Palliative care is often misunderstood, especially when it comes to dementia and frailty. Many people fear that it represents the end, a giving up, or a step away from hope. But for Dr. Janie Wilson, a general practitioner with a special interest in palliative care, it represents something very different: dignity, comfort, and the chance to live meaningfully, even in life’s final stages.
Dr. Wilson’s work is deeply informed by her own life experience and her commitment to person-centred care. She believes that palliative care is not about losing hope but about shifting the focus to what matters most: quality of life, compassion, and presence. In this conversation, she shares what drew her to the field, how families can be supported through the complexities of dementia, and why difficult conversations can sometimes bring unexpected healing.
A personal journey into palliative care
“My interest in palliative care was born from a recognition that medicine isn’t just about curing, but also about caring — especially when cure is no longer possible. In 2019, my dad passed away after a palliative journey we went through as a family. He died in his own bed, at home, surrounded by his loved ones. It was one of the most profound moments of my life. Despite the pain of losing him, there was also a deep sense of peace — because he was cared for with dignity, and because we were supported throughout the process.
In working with patients with advanced dementia and frailty, I saw how profoundly quality of life could be improved, not always with aggressive treatments, but through comfort, presence, and dignity. That drew me into this field — the opportunity to bring relief, to affirm death as a natural process, and to support families through what can be one of the hardest journeys of their lives.”
Reframing what palliative care means
“I often start by reframing palliative care. It’s not about giving up — it’s about shifting the focus. Instead of fighting a losing battle with the disease, we focus on what matters most to the person and their families: comfort, dignity, and meaning.
I explain that palliative care is about living well even when time is limited. For dementia, especially in its advanced stages, it’s about addressing distress, minimising suffering, and helping both the person and their family feel supported — physically, emotionally, and spiritually. Once families understand that we are there to walk beside them, not ahead or behind, their fear often turns into relief.”
The challenges families face
“The most profound challenge is ambiguity — families often struggle with the slow, unpredictable decline and the feeling of losing their loved one gradually over time. There’s also guilt, uncertainty around decision-making, and a fear of letting go or failing their loved ones.
As healthcare professionals, we can ease this by being proactive in communication, offering clear explanations of what to expect, and helping families plan ahead. Just as importantly, we must validate their emotions and reassure them that choosing comfort and dignity is a courageous, loving decision — not a failure or abandonment.”
Compassion and dignity in practice
“In practice, person-centred care means we never lose sight of the individual behind the illness. Even when communication is lost, we honour the person’s values, preferences, and life story. We speak gently, maintain routines, ensure they’re not in pain, and protect their sense of self.
For caregivers, it means bearing witness to their experience — listening without judgement, offering respite, and helping them feel seen and supported. Small acts of kindness, a cup of tea, a phone call, or just sitting together in silence, can make a world of difference.”
Facing difficult conversations with care
“It starts with building trust. I try to meet families where they are emotionally, not just where they ‘should’ be. I use simple, honest language, and I give them space to express fear, grief, or even anger. I also make sure they know they’re not alone — that we’re a team.
I try to frame these conversations not as ‘bad news,’ but as opportunities to make meaningful choices together. When families feel heard, respected, and gently guided, those hard moments can become incredibly profound — sometimes even healing.”
Closing reflections
Dr. Janie Wilson’s words remind us that palliative care is not about endings but about presence, dignity, and love. For people living with dementia and their families, it is a chance to be supported through one of life’s hardest chapters with gentleness and humanity.
Her work shows that even when cure is no longer possible, care never ends and that, in itself, is a profound source of hope.
Livewell works closely with specialists like Dr Wilson to ensure we care for the whole family, not just loved ones diagnosed with dementia. If you have a loved one affected by dementia and are considering a specialised care facility, get in touch with us to discuss your needs.