Bali Conference Reflections

Travelling halfway across the world with young-onset dementia takes a fair bit of planning, a pocketful of sensory strategies, and a solid dose of good humour. Flying out to Bali via Shanghai in September this year for the 2nd International Dementia Innovation Conference felt ambitious, but the moment Pam and I arrived, every mile of the journey made absolute sense.

This wasn’t an ordinary medical seminar-type conference where professionals talk over our heads about deficit models. It was a genuine meeting of minds, grounded entirely in what happens when you treat people living with dementia as experts in our own lives.

A Place Designed for Real Living: Aashaya Jasri Resort

During our stay, we were based at the Aashaya Jasri Resort on Bali’s east coast. For anyone who has made it through the institutional coldness of typical respite or care facilities, Jasri is a breath of fresh sea air.

The resort strips away clinical clutter and replaces it with calm, dignified space: lush gardens, peaceful corners to decompress, and an atmosphere built around independence rather than restriction. You aren’t treated like a condition on a chart; you’re simply an honoured guest.

A setting that respects sensory balance makes an enormous difference to mental clarity, especially when you’re preparing to speak on an international stage.

Insights from an International Stage

The conference brought together a remarkable lineup of international voices, each tackling dementia support from unique cultural and practical angles:

• Michael Verde (USA): Led an immersive opening workshop with Memory Bridge, exploring how deep, empathetic communication builds true human connection even if words fail. The late, great Tom Kiwood was referenced often, and we were reminded that his work continues to be relevant today.
  

• Adjunct Professor Rodney Jilek (Australia): Delivered the inaugural Bobby Redman Oration on “The Individuality of the Human Experience”, setting the spirit for human rights and individual dignity in care.

  The perfect, energising introduction to the days of conference to follow.
  

• Dr Cecilia (Woen Min) Chan (Malaysia): Shared the inspiring story of The Forgotten Mutiara, a community café designed to build bridges and break down isolation. A really successful and joyous model we can all learn from; last week, I was invited to speak on a webinar with some of the wonderful Malaysian people who attend.
  

• Shane Roulston (Australia): Showcased Neurons VR, an innovative virtual reality technology that supports movement and works to reduce restrictive practices and psychotropic medications. As a Tech Lover, I was intrigued and delighted by the range of possibilities for reminiscence and mobility training that this technology promises and is delivering.
  

• Maria Cynthia Funk (Philippines): Discussed Kapwaspasyo, focusing on the architectural and cultural design of shared memory spaces in Southeast Asian communities. I took frantic notes, and I’m thinking about how we might replicate some of her great work in our diverse multicultural communities here in the UK.
  

• Lesley Fox and Maria Almeida (Australia): Ran a creative workshop on Creative Joy, using mindfulness and therapeutic art to nurture emotional wellbeing for both individuals and care partners.

  
  

  Joy is SO important in our lives, and creative activities provide it in bucket-loads. Together we created a wonderful memory tree to celebrate our participation at the conference.

• Danny and Joan Murphy (Scotland): Delivered a keynote address sharing their journey with Danny’s Alzheimer’s, showing how authentic partnership challenges stigma on the national stage.

  What a team!

  Their presentation was warm and authentic, and really struck a chord with Pam and me.
  

• Muthoni (Gladys) Gitau (Kenya): Examined the real-world wellbeing and burdens faced by family care partners in Kenya.

  Another eye-opening and informative presentation that highlighted the cultural barriers that still need to be torn down if we are to remove the stigma that is still so often attached to dementia.
  

• Leah Bisiani (Australia): Challenged delegates to “turn the world on its axis”, arguing that only the direct perspective of the person living with dementia can illuminate proper care.

  Wow! A whirlwind of passion and common sense.

  Leah is TOTALLY fearless and a ruthlessly plain speaker, for whom I have great admiration and respect.
  

• Sophie Doyle (Australia): Addressed the crucial practical topic of the “window of opportunity” for managing financial decisions right at the point of diagnosis. So much needless misery results from people prevaricating about financial decisions instead of getting things sorted.
  

• Norminda Forteza (Australia): Explored intergenerational care dynamics with her presentation on young Filipino carers bonding with their Lola (grandmother).

  A moving presentation with lovely, warmhearted videos, and the presenters’ costumes were truly magnificent.
  

• Alzheimers Dementia Namibia: Screened African Witchfinder, an eye-opening short film following Pastor Berrie Holtzhausen’s work protecting vulnerable people with dementia from harm and witchcraft accusations.

  I was moved to tears by the plight of the people we saw, but uplifted by the progress being made.
  

• Professor Celia Harris (Australia): Spoke on “Beyond Loss”, looking at personhood, memory, and everyday social connection. Celia’s words struck a chord with me straight away. She explained how cognitive science can provide insights that help us communicate better and unlock memories for reminiscence and therapy.
  

• Dr Mary Njoki (Kenya & Scotland): Addressed care in the absence of formal support systems, highlighting family inventiveness and participatory innovation in Kenya.

  Mary reminded us once again that people will rise to challenges with resolution and innovation - an uplifting and really interesting talk.
  

• Alicia Fox (Australia): Reflected on how personal life experience directly shapes compassionate practice in aged care.

  So moving. It takes great courage to stand at a lectern and bare your soul about a personal tragedy, but it takes even more pluck to salvage such hope from the ashes of despair and move on while still respecting and cherishing what you have lost takes even more pluck. Thank you.
  

• William ‘Bill’ Yeates (Australia): Delivered the final lived-experience keynote, closing the conference with an inspiring message of positivity, resilience, and living well. The work Bill is doing to bust the myths around dementia is a powerful example to us all.

  Bill doesn’t just “talk the talk”; he “walks the walk”, and he fearlessly offers himself up to research as a “guinea pig”.

As a lived experience keynote speaker, I shared my perspective on moving from person-centred to person-led care. It’s about asking “What matters to you?” rather than just “What’s the matter with you?”

I spoke about how keeping the person in the driver’s seat protects our identity and purpose.

Added Bonuses!

The conference was designed to balance a busy schedule with ample time to decompress and enjoy Bali’s sights and sounds.

We visited the Tirta Gangga Water Temple, Sunset Beach, and Virgin Beach, and on our last day we participated in the 2nd World Dementia Walk - Bali, an international event raising dementia awareness in over 40 countries across the globe in conjunction with the Global Purple Angels Alliance. I confess, I wasn’t at all “match fit” and only completed a few kilometres, but I’ll never forget the experience.

We forged friendships that will endure forever and were in the company of heroes.

So inspiring!

Heartfelt Thanks to Our Hosts

An event of this scale doesn’t just happen by chance. My sincere gratitude goes to Dr Rodney Jilek, his wife Sarah, and their dedicated team.

Rodney and Sarah didn’t just organise a conference; they created a welcoming community. Their hospitality made Pam and me feel completely supported from start to finish. Behind the scenes, the local staff at Jasri worked quietly and tirelessly, ensuring everything ran without friction and always greeting us with sincere warmth.

Returning home to Northamptonshire, I carry fresh perspectives and renewed momentum.

Dementia changes how you get through the day, but when environments are built with insight, and when communities listen to lived experience, the world opens right back up.

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