Dementia Action Week takes place this week, from 15 to 21 September. This year’s theme, ‘Nobody can do it alone,’ highlights something we at Preparing the Way know to be true: dementia impacts not only the person living with the condition, but also their families, friends, and the wider community.
End of life doulas are uniquely positioned to offer support in this space. Our role is not clinical. Instead, we accompany people through the uncertainty of dementia’s progression, helping them and those close to them navigate the emotional, relational, and practical changes it brings.
Why end of life doulas matter in dementia care
Dementia is not a regular part of ageing. It’s a complex brain condition that affects memory, communication, and identity in ways that shift over time. For families and caregivers, this can mean living with ongoing uncertainty, anticipatory grief, and difficult decisions about care and support.
Wendy Hall, Managing Director of Dementia Doulas International, reflects on the depth of this need:
“My experience as a specialty Dementia Doula has shown me how much families and individuals crave support that recognises the whole journey of dementia, not just the medical pieces. Dementia brings unique challenges; its progression is uncertain, identity shifts slowly, and grief begins long before the end of life. Yet within these challenges lies an opportunity: to walk alongside people in ways that honour who they are and the relationships that matter most.”
Wendy reminds us that doulas are not there to “fix.” Instead, we hold space for people to share their stories, values, and choices, and we help ease the weight of isolation by validating invisible grief and encouraging gentle planning.
Learning how to better support people living with dementia
Every person’s experience of dementia is unique. For doulas, the most effective support often begins with listening, not just to the person themselves, but also to those who know them best.
Donna Elms, a nurse and end of life doula, explains that gathering information about a person’s life story is key.
“Having as much information as possible about your person through different times in their lives … sometimes the big things, but often little things that only the family know, can be invaluable.”
These details — a favourite scarf, a familiar song, or the memory of a cherished routine — can provide comfort when words and logic no longer do. They give doulas practical tools for creating connections and easing distress.
Donna also highlights the importance of pacing support:
“When commencing the supporting role perhaps shorter periods with your person to start with but making those interactions routine for them. The same day, time and setting, if possible, could in some cases be easier for the person with dementia. But, as we know, this being a new routine for your person is not always going to be what they will remember, unless you can maybe tie it to a familiar situation from an earlier time in their life that is in their memory bank.”
Consistency, patience, and flexibility all matter. What works one day may not work the next, and doulas need to be prepared to adapt.
Donna recalls supporting a woman in a nursing home who would often wait for her late husband to collect her for dinner. Staff never knew whether the day would bring calm acceptance, fresh grief, or anger. The role of the care team was to respond with compassion each time, finding ways to reassure her without judgment.
For doulas, these experiences underline the need to:
- Learn from families and friends about a person’s life history
- Use familiar routines or objects as anchors for comfort
- Start small and build trust gradually
- Be flexible and responsive, recognising that needs and emotions may change daily
These approaches help doulas provide support that is not only compassionate but also tailored to the unique rhythms of each person’s journey with dementia.
Unique challenges and opportunities
Supporting people with dementia asks doulas to balance safety with autonomy, and to recognise when to step forward and when to simply ensure a person is safe. Challenges can include unpredictable behaviours, navigating family dynamics, and managing the emotional toll of repetitive grief.
At the same time, there are profound opportunities. Doulas witness and record meaningful moments, validate experiences of loss, and offer companionship that reduces fear and isolation. We create spaces where people feel seen as themselves, not defined solely by dementia.
Get involved this Dementia Action Week
Nobody can do it alone. Dementia Action Week is an opportunity for everyone to learn more, connect, and support individuals living with dementia. You can:
- Explore resources and tips through Dementia Australia
- Attend or host a Dementia Action Week event
- Share information to help reduce stigma and increase awareness
At Preparing the Way, we are committed to equipping doulas with the skills to support people and families living with dementia. Our training explores the emotional, spiritual, and practical dimensions of end of life care, including resources relating to the unique needs of individuals navigating dementia.
Dementia affects us all. By becoming better informed and by strengthening networks of support, we can ensure that no one faces the journey alone.