.

As founder of this initiative, Fernando Perez you must be very proud of the momentum this initiative is gaining throughout the world.

Lorenzo’s House

Being diagnosed with young onset dementia at the age of 59, with three children all under the age of 25, has given me a deep personal understanding of how this condition impacts not just on the individual, but your entire family. It is for this reason that the work of Lorenzo’s House resonates so strongly with me, as they are filling a critical gap by supporting children and young people who have a parent living with young onset dementia.

As an organization that is bringing so much innovation to young onset dementia. Lorenzo’s House advocacy movement, NEXTGEN, is helping to build a global movement of sons, daughters and children impacted by young onset dementia and allies committed to raising awareness, ending stigma and advocating for dementia justice.

My thanks to Dr Katya Numbers (researcher from UNSW) for allowing me to Co-chair a session which was specifically centred on this topic. It was also a real pleasure to catch up with two alumni from the 2024 WTD, Grania McKillick and Will Dean who are doing great work in this space for Lorenzo’s House.

Diana Shulla Cose, founder of Lorenzo's House and Patti LaFleur, Lorenzo's House installation at ADI 2026. Photo: ADI 2026

From strength to strength

The ADI Global Conference also marked a significant moment—the retirement of its long-serving CEO, Paola Barbarino.

Over the past nine years, Paola’s leadership has helped shape not only ADI and its 105 member organisations but also the global dementia movement itself. Her passion, clarity of vision, and unwavering commitment to improving the lives of people living with dementia have left a lasting impact on countless individuals and communities around the world.

In her farewell speech, what stood out most to me was Paola’s powerful message about building systems, that one day, will no longer need ADI. To me, that represents true leadership – bringing about change that is sustainable, that empowers organizations and countries to stand on their own and place people living with dementia at the centre of everything they do.

As someone living with dementia, I have personally seen the importance of that vision reflected in the way ADI has evolved under Paola’s leadership. She has worked to create spaces where the voices of people living with dementia are not only heard, but genuinely valued and respected.

 A place to renew hope

As I reflect on my time in Lyon, I can honestly say that I am leaving with a renewed sense of purpose and hope.

Over three days, I connected with an extraordinary range of people - individuals living with dementia, care partners, researchers, clinicians, innovators, policymakers, and global leaders. Each conversation sparked new insights and a renewed sense of ‘hope’ that meaningful progress is being made to help people living with dementia lead better lives. I was particularly inspired by innovative projects and a range of collaborations emerging across the world such as ADI Atlas, WW – FINGERS, SPICE, iCOPE and AD – RIDDLE.

A heartfelt thank you to all the volunteers from Alzheimer France whose level of professionalism, warmth, and generosity of their time over the 3 days made this conference a memorable experience for all of the participants.

Finally, my thanks to the leadership shown by Paola and the team at ADI led by Jane Ziborra, for organising such an amazing conference. Having attended London in 2022, Krakow in 2024 and now Lyon in 2026, I am very much looking forward to 2028 when ADI will hold its 38^th Global Conference in New Delhi, India from March 8 to 10, 2028.