Testing and diagnosis

Worried about your memory? - Knowledge can be the key

If you or someone else has noticed signs that your memory, thinking, behaviour and mood are changing, it can be scary. It’s the same if you notice signs in someone close to you. What if it’s bad news? You might feel it’s better not to find out.

That’s a normal feeling. But it is definitely better to find out as early as you can, because:

if it’s not anything serious, you can put your mind at rest
if it’s some other condition than dementia, you may be able to start getting treatment
if it’s a dementia diagnosis, the sooner you know, the more you can do.

Making the decision to talk to your doctor

If you’re experiencing warning signs and don’t feel ready to talk to your doctor yet, talk to someone else who you trust.

Tell them what you’ve noticed and what you’re worried about. If you’re comfortable talking about your fears, talk about them too. You don’t have to change your mind or do what the other person tells you. It’s just a way for you to put your thoughts into words.

Talking about things can be a good way to make them feel less worrying.

If you’ve noticed warning signs in someone close to you, it’s okay to gently suggest a doctor’s visit. They might not want to go: that’s normal too. Be calm and caring, and give a lot of reassurance.

If you think it’s definitely time for them to see a doctor, you might suggest a doctor’s visit for another reason. Make sure it’s a real reason — don’t make anything up. A regular check-up is fine. You can even suggest that you both get check-ups so they feel less alone.

If the person refuses to visit the doctor:

Talk with other carers who may have had to deal with similar situations
Call the National Dementia Helpline on 1800 100 500.

First steps: talking to your doctor

The first person to talk to about getting tests for changes in your memory, thinking, behaviour and mood is your doctor.

When you go to the doctor, take with you:

a friend or family member for support, especially if they’ve also noticed changes in you
a list of the changes you or someone else has noticed in you
a list of all the medications you take

Your doctor will talk with you about the changes. They might ask:

how strong these changes are
if they come and go
if they’re getting worse
how often you have them
when they started.

They might also ask you about your diet, whether you smoke or drink, and your medical history. If you’re completely open and honest with your answers, the doctor has the best chance to work out what’s happening.

Depending what they find, the doctor might recommend some more tests, or refer you to a medical specialist. That specialist might be a:

neurologist: a doctor who specialises in the brain and nervous system
geriatrician: a doctor who specialises in conditions affecting older people
psychiatrist: a doctor who specialises in mental health.

Getting tested

There isn’t one single test that tells you if you have or don’t have dementia.

Instead, doctors will do several different kinds of test. The results of these tests will help them rule out some conditions, and get closer to working out what’s causing your changes.

That process can take time. Even after testing, your doctor may tell you it’s ‘possible’ or ‘probable’ that you have one or more conditions.

They might tell you to wait and take more tests in a few months or a year. They will compare the new results with the old to see what’s changed. This can help them make a more certain diagnosis.

Before you agree to any tests, it’s okay to ask:

What tests are you recommending?
Who will do the tests, and where?
How long will they take?
Do I need to prepare for them?
Do they hurt?
What do they cost?
Who will tell me the results?

If you feel you aren’t getting the answers you need, or you don’t understand, it’s okay to ask again. If you’re not comfortable with your doctor, you can always go to another doctor at any time.

Here are some of the common tests your doctor might recommend:

Your medical history

The doctor will ask for as much information as you can give about your medical history. They might ask about:

the medical conditions and injuries you’ve had in the past
the changes you or someone else has noticed in your memory, thinking, behaviour and mood.

The doctor is like a detective, collecting evidence to tell them what might be causing your changes. The more you or the person with you can tell them, the better.

Cognitive tests

‘Cognitive’ means ‘to do with thinking.’ Cognitive tests are used to measure your thinking abilities, like memory, concentration, spatial awareness, problem solving, counting and language.

Finding out which of your thinking abilities are affected, and how much, can help the doctor work out what condition is causing the changes.

They can also be used to diagnose depression, which can cause similar symptoms to dementia.

Here are some of the most common cognitive tests:

Mini-Mental State Examination (MMSE)

The MMSE is the most common test for cognitive changes due to Alzheimer’s disease and other types of cognitive disorders that can cause dementia. It tests your reading, writing, orientation and short-term memory. It takes about five minutes, and you can you usually do it in your doctor’s office.

The MMSE might include things like:

saying where you are and what day it is
subtracting numbers
spelling a word backwards
remembering three unconnected words
copying a diagram on paper.

Alzheimer’s Disease Assessment Scale – Cognitive (ADAS-Cog)

The ADAS-Cog is more thorough than the MMSE and can be used for people with mild symptoms. It takes around 30 minutes and is usually given to you by a specialist or psychologist.

Neuropsychological tests

‘Neuropsychological’ means ‘to do with your brain and mind’. Neuropsychological tests measure your thinking, memory and other skills in detail.

A typical testing session can take up to two hours. You might do the test over more than one visit. In the private health system, this test may be quite expensive.

A physical examination

Your doctor may examine you to look for physical causes for your changes. Early warning signs of dementia can sometimes be caused by:

vitamin deficiency
infection
metabolic disorders
side effects from drugs

Treating these other causes can help with your changes.

