What is dementia?

Dementia describes a group of conditions that cause a gradual loss of brain function. It can affect your:

• memory
• intellect
• ability to think rationally
• social skills

Dementia is a broad term, not a specific disease. About 1 in every 12 people aged 65 years and over are living with dementia in Australia.

While dementia is more common in older people it is not a normal part of ageing.

Rates of dementia are higher in Aboriginal and/or Torres Strait Islander people.

Dementia is a progressive condition (it gets worse over time). In the early stage you have some changes in your thinking and memory but can still function well.

In middle-stage dementia, the changes to your mood, memory, thinking and behaviour are stronger. You will start to need support from other people.

In severe or late-stage dementia, you may be unable to remember people, communicate, walk or look after your own hygiene. At this stage, you will need constant care.

What are the symptoms of dementia?

Your symptoms of dementia might not be obvious at first.

You might have:

• memory loss
• changes in your planning and problem-solving skills
• trouble doing everyday tasks
• changes in your mood and personality
• a lack of interest in things and activities you used to enjoy
• poor judgement
• problems with speaking and writing
• confusion about time and place

Remember that not all memory loss is due to dementia. Speak with your doctor if you feel concerned about changes to your memory or thinking skills.

Watch the video below to learn more about the early warning signs of dementia.

What is sundowning?

Sundowning is when people with dementia become restless and their symptoms are worse in the late afternoon or evening. They may become more:

• disorientated (lost)
• demanding
• suspicious
• aggressive
• distracted
• restless — they might pace around or yell out

The exact cause of sundowning is unclear. Many things might play a part, such as:

• changes in light, which affect the body clock
• disturbed sleep or not enough sleep
• difficulties communicating about things like pain, hunger or fear
• a feeling of being alone, if there are fewer caregivers around
• being tired at the end of the day
• a lack of routine activities
• being over-medicated

Sundowning can be worse after a change in routine. If the person with dementia is not where they usually spend the day or evening they might get restless.

It's useful to keep a diary to note down the times and things that happen. These notes make it easier to discuss the symptoms with a doctor or dementia care nurse.

What causes dementia?

There are many different causes of dementia. Some of the most common causes are:

• Alzheimer's disease — more than 1 in 2 people with dementia have Alzheimer's disease
• vascular dementia — may happen after a stroke or untreated high blood pressure
• Lewy body disease — Lewy bodies (protein) stop your brain cells from working properly

• frontotemporal dementia — caused by damage to either or both the frontal or temporal lobes of the brain
• alcohol related dementia — dementia caused by regularly drinking too much alcohol
• chronic traumatic encephalopathy — a type of dementia caused by repeated head injuries
• younger onset dementia (early onset dementia) — dementia in people under the age of 65 years
• HIV-associated dementia

When should I speak to a doctor about dementia?

See your doctor if you notice any of these warning signs. Such as problems with your memory or thinking:

• Memory loss — you forget things that should be familiar, and still don't remember them later.
• Misplacing things — you might put things in the wrong place.
• Difficulty with familiar tasks — you might make a meal then forget to eat it.
• Disorientation of time and place — you forget how to get home.
• Poor judgement —you might make risky moves when driving.
• Problems with abstract thinking —you find it harder to understand your finances.
• Language problems — you forget simple words or say the wrong word.

Or changes in your mood or personality:

• Changes in mood or behaviour — you have rapid mood swings for no apparent reason.
• Changes in personality — you might become more suspicious, fearful, uninhibited or outgoing than before.
• Loss of initiative — you have become more passive or uninvolved in activities.

It's important not to assume you have dementia based on these symptoms alone. Other conditions can also cause dementia-like symptoms, for example:

• depression
• delirium
• infections
• hormone imbalances
• poor diet

Many of these other conditions can be treated by your doctor.

If you've noticed some of these changes in yourself, or someone else has noticed them, talk to your doctor. You can also call the National Dementia Hotline on 1800 100 500 for advice.

How is dementia diagnosed?

There is not a single test that shows if you have dementia.

