Dementia is now the leading cause of death in Australia. It is an epidemic that steals the identity of individuals while they are still alive. This exacts a brutal toll. Its prevalence continues to climb rapidly alongside an ageing population.
Over the past decade, the number of Australians living with dementia surged to reach an estimated 459,000 this year, with about 78,500 new cases diagnosed annually.
By 2040, an estimated 725,000 Australians will live with the condition. Furthermore, experts predict this figure will surpass 1 million by 2065. Last year, more than 18,300 Australians died directly from the disease. Thousands more passed away with it recorded as an associated cause.
These statistics represent hundreds of thousands of grieving families whose lives are sacrificed to an impenetrable health system. When loved ones receive a diagnosis, family members find the journey isolating and profoundly frightening. Life partners slowly disappear.
They are left exhausted by the need to be super vigilant about physical hazards such as discovering plastic electric jugs placed on hot stovetops. Meanwhile accessing adequate assistance is an uphill battle.
Health professionals and policy consultants alike describe a bureaucracy so convoluted it is impenetrable.
Carers are left feeling the true purpose of the "support" network is to stop people from using it. As a result some families suffer in silence because they have no idea of where to find the respite care they need.
This is a massive systemic failure that leaves vulnerable citizens abandoned. Each year, roughly $6 billion is spent on dementia care nationwide, yet the framework leaves individuals overwhelmed. Politicians, including ACT independent senator David Pocock, routinely hear harrowing stories of constituents falling through the cracks, forced to navigate disconnected health, disability and community sectors during the most traumatic periods of their lives.
Without a streamlined support mechanism, the broader medical system has to take up the slack.
Geriatricians report dementia patients remaining stranded in acute care beds for 100 days, and sometimes more than 600 days. These patients languish in urgently needed acute care beds simply because they have nowhere else to go.
It is troubling that private citizens are having to step in to fill the void left by inadequate government action.
In the ACT a group of volunteers led by former health executives and community professionals has undertaken to organise a national dementia summit next February. The organisers promise this won't be another talkfest. Instead, experts and individuals with lived experience will collaborate to design a practical system of dementia navigators, aiming to seamlessly connect patients and carers with essential services when they need them most.
While such initiatives reflect an inspiring community spirit, they also expose what appears to be an abdication of public responsibility across the broader political spectrum.
Yes, the upcoming summit is welcome and deserves support - but what are governments doing to rise to the occasion?
Everything that can be done should be done to find better treatments, to make it far easier to obtain a diagnosis, and to streamline the support pathway.
Families desperately need professional navigators who can guide them through the terrifying maze of care every single day. Leaders across all levels of government must step up, demonstrate genuine leadership, and ensure no more grieving families are sacrificed to this grim condition.