The doctor might also check your heart and lungs. If you smoke, you might be sent for a chest x-ray.

Your doctor may ask you for a blood and urine sample. These will be tested in a lab. The results can tell how well some of your important organs are working, and if you have illnesses that might be causing or adding to your changes.

Brain scans

Seeing what’s going on in your brain gives your doctor a lot of information to help understand what’s causing your cognitive changes.

Brain scans can detect brain tumours, strokes or brain haemorrhages, brain shrinkage and increased pressure of fluid in the brain. These can cause or add to the changes you’re experiencing.

Scanning your brain is usually painless and doesn’t involve any surgery.

Brain scans don’t always give strong clues, but they can be very useful for helping work out what’s causing your changes.

Here are the common scans your doctor might recommend:

Magnetic Resonance Imaging (MRI)

MRI scans use magnets and radio waves to make a very clear 3D image of your brain. There is no radiation involved.

Doctors can use your MRI results to:

measure how your brain has changed
rule out some causes of your changes
decide which causes are more likely.

Computed tomography (CT or CAT) scan

CAT scans involve quickly taking many x-rays photos of your brain from different angles. These photos are then put together to make a 3D image of your brain.

Doctors can use your CAT scan results to:

measure how your brain has changed
rule out some causes of your changes
decide which causes are more likely.

CAT scans and MRIs work differently, so they take a slightly different picture of your brain. Having both can give doctors more clues about what’s happening in your brain. Generally, an MRI is more accurate, but it can’t always be ordered on Medicare by your GP — it often requires a specialist.

Positron Emission Tomography (PET) and Single-Photon Emission Computerized Tomography (SPECT)

In PET and SPECT scans, a small amount of a tracer that emits a detectable signal is injected into your body. Scanners then measure these emissions.

Glucose PET scans show visual images of the activity in your brain.

Amyloid PET scans aren’t common, but they accurately detect the main protein associated with Alzheimer’s disease.

SPECT scans show the blood flow to various regions of your brain.

Genetic tests

Genetic testing for dementia is rarely required, because genetic causes of dementia are rare. For more information, see our page on genetics and dementia.

Cerebrospinal fluid protein tests

Cerebrospinal fluid (CSF) is a clear fluid that cushions your brain and spinal cord, like the water around you in a bath.

Doctors can take a sample of your CSF through a lumbar puncture, or spinal tap. They will then test your sample for proteins that are associated with dementia. This procedure is mostly used in research in Australia, but it’s becoming more common.

Getting a diagnosis

At some point, your doctor will be ready to give you a diagnosis. This can be a very anxious moment, but you have choices.

Choosing to know your diagnosis

If you are the person being tested, you can decide whether or not you want to know your diagnosis.

Some doctors will automatically tell a patient what their diagnosis is. If you decide not to know, or want to wait and think about it, tell your doctor before you start with tests.

If you’re caring for the person being tested and they’re not able to make an informed choice, you can make the choice to tell them or not tell them. This can be a very hard choice. Some questions to ask are:

What would their choices have been if they were able to understand the implications?
Have they ever given an indication in the past as to what they would have wanted in medical situations like this?

If it helps, talk to close family and friends about what to do. Your doctor or specialist might also be able to give you advice. You can also call the free National Dementia Helpline any time on 1800 100 500.

Who can diagnose you?

Only a medical professional who has your test results can diagnose you. This usually means your GP or a specialist, often working together.

In Australia, a specialist must confirm a diagnosis of Alzheimer’s disease for you to get subsidised Alzheimer’s medications. This can be done by your GP speaking to a specialist — a specialist does not always need to see you personally.

What the doctor will tell you

After some early tests, your doctor may give you a preliminary diagnosis. A preliminary diagnosis means ‘this is what we think now, but more tests are needed.’

Having a preliminary diagnosis means you can get started with treatment, planning and making life changes. More certain test results can take time, so a preliminary diagnosis means you don’t have to wait.

The doctor might tell you that your changes are very mild, and not related to dementia.

They might tell you that you have mild cognitive impairment (MCI). This means your thinking and memory are affected, but there is not enough effect on your daily activities to call it dementia.

But they might tell you that you have a form of dementia.

Both mild cognitive impairment and dementia have many causes, and the tests described above can help to determine the case.

If you are diagnosed with dementia

If your doctor diagnoses you with a form of dementia, there’s no wrong reaction to have.

Some people are relieved to know there’s a cause for what’s happening. But for many people, getting a diagnosis of dementia can be frightening.

It can also be a shock for families, friends and carers of someone getting a diagnosis of dementia.

When your doctor tells you the diagnosis, you might find it hard to take it all in. It’s sometimes hard to think of the questions you want to ask in the moment.

It’s okay to book another appointment with your doctor, to give you time to think of everything you need to ask or say.

Whatever your experience of diagnosis, Dementia Australia is here for you.

The free National Dementia Helpline is for you. You can call, email or webchat, any time, day or night. You can talk about the diagnosis, or any other aspect of dementia. No question is too small or too big.

There’s also a whole section of this website devoted to helping you cope with the news and adjust to life with dementia.