Dementia planning should begin before a family reaches crisis point
By Tina Hogarth-Clarke
CEO Balwyn Evergreen Centre
When we talk about dementia, we often begin at the point of diagnosis. We discuss medical appointments, care arrangements, legal decisions and the support a family may eventually need. All are important conversations, however after many years working with older Victorians, I believe we are beginning too late.
The most effective dementia planning can start years before a diagnosis, around a kitchen table, in a community centre or during an honest conversation about how we hope to live as we grow older. It starts by building the relationships, routines and local connections that can help sustain a person if their memory, confidence or independence begins to change.
That idea may challenge the way we think about dementia support. We tend to invest most heavily when somebody’s needs have become urgent, while the everyday community infrastructure that may help delay isolation and ease pressure on families can still be treated as an optional extra.
A weekly exercise class, shared lunch or familiar conversation may appear modest beside clinical care. In practice, these experiences can become part of the scaffolding that holds a person’s life together.
The cost of waiting for a crisis
Dementia Action Week, which runs from 21 to 27 September, carries the 2026 theme, It’s time to talk about dementia. The timing is important. Dementia is now Australia’s leading cause of death, and an estimated 446,500 Australians are living with the condition, while 1.7 million people are involved in their care.
Yet many families remain hesitant to begin the conversation. Some fear upsetting an older parent. Others worry that raising memory changes will sound accusatory or signal a loss of independence. For the person experiencing those changes, silence may feel safer than acknowledging something uncertain.
The result can be a long period in which everybody senses that life is changing, however nobody knows how to speak about it. Valuable opportunities to seek advice, strengthen support networks and understand the person’s wishes may be lost.
We need to make these conversations feel less confronting by placing them within a broader discussion about ageing well. Asking someone what helps them feel connected, which routines give their week purpose and who they trust to support future decisions can be a gentler place to begin than waiting until a problem demands an immediate response.
Future planning should preserve a person’s voice rather than anticipate its disappearance.
Community belongs in the care conversation
At Balwyn Evergreen Centre, a not-for-profit community centre established in 1958, we see the value of early connection every day. Older people come through our doors to exercise, learn, share meals, join conversations and remain part of the community around them.
Our Supported Lifestyle Program assists people living at home with progressive cognitive decline or mild to moderate dementia. With dementia-trained staff, volunteers, meals, activities and transport support, it offers participants a welcoming place to spend the day while giving carers valuable time to attend to work, appointments, rest or other responsibilities.
The program is structured around the individual rather than the diagnosis. A person may need assistance, however they still bring humour, preferences, memories, skills and a desire to contribute. Good support recognises all of those things.
These experiences have reinforced something I have come to believe deeply: belonging should be considered part of dementia care, not an incidental benefit surrounding it.
We should plan for a meaningful life
Much of our public discussion focuses understandably on safety. Families worry about falls, driving, medication, getting lost and whether somebody can continue living at home. These concerns are real, however safety cannot become the only measure of a good life.
A person can be physically protected and still become profoundly isolated. We should be asking a wider set of questions. Does this person still have somewhere they are expected each week? Are they able to make choices?
Can they continue contributing in ways that feel familiar and worthwhile? Does their carer have enough support to sustain the relationship they share, rather than becoming exhausted by the responsibilities that now surround it?
This is where community organisations have an essential role. They can notice gradual changes, help families find support earlier and offer continuity at a time when much else may feel uncertain. Familiar faces and routines can provide reassurance without making every interaction about dementia.
A conversation should lead somewhere
Awareness weeks can encourage people to speak, however the next step is equally important. A conversation about dementia should lead to practical action, whether that means visiting a GP, discussing future wishes, learning what local support exists or helping somebody remain involved in a community they know.
For families, the first step does not need to be dramatic. It may be asking an older relative what they value most about their week. It may be visiting a community centre together before support becomes urgent. It may be making sure the person who gives care has people around them too.
Dementia will touch a growing number of Australian families, however fear and isolation do not have to define the experience. If we begin earlier, listen carefully and treat connection as part of our care infrastructure, we can create a future in which people living with dementia remain visible, valued and involved.
The conversation matters. What we build around it will determine whether it truly changes a life.
