What is younger onset dementia, how do I know if I ...

Key points:

Younger onset dementia is characterised as dementia in a person under the age of 65
You can still continue working with younger onset dementia
If you have received a diagnosis, you should start putting in place strong estate plans for the future

Dementia is less common in people under the age of 65 and in 2022 around 28,800 people in Australia are living with younger onset dementia.

Getting a diagnosis of younger onset dementia is often difficult for younger people because they are right in the middle of a busy time of their life.

Alzheimer’s Western Australia says that most doctors do not even consider dementia a medical option for anyone under the age of 65.

Getting diagnosed with younger onset dementia

In most cases, doctors attribute symptoms of younger onset dementia to stress, depression, grief or loss, or normal ageing.

Some research has found memory loss is not the first indicator a person will notice when it comes to dementia.

The more common signs of younger onset dementia seem to be sleeping for longer, short-tempered moods which are uncommon for the person, or losing interest in things around them.

Other signs can include memory loss or confusion, repetitive behaviours, becoming withdrawn from family or friends, and issues with language or communication.

The diagnosis process can be very long as many doctors would not consider younger onset dementia as an option straight away. In most cases, doctors will put effort into finding out if there is another cause for your dementia-like symptoms.

You will need to ask your doctor to investigate younger onset dementia as a possibility. Alzheimer’s WA says that there isn’t any specific diagnostic test available to diagnose younger onset dementia.

However, you will need to undertake a medical and psychological assessment, which may confirm a dementia diagnosis.

Getting an early diagnosis for younger onset dementia can be really important as it gives you more time to put interventions in place to assist with any behaviours or issues that may arise from your dementia.

You can start applying for financial support as well, like through the National Disability Insurance Scheme (NDIS). Depending on the severity of your dementia, you may be eligible for NDIS funding.

Another benefit of early diagnosis is that once your supports are in place, it allows you to keep your current lifestyle for longer.

Where do I go from here?

Figuring out the next step after a younger onset dementia diagnosis can be difficult.

In many instances, people diagnosed with younger onset dementia are encouraged to “get their affairs” in order, such as Wills and aged care plans. However, because dementia is a condition with such gradual decline, your life may not be impacted much by a diagnosis straight away.

Whilst it is important to be prepared for what may come next, a diagnosis of dementia does not mean your life is over!

Networks for those with younger onset dementia

There are many ways to continue living with dementia and having extra support from family, friends and service providers can make all the difference.

You and your spouse may find it helpful to access counselling or support groups to cope with a recent diagnosis.

There are a number of groups, including Dementia Australia, that host support groups for people with younger onset dementia and their families, as well as information events to further educate on what comes next.

Dementia Australia also puts families and carers in touch with other families going through a similar situation to create positive links to support groups.

The National Dementia Helpline, 1800 100 500, is another great service that can refer you to support, information, services and counselling.

Working with younger onset dementia

Generally, people with younger onset dementia lead active lives full of physical and social activities, as well as work commitments.

Remaining at your workplace is possible, although it does depend on how your dementia affects your ability to work.

Over time your ability to work, communicate or understand things may decline, which could mean adjustments need to be made to your work environment.

Ask for help from family or friends to figure out how to approach your employer to make appropriate adjustments or seek advice from your doctor, a trade union, legal and financial advisors, Carers Australia or Dementia Australia, or a counsellor.

You can have someone you trust go along with you to explain the situation properly and provide support.

To stay in the workplace:

Suggest possible changes to aspects of your work to make tasks easier
Identify who else may need to know in the workplace
Choose two trusted people to be key supports during work
Be familiar with anti-discrimination legislation and laws when going into a meeting with an employer
Employment conditions can change, including sick leave or disability entitlements
Encourage the employer to investigate ways to make it work or how to deal with having an employee with dementia

When leaving a workplace, make sure you receive all the entitlements and benefits you are owed, such as superannuation, sick leave or long service leave, income protection insurance, disability benefits, or Government benefits.

Big financial decisions

When someone is diagnosed with younger onset dementia, they often have rather large financial responsibilities, like debts or mortgages.

People diagnosed with younger onset dementia can feel a huge sense of loss if they have to give up work unexpectedly, especially if it’s their main source of income.

Future holidays may have to be rescheduled and managing future finances might require a financial expert.

If you have a joint account with your partner, this doesn’t necessarily need to change. But you may need to be aware that sometimes dementia can lead to the inappropriate use of money so it may be worth talking to your bank about what provisions can be put in place.

You can give authority to someone you trust to operate a separate account on your behalf. Banks can also put daily spending limits on bank accounts.

Planning ahead is key when it comes to sorting out your finances and estate plan, this includes having joint signatures on financial accounts, future financial plans sorted with a financial advisor, and possibly implementing an Enduring Power of Attorney.

Planning for the future

It’s important for you to not think of your diagnosis as a “death sentence” but to continue engaging in things you love to do, as well as look positively on your future.

Make decisions about future care and life with dementia early, so you can still have some autonomy over your future care, and personal and financial decisions when you are no longer able to make those decisions.

Having a Will regularly updated is important to make sure your loved ones know what you want to happen to your estate, which is why a person with dementia should have a legal Will written and signed as soon as possible.

The Will can be updated by you while you still have legal capacity, which involves a doctor’s certificate to verify you are still able to make legal decisions.

Having an Enduring Power of Attorney (EPOA) can be another important step, which appoints a person you trust to make legal and financial decisions on your behalf. Similarly, Guardianship is available in most States and Territories in Australia, which involves someone making decisions for a person who can no longer make them.

An advance care directive is another important medical care option for a person with dementia, which can allow you to maintain choice, control and direction over your care even after you have lost your cognitive abilities to make decisions.

How did you and your family deal with a younger onset dementia diagnosis? Tell us in the comments below.