To diagnose dementia your doctor needs to do a full medical and psychological (thinking) assessment. This may include:

• a detailed medical history
• neurological tests to check your senses and movement
• mental tests for memory, focus and counting skills
• blood tests
• urine tests
• other tests such as a chest x-ray, ECG, CT scan or MRI scan

Your doctor may also refer you to a:

• neurologist (a doctor who specialises in the brain)
• neuropsychologist (a psychologist with a special interest in dementia)
• geriatrician (a doctor who specialises in looking after older people)

An early diagnosis allows you to get the support you need.

Learn more from the video below about the symptoms that can help a doctor to diagnose dementia.

How is dementia treated?

Unfortunately, there is no cure for dementia.

Many people living with dementia find ways to cope with their illness and improve their quality of life.

General care and support

Good carers can help offer a safe and predictable environment. It's important to have carers who you can trust and who understand your needs.

It might be helpful to make changes to your home. Adapting your home can help you feel:

• less disoriented
• safe
• comfortable
• independent

Visit Health Victoria's website for some ideas on creating 'dementia-friendly environments'

Medicines

While there are no medicines to cure dementia, some medicines can help with the symptoms.

Your doctor will consider the type of dementia you have, and your medical history. Some medicines used to manage symptoms related to dementia include:

• cholinesterase inhibitors
• memantine

• antipsychotic medicines
• antidepressant medicines

If you take a lot of different medicines, a pharmacist can provide home medicine reviews.

Watch the video below and learn more about the therapies for dementia.

Can dementia be prevented?

There are many possible causes of dementia. There is no known way to prevent it.

However, you can keep your brain and body healthy by following a healthy lifestyle. This includes:

• being socially and physically active
• eating a balanced diet
• quitting smoking or vaping
• if you drink alcohol, drinking in moderation
• keeping your brain active
• looking after your hearing
• avoiding head injuries

It's also important to manage any other health conditions that you might have, such as:

• hypertension (high blood pressure)
• diabetes
• cholesterol
• depression
• hearing loss

What do I need to know if I care for someone with dementia?

Caring for someone who is living with dementia can be both demanding and rewarding. It's also important to take breaks to look after your own needs.

Ask other family members and friends to give you a break from caring. You may also be able to use respite care.

Planning ahead

It's wise to help the person you are caring for to plan ahead whilst they still have capacity. Encourage them to appoint an Enduring Guardian. Support them to write an Advanced Care Plan. These documents will help everyone to understand their wishes on healthcare and other topics.

Communication

People with dementia need to feel understood. Here are some ways of talking that can help people living with dementia feel supported.

• Validation therapy — instead of challenging someone with dementia, build empathy by understanding their feelings. For example, if a person is waiting for their partner to come home, you can acknowledge how they feel and empathise with them. It doesn't matter that they don't remember that their partner has died.
• Music therapy — people with dementia often remember old songs. Familiar tunes can unlock memories and feelings. However, it's important to know their musical likes and dislikes.
• Reminiscing — is a way of remembering past events (for example by reading an old letter or looking at childhood photographs). It usually triggers positive memories and feelings, even if they can no longer speak.

A memory book can store photographs, letters, stories and drawings. This can help a person who feels confused about the present go back to happier times.

Resources and support

To learn more, try these resources:

• Visit Dementia Australia or call 1800 100 500 to speak to an experienced counsellor. They support people living with dementia and their family or carers.
• Dementia Support Australia also has a 24-hour helpline: 1800 699 799. They offer advice and support to family and friend carers of people with dementia.
• Contact My Aged Care to see if government-funded residential respite care is available.
• 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 24 hours a day, 7 days a week.

Resources in languages other than English

• The Dementia Australia website has resources and videos in many languages.
• The South Western Sydney Health Resource Directory has an Easy Read guide to dementia.
• The National Ageing Research Institute (NARI) provides dementia content in nine languages: Arabic, Cantonese, Mandarin, Hindi, Tamil, Greek, Vietnamese, Spanish and Italian.