Getting a dementia diagnosis: what’s involved?

Key points:

• There are generally ten common signs that may alert you to dementia
• Getting diagnosed early can be really beneficial and give you more time to put plans in place
• Diagnosis can be a bit of a journey for people with dementia

Dementia is a cognitive illness that impacts a person’s functioning. You can learn more about dementia in our article, ‘What is dementia?‘

It is vital that you get dementia diagnosed as early as possible so you can plan ahead for your life living with the disease.

However, Dementia Australia, peak advocacy body for people living with dementia, described the diagnosis process as “difficult, lengthy and intensive.”

Below are signs and symptoms you should be aware of, how you can go about getting diagnosed, and what you can do after you get your results.

Noticing dementia

Symptoms of dementia may become more noticeable if you start exhibiting more obvious changes or challenges.

Dementia Australia says there are generally ten warning signs for dementia, including:

• Memory loss that is beginning to affect your job skills
• Difficulty undertaking regular or familiar tasks
• Problems communicating or with language
• Becoming disoriented about the time of the day or where you are
• You are making poor judgements, like bad driving decisions
• You are struggling with ‘abstract’ thinking, such as understanding or managing your finances
• Things are going missing or are misplaced, like your house keys
• You are noticing changes in your mood, mannerisms or behaviour
• Your personality has changed, which may be more recognisable by friends or family
• You don’t have the drive to do things, like your normal house chores or going out for social events

While the above are symptoms of dementia, it doesn’t necessarily mean it is. This is why it is so important to go see your doctor or general practitioner to get an official diagnosis.

For example, it is not uncommon for symptoms of depression and anxiety to appear as signs of dementia. You can learn more about this in our article, ‘The link between dementia and depression‘.

Getting diagnosed

If you notice you are having issues with your memory, your ability to think, or changes in behaviour, your first stop on the diagnosis journey is your GP.

Dementia does not have a ‘definitive test’ that tells you that you have the condition, but rather is based on a pool of information from the different tests you undertake.

If you are younger than 65, potentially with younger onset dementia, you will likely face more barriers to a dementia diagnosis.

When you visit your GP, they will take your medical history down – such as your family history, medication you take, how much alcohol you consume, and what changes you are noticing including when issues began to arise.

Then you will undertake a few memory and concentration tests, and have your physical health checked.

From there, if your GP is concerned they can refer you to a memory specialist or a specialist memory centre. However, even if your GP doesn’t think the issue is of concern, you can still request a referral.

These specialists will have experience and knowledge in memory and behaviour that is associated with dementia, and could include neuropsychologists, neurologists, geriatricians, psychogeriatricians, or psychiatrists.

From there, you may undergo more assessments, blood and urine testing, genetic testing, CT and brain scans, and other relevant scans. The aim of these tests is to rule out if another illness or issue is causing these dementia-like symptoms.

These tests can pick up on any brain indicators and biomarkers that may suggest dementia, like damage in the brain or brain shrinkage, or an abnormal change of proteins in the brain.

You will also receive a psychological evaluation to determine your mental functioning abilities, which will see how impacted your memory or thinking is, as well as the expected progression of the dementia over the time of your diagnosis process.

Your specialist will then begin determining what particular cognitive illness is resulting in your dementia, such as Alzheimer’s disease or Lewy body dementia. You can learn more about the different types of dementia in our article, ‘What is dementia?‘

An early diagnosis is essential

While you may be worried about visiting the doctor to get a proper diagnosis of dementia because of the changes it may mean, it is vital you get a diagnosis as soon as possible.

Once you have a diagnosis, you can begin planning ahead and putting in place supports and strategies for assisting you to live well with dementia.

This could mean:

• Organising your estate plan, like legal and financial decisions
• Putting in place an Advance Care Directive
• Discussing with your doctor, family and friends about your wishes going forward
• Preparing and pre-organising the services you want to receive
• Deciding where you want to live
• Having a say in your funeral for the future

This all needs to be done while you have legal capacity, because if you lose capacity to make decisions for yourself, you won’t be able to put any more measures in place later. You can learn more about this in our article, ‘Organising legal matters when living with dementia‘.

You should always have an active role in making decisions about your life and this shouldn’t change after a dementia diagnosis.

Being able to have open conversations with your medical team and family and friends allows you to put in place your wishes and needs for living a happy and long life when you no longer have the capacity to do so yourself.

What to do next

Once your doctor or specialist has given you a diagnosis, you shouldn’t feel like it is the end!

A dementia diagnosis can be scary, however, you can still live a long and happy life surrounded by the people you love.

After you have your results, you may be frightened or worried, or you may even feel relieved that you now know what to call all the issues you have been having.

Take the time to come to terms with your diagnosis and educate yourself about dementia and how it can be managed.

From there, you can begin looking at what living with dementia can look like and what is the best way to ensure you can live your life the way you wish.

See your doctor as often as you need to further understand your dementia diagnosis, ask the questions you have, and know what your options are.

Depending on the type of dementia, you may be able to take medication that can reduce symptoms or slow cognitive decline.

There are many different ways to manage and live with dementia, and having your support networks in place to assist you during this time is really important.

For more information about finding dementia support, read our article, ‘Accessing the right dementia support‘.

We’re interested to hear about your specific dementia journey. Was your diagnosis of dementia a long process? Tell us in the comments below.

Related content:

Accessing the right dementia support
Dementia behaviour changes and challenges
Advocating for a person with dementia

Article originally by Liz Alderslade — updated 01/03/2024