“Dementia is the only disease where you’re not supported to fight for your life.”

For many in the Hawkesbury, dementia is no longer an abstract concept it is something felt within families, friendship circles, and across our community. With dementia now the second leading cause of death in Australia (and the leading cause among women), it is clear that this is an issue we cannot ignore.

But while much of the conversation around dementia focuses on decline, advocates are changing that narrative by giving people living with dementia themselves the strongest voice through Dementia Alliance International.

Founded in 2014 by Australian advocate Kate Swaffer is the world’s only organisation of, by, and for people with dementia. Membership is exclusively for those with a confirmed diagnosis, meaning the voices heard are those living the experience daily. Their mission is simple but powerful: to uphold dignity, empower individuals, and tackle the stigma and discrimination that still surround dementia.

As Swaffer herself has said, dementia is “the only disease where you’re not supported to fight for your life.” She insisting that people with dementia deserve not only care but rights, respect, and purpose.

Peer Support and Connection

One of Dementia Alliance most important contributions has been the creation of online peer-to-peer support groups. Long before Zoom became a household name, the Dementia Alliance were connecting people across time zones for virtual cafés and social catch-ups.

For members, these sessions are not about medical charts or paperwork—they are about laughter, friendship, and knowing you’re not alone. This kind of connection can be especially important in rural and regional areas like the Hawkesbury, where services are thin on the ground and travel can be difficult.

Global Advocacy, Local Impact

Dementia Alliance International represents people with dementia in international forums and working alongside disability rights organisations. By reframing dementia as a disability deserving of recognition and protection, they ensure that governments and health systems are reminded: people with dementia are still people, with the right to live with dignity.

For families in the Hawkesbury, this advocacy can feel far away, but its impact is real. The push for stronger aged care standards, dementia-friendly design in facilities, and more support for carers owes much to organisations like Dementia Alliance that keep governments accountable.

Why It Matters in Hawkesbury

The Hawkesbury has an ageing population, and many local families are already grappling with dementia—whether through diagnosis, caring for a loved one, or worrying about the future.

Dementia Alliance  offers not just resources, but hope: hope that dementia does not mean the end of a meaningful life, and hope that with the right networks, respect, and policies, people can continue to live well in their own communities.

Find Out More

If dementia touches your life, or that of someone you love, you may wish to explore DAI’s free peer support groups, webinars, or advocacy work. Visit to learn more see https://dementiaallianceinternational.org/.

Because while dementia changes lives, organisations like Dementia Alliance remind us that no diagnosis should ever erase a person’s rights, voice, or humanity.

 Local Hawkesbury Services Overview

Anglicare

Anglicare Support groups for carers and social groups for people living with dementia in various locations. Day and overnight respite are also available. 1300 111 278 www.anglicare.org.au/ services/dementia-care

Peppercorn Services Inc.

Provides a range of services, including community transport, meals services and NDIS support coordination. (02) 4587 0222 Peppercorn.org.au

Health and Leisure to You

• A local NDIS-registered provider offering social support programs tailored to those with younger-onset dementia.
• Services include outings and cognitive-stimulating activities, based at the Hawkesbury Leisure and Learning Centre with pick-up and drop-off available.
  (healthandleisuretoyou.com.au)

Nurse Next Door – Hawkesbury

• Offers in-home dementia and Alzheimer’s care, including help with daily activities, nursing support, and companionship.
• Available 24/7, with no long-term obligations—a flexible option for home-based support.
  (Nurse Next Door Home Care Services)

Hawkesbury Living (Cameron Cottage)

• A residential aged-care facility in Richmond featuring a dedicated memory-care wing, Cameron Cottage.
• Provides both high-care and low-care, with dementia-trained staff working in a homelike setting.(Richmond Club)