This report was written by Carmen Elise Pocknell, a student from University College Cork, with comments from Carmel Geoghegan: On Wednesday, September 18th, I was fortunate enough to participate in an event co-chaired by the remarkable Carmel Geoghegan from Dementia Ireland and the diligent Janie Lazar from End of Life Ireland. We gathered in the intimate Studio Theatre at the Lexicon Library and Cultural Centre in Dun Laoghaire, by the wonderful seaside in Ireland. The venue perfectly facilitated a deep exploration of the challenging realities many face during difficult life moments.
Canadian, Jule Briese shared her deeply impactful journey she experienced alongside her husband, Wayne Briese, shedding light on the significance of Assisted Death for their family and the influence of legislation on those living with dementia. The grace and serenity with which Jule shared her story felt like a privilege in itself. She also introduced us to the one-act play “Ten Minutes to Midnight,” which allowed audience members from diverse backgrounds to grasp the complexities involved in navigating such significant experiences and highlighted the critical importance of communication. What resonated with me most was the profound exchange of hopes and desires regarding assisted dying. The conversation was infused with remarkable compassion, empathy, and goodwill from both partners, highlighting the beauty of their bond and the importance of such meaningful discussions.
As a neuroscientist focused on reminiscence therapy in my doctoral studies and a contributor to the ‘In-Touch’ Horizon Europe trial, where we provide sensory activities for individuals with advanced dementia, I often reflect on the essential role of connection. A person-centred approach and environment during these moments are essential. While I recognise the profound structural changes the brain undergoes in late-stage dementia, this in no way diminishes the essence of the individual within. It is the simple, heartfelt interactions that continue to hold transformative power. However, it is only through direct observation that one truly grasps the importance of honouring each unique individual, understanding their history, and recognising how it shapes their present choices. Jule and Wayne exemplified this beautifully, embracing a deep bond (see photos). Their love, the tranquillity they provided for one another, and their ability to make decisions together up until the end serve as a powerful reminder to cherish the moments we have. As a young neuroscientist immersed in the study of dementia, I find it essential to reflect on the myriad dimensions of these experiences.
Dementia can touch the lives of individuals at any stage of life, and it is vital that we honour the autonomy to navigate our own paths. Understanding the choices available to us, while also considering the wishes and needs of those we care about, is fundamental. Furthermore, the role of support and structured guidance in this journey cannot be overstated; they can truly make a difference in how we approach these complex situations. For a deeper understanding, I highly recommend reading Jule Briese’s book, "Shared Conversations – Glimpses into Alzheimer’s."
To conclude, I want to share a resonant quote by Wayne Briese that will remain with me throughout my professional journey: “Quality time is more important than time; life needs to be meaningful, not just a series of existences.” We must strive to be better at supporting one another, take the time to truly understand each individual’s unique journey, and foster connections not just in greetings, but also in farewells. Thank you, Jule and Wayne, for graciously inviting us into your beautiful world and demonstrating what true love means. Thank you, Jule, for your strength, kindness, and honesty. I also extend my gratitude to the organisers for making this event possible and for driving change. Lastly, thank you to the wonderful audience members who shared their stories, enriching the experience for all. It’s vital that we engage in these conversations, and I remain hopeful for the future. Carmel, as Founder of Dementia Ireland noted that "the reasoning was always about getting all the information out there, no gatekeeping, we are obliged to get the full account to the public and let individuals choose for themselves, It is all about CHOICE." She also commented that End of Life Ireland are a very open and diverse group of individuals who are opening up the conversation in Ireland and "working hard to get a choice for those who wish to avail of assisting dying. We know many travel abroad to avail of this and at the moment the only other option here is suicide."