Dementia – What to Expect

Finding out that you or a family member may have dementia can be overwhelming. You might have a lot of questions. There is a lot to learn but help is available. Your local doctor (GP) can help you understand what may happen next, and how to find the information and help that you, your family, or friends may need. The information below outlines where to find the services and supports you may need now and in the future.

The Dementia Journey

1. Visiting your doctor

Your local doctor (GP) will ask you questions about the changes you or others may have noticed, your lifestyle, family history and other medical history.

They may do a physical assessment and ask you to complete some tests that assess your memory and thinking. The assessment may take place over multiple appointments.

After the assessment, they may refer you to see a number of other health professionals for more tests. If you can, take another person with you to your appointments. They can support you and help you remember important information.

 Preparing for your visit

  • Book a long appointment
  • Take a list of your medications
  • Write down changes you have noticed (forgetting recent events, confusion, changes to your personality) and any concerns you, your family or friends have
  • Ask the doctor to write down the next steps.

Questions to ask your doctor

  • Is there information I can take away?

 

2. Tests and referral to specialists as needed

If your local doctor (GP) thinks you might have dementia, they can refer you to a specialist doctor such as a neurologist or geriatrician, or a Cognitive, Dementia and Memory Service (CDAMS).

They will check for other possible causes for the changes you have noticed, and may refer you for more tests such as:

  • Blood, urine
  • Scans to check your brain
  • Cognitive and neuropsychological tests to take a
    deeper look at your memory, attention, thinking and problem solving
  • An assessment by a psychiatrist to check for other
    conditions and to manage symptoms that can occur
    alongside dementia.

You may need multiple appointments with your specialists before you receive a diagnosis.

 Questions to ask your doctor

  • Do I need to fast before any of these tests?
  • How much will the specialists cost?
  • Can I access financial support for specialists?
  • What other specialists will be involved?
  • Is there information I can take home with me?

 

3. Initial management options

If you have been told you have dementia, there are some things you can do that may help to slow the progression:

  • Eat a healthy diet
  • Be physically active
  • Be socially connected
  • Quit smoking
  • Limit or avoid alcohol and other drugs

Certain medications can reduce some symptoms and the progression of dementia too. How well they work depends on your type of dementia.

There are health professionals who can help you to make healthy lifestyle changes (for example dietitians and exercise physiologists) and support your independence (for example, occupational therapists and physiotherapists). Others can help you with your mood and mental health (counsellors, psychologists).

Local support groups can help you, your friends and family to connect with others and learn how to live with dementia. For more information, ask your local doctor (GP), or visit our local Dementia Directory.

 Questions to ask your doctor

  • What type of dementia do I have?
  • Can I still drive? Can I still work?
  • How might dementia affect me over time?
  • Are there any medications that can help me?
  • Who can help me to make lifestyle changes?
  • Are there other treatments I could try?
  • Where can I find reliable information? Is there information I can take home with me?

4. Ongoing management and support networks

Having regular check-ups with your local doctor (GP) will help to ensure your overall health is being taken care of.

You can also talk to your doctor if you or your carer have any questions about your dementia or need any support, especially if you or your carer have noticed any changes.

Your doctor can help you and your carer to find the right support for you. This includes access to social supports, home help, other health professionals (such as counsellors, occupational therapists, physiotherapists, speech pathologists, dietitians) and respite services.

They can also help you with Advance Care Planning, something that is recommended for everyone.

It is also important for your carer to have regular check‑ups with their doctor (at least yearly), so their health and wellbeing is taken care of.

 Questions to ask your doctor

  • How often should I have regular check‑ups/reviews and who should I see?
  • Do I need to bring a carer or support person to the check-ups?
  • What can I do to plan my future?
  • What types of support or services can my carer and I get and what do we need to do to access these?

 

 

 

 

Last modified: 11 September, 2023

Tips

  1. If you can, take another person with you to your appointments, this can be a family member, carer or friend.
  2. If you need an interpreter, or to access the National Relay Service, let the receptionist know when you book your doctor’s appointment.
  3. If you can, write down or have the doctor write down what you need to do next.
    Ask the health provider or doctor to speak to you directly, not just the person you have attended the appointment with.
  4. Ask your health provider or doctor to book a longer appointment if you need to discuss a number of things.
  5. Download the Dementia Australia checklist in Section 10 of The Dementia Guide to help you at each stage of the journey.

Share