When I tell people I’m a dementia doula, I get a slightly puzzled look – and then a “a what?” And honestly? That response is exactly why I started talking about it. Because if the people I talk to haven’t heard of a dementia doula, chances are the families who need one haven’t either. And that’s a problem I want to help fix.
So let me explain.
The word doula comes from the Greek, meaning “a woman who serves.” In modern use, a doula is a trained, non-clinical support person who walks alongside someone during one of life’s most significant transitions. Most people know about birth doulas – trained supporters who help families through pregnancy and birth. End-of-life doulas do similar work at the other end of life, supporting people and their families through the dying process.
A dementia doula supports people living with dementia and their loved ones across the entire journey – from pre-diagnosis, right through to end-of-life and beyond.
What does a dementia doula actually do?
It’s really important to understand that a dementia doula is a non-clinical role, based on a compassionate model of care. A doula is not a nurse, a doctor, or a case manager. What we do provide is something the medical system rarely has time for – deep, compassionate, practical support for the whole family.
That might look like:
- Helping families understand what a diagnosis actually means and what to expect as things progress
- Navigating the aged care and support system, which can feel overwhelming and fragmented
- Supporting communication between the person living with dementia and their family
- Helping maintain meaningful connection as things change
- Providing emotional support – because dementia doesn’t just affect the person with the diagnosis, it affects everyone who loves them
- Preparing families for the changes ahead so nothing comes as a complete shock
- Supporting end-of-life care with the dignity and compassion every person deserves
Where did the role come from?
The dementia doula role was created by Wendy Hall (a registered nurse, paramedic, and dementia educator with over 25 years of experience), who saw firsthand the gap in support for families, particularly around end-of-life care. Wendy founded Dementia Doulas Australia and Dementia Doulas International to train dementia doulas across the country and around the world.
And the way I found her work….that’s a story in itself.
My sliding doors moment
Becoming a dementia doula was a complete sliding doors moment – and I have my friend and colleague Coral Wilkinson to thank for it.
A few years ago, I helped Coral launch her podcast, Your Aged Care Compass, and we continued working together from there. One day, I was sharing with Coral that I’d completed my end-of-life doula training in 2022 but was unsure what services to offer. I knew I wanted to do meaningful work supporting families through difficult times – I just hadn’t found the missing piece yet.
And that week, Coral was serendipitously interviewing Wendy Hall, the creator of the dementia doula role.
The moment Coral mentioned the words “dementia doula”, I instantly knew. That was exactly what I was going to do. I had signed up and started the Dementia Doulas International’s training program within five days.
Coral also introduced me to Cognitive Stimulation Therapy – an evidence-based program for people living with mild to moderate dementia – which led to a fun trip to Canberra together for facilitator training and their international conference. That turned out to be the other missing piece of the puzzle for my new direction.
Thanks Coral. 💕
Why this work is personal
I came to this work through lived experience as well as the sliding doors moment.
Dementia has touched my family more than once, and I know firsthand how confusing, isolating, and overwhelming it can feel. You love someone. You can see something is changing. And you have no idea what you’re looking at, what’s coming, or how to help.
That’s the experience I carry into every family I work with. And it’s why I’m so passionate about making sure no family has to figure this out alone.
What I want you to know
If someone you love has been diagnosed with dementia, or you’re quietly watching a parent and wondering if something’s wrong, you don’t have to figure this out alone.
A dementia doula won’t replace your doctor, your specialist, or your aged care team. But we can walk alongside you in a way the medical system simply doesn’t have the capacity to do. We can help you understand what’s happening, prepare for what’s coming, and find the right support at every stage of the journey.
If you’d like to learn more, I’d love for you to listen to Episode 1 of Dementia Unravelled – my podcast where I go deeper into what a dementia doula is and why this role exists. You can find it on Apple Podcasts, Spotify, or right here on my website.
And if you think a dementia doula might be what your family needs right now, I’d love to have a conversation. You can book an Enquiry Call with me through the link below.
