Early onset dementia: support for younger people

A dementia diagnosis before 65 raises different questions from one later in life. Work, family, money and plans for the future can all be affected at once. This guide explains early onset dementia and the in-home support available to you and your family.

What is early onset dementia?

Early onset dementia is any form of dementia diagnosed before the age of 65. Dementia Australia now calls it young onset dementia, and you may also hear "younger onset dementia".

It isn't one type of dementia. It describes the age at diagnosis, so a person might have young onset Alzheimer's disease or young onset vascular dementia, for example.

Dementia Australia notes there's no single test for it, so doctors usually use several kinds of tests to reach a diagnosis.

Many people lead active and fulfilling lives for years after a young onset diagnosis. The right support can help you keep doing the things that matter to you.

How it can affect everyday life

Younger people living with dementia often face different pressures from older people. Dementia Australia points to a few common ones:

• Work: you're more likely to be working when you're diagnosed

• Family: you may still be raising children or living with family

• Money: changes in your ability to work can affect your income

• Daily life: you may be active in your community and other parts of life

In-home support works best when it fits around all of this. You decide what matters most, and the support follows your priorities.

National Disability Insurance Scheme (NDIS) support if you're under 65

The NDIS funds supports for people with a permanent and significant disability. People living with dementia who are under 65 may be eligible.

To apply, the NDIS says you must:

• Be younger than 65 on the day you apply

• Be an Australian citizen, a permanent resident or hold a Protected Special Category visa

• Live in Australia

• Meet the NDIS disability requirements

You can check the details on the NDIS age requirements page.

If you join the NDIS before you turn 65, the NDIS says you can choose to keep using NDIS supports or change to aged care. You'll have to leave the NDIS if you move into an aged care home after turning 65.

If you're found not eligible, you can ask the National Disability Insurance Agency (NDIA), which runs the NDIS, to review the decision.

What NDIS supports can help with

Your NDIS plan funds supports that are reasonable and necessary for your disability. In plain terms, they need to relate to your disability and help you work towards your goals.

Depending on your plan, supports at home might include:

• Help with household tasks, such as cleaning or meals

• Personal care, such as showering and dressing

• Support to get out into your community, or to keep up hobbies

• Help to get to work, appointments or social activities

• Behaviour support, where it's assessed as reasonable and necessary

Dementia Australia has information on applying and on preparing for your first planning meeting. Writing down your goals beforehand can help you get the most from that conversation.

Support from Dementia Australia

Dementia Australia offers free services for people with young onset dementia and their families. These include:

• Counselling after a diagnosis, for you and your family

• Family engagement counselling for households affected by young onset dementia

• The Living With Young Onset Dementia program, with information and advice after a recent diagnosis

• Peer support, connecting you with others who have had a similar diagnosis

The National Dementia Helpline is free, confidential and available 24 hours a day. Call 1800 100 500 for information, advice and referrals.

Support for your partner and family

Partners, children and friends often take on new roles, and support is available to them in their own right.

Carer Gateway offers free counselling, coaching and respite for unpaid carers. Your family can call 1800 422 737 on weekdays between 8am and 5pm.

If you're 65 or over

If you're 65 or over and haven't joined the NDIS, help at home comes through aged care instead. Support at Home is the government's in-home aged care program. Aboriginal and Torres Strait Islander people, and people who are homeless or at risk of homelessness, can apply from 50.

You can start with an assessment through My Aged Care on 1800 200 422.

Talk to us about in-home support

At HomeCaring, we're a registered Support at Home and NDIS provider, and your supports are led by people who live and work in your community.

If you or your loved one is living with early onset dementia, tell us what matters to you. We'll talk you through how in-home support could work alongside your NDIS plan.

We'll start with a free in-home assessment and keep you updated at every step. Reach out to our Care Specialists on 1300 875 377.