What to do when you’re under 65 and need dementia support

A recent headline from Australian Doctor — ‘Let young dementia patients into aged care,’ says Dementia Australia — highlights the growing concern. While aged care isn’t designed for younger people, sometimes it’s the only place that can provide the level of support needed when other services fall short.

There are nearly 29,000 Australians living with younger-onset dementia and their needs often don’t align neatly with existing systems. Many are still working or raising children when they’re diagnosed and the progression of symptoms can happen fast.

Why aged care isn’t usually the answer — unless it has to be

Since 2020, the Federal Government has worked to phase out people under 65 in residential aged care. The numbers have dropped, but many younger people with dementia still end up in aged care homes — because there’s nowhere else to go..

Disability services like the NDIS are designed to support people with lifelong disability — not people experiencing rapid cognitive decline. As Dementia Australia put it, ‘The aged care system isn’t appropriate — but neither is the disability sector adequately equipped.’

Why the system is failing younger people with dementia

Even when someone qualifies for the NDIS, it can be hard to get the right support. NDIS planners often don’t understand dementia and many disability housing and support services aren’t designed for people who need 24/7 care or behaviour management.

Respite and day programs for younger people with dementia are few and far between. Most are tailored to much older people. One carer summed it up: “Mum is too young for aged care, too complex for disability, and there’s no one else like her where we live.”

Finding care that fits

If you or a loved one is under 65 and needs dementia support, here are some steps to take…

• Apply for the NDIS and make sure your planner understands younger-onset dementia.
• Ask your GP or specialist to link you with a local dementia advisor.
• Search for services and accommodation via Disability Support Guide or Aged Care Guide.
• Contact providers directly and ask whether their support is suitable for younger people with dementia.

What happens if aged care is your only option?

Sometimes, aged care is the only place that can meet complex care needs. If that’s the case, try to:

• look for homes with experience supporting younger residents;
• ask about access to activities, peer engagement and dementia-trained staff; and
• check if your NDIS plan can fund extras within the aged care setting.

Things are changing — slowly

Some organisations are developing purpose-built homes and programs for younger people with dementia, but they’re still rare. In the meantime, knowing where to look — and asking the right questions — can help you find care that better fits your needs.