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Younger onset dementia

8-minute read

What is younger onset dementia?

Younger onset dementia is used to describe any form of dementia that develops in people under the age of 65. Dementia has been diagnosed in people in their 50s, 40s and even in their 30s. It is sometimes called early onset dementia.

Younger onset dementia is similar to other types of dementia in many ways. The same problems generally occur, but the disease can have a different impact on a younger person because they are more likely to be employed full time, raising a family or financially responsible for a family.

What are the symptoms of younger onset dementia?

The symptoms of dementia are similar no matter what age they start. They include:

  • memory loss that interferes with daily life
  • confusion
  • difficulty performing familiar tasks
  • repetitive behaviour
  • withdrawing from friends and family
  • losing the ability to think clearly or make judgements
  • language problems
  • changes to behaviour

Many conditions can produce symptoms that are similar to dementia, such as vitamin and hormone deficiencies, depression, medication, infections and brain tumours.

What causes younger onset dementia?

Many different types of dementia can affect younger people. Each type has its own symptoms and is caused by a specific type of change in the brain. Some causes of early onset dementia are:

When should I see my doctor?

Anybody who suspects they have younger onset dementia should see their doctor. An early diagnosis is important because it allows for early planning and early access to support, information and possibly medication.

How is younger onset dementia diagnosed?

Younger onset dementia can be difficult to diagnose, mainly because the person affected seems too young. Diagnosis may involve:

  • a detailed medical history
  • a thorough physical and neurological examination
  • pathology tests
  • brain imaging
  • a psychiatric assessment
  • a neuropsychological assessment (this tests cognitive function, such as memory, reasoning and comprehension)

What happens after a diagnosis of younger onset dementia?

A diagnosis of younger onset dementia can come as a shock. The person affected, and their family and friends may all feel angry or sad. They might not believe it. There can be a huge sense of loss. These feelings are normal.

But help and support is available, and it is better to get it earlier than later.

Younger people with dementia need to think about several issues.

Planning for the future

Planning early makes it easier for someone with younger onset dementia to manage their financial, legal and medical affairs now and in the future.

If you have been diagnosed with younger onset dementia, it is important to make important decisions while you still can and while you are legally competent to sign any documents.

Things to think about include:

  • your living arrangements into the future
  • who can have access to your financial accounts
  • having joint signatures on all financial accounts
  • arranging when and how you will access your finances
  • talking to a financial adviser
  • sorting out superannuation, health and income insurance
  • writing or updating your will

If you have been diagnosed with dementia, it’s important to nominate a trusted person to manage your affairs in the future. You can do this through an Enduring Power of Attorney (EPA).

A financial EPA enables a nominated person to look after your financial affairs if you become unable to do so. A medical EPA covers only medical decisions. The laws regarding EPAs vary between states and territories, so it's important to seek legal advice before the agreement is completed, or if you are moving interstate.

Some states also have medical guardianship (which may have different names). This allows someone to choose a person to make medical decisions for them. For more information on guardianship and administrators, visit the My Aged Care website.

You can also make an advance care plan, which is a document setting out your wishes about medical treatment in the future. If you have made decisions about the end of your life, such as resuscitation and life support decisions, it is important to discuss this with your doctor and that there is a record of the discussion and decisions in your file at your hospital and with your doctor. For more information about making an advance care plan, visit the Advance Care Planning Australia website.

Work

If you are diagnosed with younger onset dementia and you are still working, you will eventually need to make changes. You may need to change roles, or stop working earlier than expected. This can put extra financial strain on the family.

Employers have a legal responsibility to continue to employ a person who has dementia. It may be illegal for an employer to fire someone because of an illness like dementia. People with dementia are often able continue working. Changes to aspects of their job may make things easier, including having 1 or 2 trusted people to support them at work.

You might need to talk to your employer about the condition. It’s important to plan for this discussion, and perhaps take a trusted person with you.

If you are planning to leave work, it’s important to think about this carefully and not to rush it. You should get advice to ensure you get their proper entitlements.

Dementia Australia’s resource Younger Onset Dementia: A practical guide has more information.

Finances

It may be possible to receive a disability pension. Carers of people with dementia may also be entitled to financial help. Find out more on the Services Australia website.

The National Disability Insurance Scheme is available to help people under the age of 65 access services and support.

The doctor who cares for the person with dementia may develop a Health Care Plan that can help with the cost of specialised services such as physiotherapy. A doctor might also arrange for an assessment by an Aged Care Assessment Team (ACAT). Although the person with dementia is not aged, this type of assessment is sometimes used to access a range of health services that can help the person with dementia and their carer.

It may also be possible to access superannuation early. You can read more in Dementia Australia’s resource, Superannuation and dementia.

Legal rights

Some people with dementia face discrimination and find it hard to get insurance and even accommodation.

Fortunately, there are laws to protect people with dementia and their carers against discrimination. It’s important to be familiar with anti-discrimination legislation and know about all the entitlements of someone with dementia.

A person with dementia who owns their own business or is a director of the company must still fulfil their legal obligations, such as keeping accurate accounting records and meeting tax obligations.

You can read more about dementia and legal rights in Dementia Australia's resource Dementia and your legal rights. The Australian Human Rights Commission has information about disability rights.

Looking after yourself

After a dementia diagnosis, it’s important to look after your health. Exercising regularly, eating a healthy diet, getting plenty of rest and incorporating relaxation into your day can help.

Make sure you take your medication as instructed by your doctor.

There are plenty of things you can do around the home and outside to help you manage. For example, you can use bright globes to improve lighting, put items in places where you can find them, label the taps and appliances, or use technology to help you manage.

You can download the Dementia-Friendly Home app to help make the home more dementia friendly.

The Dementia Australia fact sheet Looking after yourself has more information.

Respite care

Everyone, including the main carer, needs to have time out to make sure they don’t burn out. One option to explore as early as possible is respite care. This can be especially important in younger onset dementia, when carers may be looking after children and ageing parents as well as working.

Respite care can be given:

  • in the person’s home
  • in a day centre
  • in a community respite cottage for overnight or weekend care
  • in a residential aged care home
  • as emergency respite

The Commonwealth Government funds many types of respite care. To find out about respite options — including emergency respite care — call Carer Gateway on 1800 422 737, 24 hours a day, 7 days a week.

It is important to find someone prepared to listen and who is able to find options other than aged care facilities.

Resources and support

Dementia Australia’s younger onset dementia hub is a good place to start.

Dementia Australia also coordinates support groups throughout Australia. Some of these groups are specifically for carers of people with younger onset dementia, such as the specialised Living with Dementia Program for people with younger onset dementia. Support groups can provide comfort and practical assistance for carers, relatives and friends of people with dementia.

You can find out more by calling the National Dementia Helpline on 1800 100 500 or the Carers Australia helpline on 1800 242 636.

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Last reviewed: April 2020


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