A dementia diagnosis turns the world upside down. Plans must be scrapped and re-built, relationships come under strain and – often through a fog of grief and fear – the health and aged care system must be navigated, sometimes for the very first time. People (and their loved ones) confronting a future affected by cognitive impairment frequently report feeling alone and confused, floundering within a system full of roundabouts and dead ends.
Imagine the difference it makes when someone knowledgeable and compassionate is there to walk with them every step of the way.
‘That’s what a dementia doula does,’ explains Wendy Hall, managing director of Dementia Doulas International, which has been training people for the role since 2019. ‘We are there from pre-diagnosis through to the time of bereavement, preparing families for a better end-of-life experience.
‘Our role as dementia doulas is about helping families become part of the solution and play a more active role in decision making.’
Our role as dementia doulas is about helping families become part of the solution and play a more active role in decision making.
Wendy had worked in the health and aged care field extensively as a registered nurse, paramedic and dementia consultant, but became frustrated by what she felt the system lacked regarding consistency and ongoing support.
‘My experience was that, because of the long trajectory of dementia, you often have only one or two family members that are still involved after, say, 10 years,’ said Wendy. ‘They just get worn out. I thought we needed to reframe our approach.’
Eight years ago, she began thinking about the concept of end-of-life doulas, eventually adapting it into a dementia-specific role and then training others. Dementia Doulas International has now trained almost 90 doulas, who mostly operate their own private practices. They are making a life-changing difference for hundreds of families.
Wendy later set up Dementia Doulas Australia, a registered charity providing doulas for communities that sit outside of mainstream services.
She believes a key role of the doulas is to be initiators of brave conversations; the ones the family, in their heightened emotional state, may not want to start.
A key role of the doulas is to be initiators of brave conversations; the ones the family, in their heightened emotional state, may not want to start.
‘We plant seeds and keep the line of communication open,’ she said. ‘They are hard conversations but, by not having them, everything falls in a heap at the end. Families end up more distressed and the person potentially ends up either dying in hospital, where they don’t want to be, or alone in their bed in a care home, even though they're surrounded by a lot of people who have perhaps not recognised they’ve entered the end stage of their life.
‘That’s why it’s important that we have that ongoing relationship with our families. We're not part of their everyday, but we're there in the background for when they need us, which means we become that trusted presence.’
She adds that doulas aim to complement health and aged care professionals, as well existing support groups, partnering with other organisations and services rather than competing with them.
‘We fill a gap,’ she said. ‘We don't want to replicate or reinvent the wheel – we actually support health professionals and service providers, because we end up supporting families with all the stuff that sits outside the box. So we all do better, collectively.’
Wendy Hall is the author of Dementia Can’t Take Everything!, The Dementia Doula and Beyond the Darkness of Dementia. She will expand on the concept of dementia doulas and the challenges of navigating the palliative space in the Dying Well panel on Day 2 at #IDC2026, 4-5 June, at The Hilton Sydney. Don’t miss out – registrations are selling fast!