When no system fits: Why younger people with dementia are still ending up in aged care

“Let young dementia patients into aged care,” read a recent headline in Australian Doctor. It marked a striking shift in tone from Dementia Australia, the country’s leading advocacy body for people living with cognitive decline. For years, the focus has been on removing younger people — those under 65 — from residential aged care. But now, in a pragmatic turn, Dementia Australia acknowledges what many families already know: for some younger people with dementia, aged care may be the only viable option.

“We’re not saying it’s appropriate,” said a spokesperson. “But neither is the disability system equipped to support these individuals. Right now, there is no ideal system.”

This is not a fringe issue. Around 29,000 Australians are living with younger onset dementia, often diagnosed in their 40s or 50s—while still working, raising families, and leading full lives (AIHW, 2022). As their needs increase, they find themselves caught between two systems: aged care, which they’re deemed too young for, and disability services, which often lack the expertise or infrastructure to support cognitive decline.

A policy with good intentions, and unintended outcomes

In 2020, the Federal Government committed to eliminating younger people from residential aged care (YPIRAC). While the number dropped from 3,700 in 2019 to just over 1,000 at the end of 2024, the 2025 target will not be met.

The policy has created a double bind. People under 65 are largely blocked from entering aged care unless they meet strict exemption criteria. Meanwhile, the disability system — namely the NDIS — is struggling to meet their clinical and emotional needs. As Dementia Australia had previously warned, younger people are being left “stuck in hospitals, unsuitable housing, or without services at all”..

Why the disability system isn’t working

NDIS support is structured around goals like skill development and independence — not progressive cognitive decline. Many planners lack training in dementia, and most providers aren’t equipped for 24/7 supervision or the behavioural complexities that come with neurodegenerative conditions.

Younger people with dementia often find themselves in shared housing that isn’t designed for their needs, or waiting endlessly for unavailable community placements. Respite and day programs are often geared toward older cohorts or stable disabilities, leaving this group isolated. As one carer said: “Mum is too young for aged care, too complex for disability, and there’s no one else like her where we live” (YPINH Summit, 2024).

The impact on aged care providers

Aged care homes are not designed for residents in their 40s and 50s. These younger residents often have more energy, unique social needs, and complex behavioural symptoms. They can feel alienated in an environment geared toward the frail elderly, which increases the risk of depression and agitation.

For providers, this brings challenges. Staff trained primarily in geriatric care may struggle to support younger residents with early onset symptoms. More intensive engagement strategies, tailored environments, and dual system compliance with the NDIS and aged care standards are often required.

Funding gaps, housing bottlenecks, and workforce strain

Although most younger people in aged care now have NDIS plans, around 25% do not according to Department of Health data. Even for those who do, funding frequently falls short of the high-care needs required — particularly when clinical nursing and dementia-specific supports are essential. Purpose-built homes remain rare and at capacity, leaving residential aged care as the only option for many families in crisis.

What senior care leaders can do now

While aged care shouldn’t be the default destination for younger people with dementia, the reality is that it sometimes is. Leaders in the sector can:

• Partner with disability services to improve transitional and co-managed care
• Invest in staff training specific to younger onset dementia
• Adapt environments to reduce social isolation and behavioural risks
• Advocate for policy flexibility that reflects real-world complexity

As Dementia Australia has said, the goal is age-appropriate, needs-based care — regardless of which system delivers it.

Until funding, design, and policy systems catch up, aged care leaders will remain a critical part of the safety net. We must ensure that no one — regardless of age — falls through the cracks.