What is dementia?

Dementia is a word used to describe illnesses that cause changes in memory, thinking and behaviour over time.

Dementia can affect how a person:

• remembers things
• makes decisions
• communicates
• takes part in everyday life

For many Aboriginal and Torres Strait Islander peoples, dementia can also impact connection to:

• family
• community
• culture

It can impact the important role of Elders in sharing knowledge.

Who is affected by dementia?

Dementia can affect anyone. It is more common as people get older, but it can also happen to younger people.

Dementia can affect Aboriginal and Torres Strait Islander peoples in the same ways it affects non-Indigenous Australians. However, Aboriginal and Torres Strait Islander peoples are more likely to experience dementia. Aboriginal and Torres Strait Islander peoples are also more likely to get dementia at a younger age.

For Aboriginal and Torres Strait Islander peoples, this means there is a higher:

• incidence of dementia — more new cases of dementia in the community over time
• prevalence of dementia — more people living with dementia at any given time

This is likely due to higher rates of risk factors (things that increase the chance of something) for dementia among Aboriginal and Torres Strait Islander peoples. These include:

• type 2 diabetes
• high blood pressure (hypertension)
• obesity
• smoking

Common types of dementia in Aboriginal and Torres Strait Islander peoples

The most common types of dementia in Aboriginal and Torres Strait Islander peoples are:

• Alzheimer's disease — caused by build-up of certain proteins in your brain
• vascular dementia — caused by problems with blood flow to your brain
• mixed dementia — has features of different types of dementia
• dementia with Lewy bodies — caused by abnormal clumps of protein that damage nerve cells in the brain
• frontotemporal dementia — caused by abnormal clumps of protein that damage the front of your brain

What are the symptoms of dementia?

The symptoms of dementia can be different depending on the type of dementia. In the early stages, the signs of dementia can be very mild and easy to miss.

Early signs can include:

• cognitive changes — you may feel confused, forget recent events, find it harder to concentrate, or hallucinate
• apathy — you may have a lack of emotion or interest
• personality changes and mood changes
• impulsive behaviour
• language difficulty — you may have trouble finding the right words
• difficulty with tasks that you usually find easy
• stiff movements

What causes dementia?

There are many different types of dementia. They each have their own cause.

There are some things that can make it more likely for you to get dementia. These include:

• high blood pressure or high cholesterol
• type 2 diabetes or obesity
• loneliness or depression
• kidney disease
• brain injury or stroke
• hearing loss or poor eyesight
• low physical or mental activity
• drinking too much alcohol

Smoking and breathing polluted air can also increase your chance of getting dementia.

When should I see a doctor?

If you have noticed any changes in yourself, or in someone you care about, that could be early signs of dementia — it's important to reach out. You can yarn with:

• your family
• your Elders
• a trusted Aboriginal health worker or doctor

A doctor can help rule out other conditions that have symptoms like dementia.

It's important to get help early. This way support, information and treatment can be organised as soon as possible. Getting support early can make a big difference for you and your mob.

Find an Aboriginal Community Controlled Health Organisation (ACCHO) near you on the National Aboriginal Community Controlled Health Organisation (NACCHO) website.

How is dementia diagnosed?

Your doctor will ask you about your symptoms and examine you. They may arrange for you to have some tests. These may include:

• blood tests
• an MRI scan
• a CT scan

They may also ask you to do a screening test for dementia.

Only a doctor can diagnose dementia.

Your doctor may refer you for further support, such as from a:

• psychiatrist
• geriatrician
• neurologist

How is dementia treated?

There is no cure for dementia, but there are medicines that can help with some symptoms. These medicines may help slow down the progress of the dementia.

How can I live well with dementia?

If you are living with dementia, staying connected to your culture, people and Country can help you feel strong and supported. You might find it helpful to:

• keep up your cultural practices — take part in things like ceremony, storytelling, art and music to keep you grounded in culture
• have a yarn — spend time with family, Elders and friends, sharing stories and staying connected
• be on Country — where possible, spend time on Country to support your spirit, identity and wellbeing
• stay connected to Community — whether that's through local groups, services, or gatherings, being around mob can help you feel supported and understood

Everyone's journey with dementia is different. Staying connected can help you continue to live well and feel strong.

Planning for the future

Thinking about the future isn't always easy, but having a plan can help:

• bring peace of mind for you and your loved ones
• make sure your wishes are known and respected
• make sure that the people around you feel supported when the time comes

There are some things you will want to think about, like:

• choosing a power of attorney
• sharing your wishes for care through an Advance Care Directive
• planning for sorry business

A power of attorney is someone you choose who you trust. This person can speak up for you and make decisions when you are no longer able to. This can include decisions about:

• money
• health
• day-to-day choices

An Advance Care Directive lets people know what matters to you when it comes to:

• your health
• medical treatment
• how you want to be cared for

Planning for sorry business involves thinking about:

• your wishes for when you pass
• cultural practices
• family involvement
• how you want to be remembered

Getting support

If you are living with dementia, talk to your doctor or Aboriginal health worker.

They can help you get further support, such as from:

• Caring for Spirit
• Dementia Australia
• the National Dementia Helpline
• My Aged Care

If you are caring for someone with dementia, you can find support through Carer Gateway.

Can dementia be prevented?

There are things you can do throughout your life to help lower your chance of getting dementia, such as:

• connecting with friends and family
• eating well
• being physically active
• keeping a healthy weight
• engaging in learning and employment
• not smoking
• drinking alcohol in safe amounts

You can also see a doctor or other health professional for a checkup of your:

• heart and circulation
• eyes and ears
• emotional health
• teeth

Resources and support

If you need support and resources about dementia, there are organisations that can help. You can:

• call the National Dementia Helpline on 1800 100 500 — this is a free and confidential service providing expert advice and support about dementia
• visit My Aged Care or call 1800 200 422 for support for Aboriginal and Torres Strait Islander peoples aged over 50 years of age — this includes the Elder Care Support Program
• visit Caring for Spirit for resources and information on dementia for Aboriginal and Torres Strait Islander communities
• visit the Dementia Australia website for information and videos about dementia, including for Aboriginal and Torres Strait Islander peoples
• visit Let's CHAT Dementia through the University of Melbourne — this project includes resources about dementia for Aboriginal and Torres Strait Islander communities

Resources for carers of people living with dementia

If you are helping someone who has dementia, HealthWISE has developed video resources for Aboriginal and Torres Strait Islander peoples' carers. These videos include information about dementia and self-care for carers.

The Dementia Support Australia website has resources for carers. These include caring for someone with dementia and behaviour support for Aboriginal and Torres Strait Islander peoples with dementia.

Visit the Carer Gateway website for support or call on 1800 422 737. You can read their fact sheet for Aboriginal and Torres Strait Islander peoples' carers.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.