When people hear “dementia,” many imagine a grandparent slowly losing memory in their later years. But dementia doesn’t always wait for old age. For some Australians – including Filipino-Australians – symptoms can appear as early as their 40s or even 30s.
To support those navigating this unexpected journey, Dementia Australia has launched a new Younger Onset Dementia Guide, a free, comprehensive resource for individuals under 65 living with the condition, along with their families and carers. The guide brings together practical advice, emotional support, and planning tools designed to meet the unique needs of those diagnosed earlier in life.
“Dementia can happen to anybody,” said Professor Tanya Buchanan, CEO of Dementia Australia. “It’s possible to develop symptoms in your 30s, 40s or 50s – that’s why age-appropriate resources and tailored support are so important.”
What makes younger onset dementia different
Younger onset dementia is any type of dementia that appears before age 65. Unlike older adults who may already be retired, younger people are often still raising children, building careers, or supporting elderly parents. For many Filipino-Australian families, where caring for loved ones is a shared responsibility, the diagnosis can disrupt not just one person’s life, but the entire household.
The new guide acknowledges these realities. It covers how the condition may affect work, parenting, finances, and personal identity – and offers ways to adapt while maintaining a sense of purpose and dignity.
It also stresses that symptoms aren’t always just about memory. Changes in thinking, behaviour, or personality may be early signs. For instance, someone might have trouble focusing at work, become more withdrawn, or struggle with everyday tasks that once felt simple.
The guide encourages families to seek medical advice early rather than assuming it’s just stress or ageing. Early diagnosis opens access to support services and helps with future planning.
‘It felt like an impossibly hard situation’
For Dementia Australia Ambassador Tully Smyth, whose mother Kay lived with younger onset dementia, the diagnosis turned life upside down.
“It felt like an impossibly hard situation with no clear way out, at least not for a very long time,” Ms Smyth shared.
Tully’s story echoes what many Filipino families might experience – the emotional toll of watching a loved one change, the exhaustion of balancing care with work, and the fear of an uncertain future.
The guide highlights personal stories like hers, reminding readers that they’re not alone. It also includes tips for maintaining emotional wellbeing, such as joining support groups, setting realistic expectations, and taking time for self-care – something many carers often neglect.
Understanding the impact on family life
Younger onset dementia affects more than just the person diagnosed. Spouses may find themselves becoming full-time carers, children may take on adult responsibilities, and financial strain can build up quickly.
The guide discusses practical strategies:
- Communicating with children about dementia in age-appropriate ways.
- Seeking workplace support, such as flexible hours or carer’s leave.
- Accessing financial help through My Aged Care, Centrelink, and the National Disability Insurance Scheme (NDIS).
- Planning ahead, including appointing powers of attorney and making future care decisions while the person can still participate.
For Filipino-Australian families, where caregiving is often viewed as a natural duty rather than a formal role, the guide offers a new perspective: accepting help is not a weakness – it’s part of caring wisely.
Breaking the stigma
Dementia can carry stigma, particularly in multicultural communities where it’s sometimes misunderstood as “just forgetfulness” or even a mental illness. Dementia Australia’s guide challenges these myths, encouraging open conversations and early medical intervention.
It also provides information in plain English and links to multilingual resources – a vital support for families more comfortable in languages other than English. While Filipino translations are not yet available, the guide’s approachable design and use of real-life examples make it easy to follow.
“We were proud to develop this guide in consultation with people living with younger onset dementia, their families and carers,” Professor Buchanan said.
Supported by community partners
The Insignia Community Foundation and Insignia Financial partnered with Dementia Australia to develop the inaugural guide.
“We see this guide as an essential tool for Australians, along with their families and carers,” said Angie Dickschen, Chair of the Insignia Community Foundation. “We want people to have the support they need to continue living their lives as well as possible – and to plan for the future.”
Their support reflects a growing awareness that dementia doesn’t discriminate by age or background – and that communities, including Filipino-Australians, benefit when information is shared widely and compassionately.
Hope, help, and connection
A diagnosis of younger onset dementia is life-changing – but it doesn’t erase a person’s identity or potential. The guide encourages individuals to stay connected, remain active, and continue engaging in meaningful activities.
It also highlights the importance of peer networks, such as Dementia Australia’s Younger Onset Dementia Hub, where people can share experiences and access resources tailored to their stage of life.
For Filipino-Australian families, staying socially connected – whether through community organisations, churches, or local groups – can be one of the most powerful forms of support.
Finding strength in understanding
The Younger Onset Dementia Guide is more than a booklet. It’s a roadmap through confusion, a voice of empathy, and a reminder that life doesn’t end with diagnosis – it simply changes.
As Ms Smyth reflected on her family’s journey:
“We learned to focus on the small good moments – laughter, connection, and care. They became our anchors.”
The Younger Onset Dementia Guide is available free in print and online at dementia.org.au/younger-onset-dementia-guide.
