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Living with dementia

“I have been diagnosed with dementia”

Most information about dementia is written for the people around you. This page is written for you. It is short on purpose, and you do not have to read it all at once.

Where to start

A dementia diagnosis is frightening, and the fear is usually worse at the beginning than the reality is for a long while afterwards. Many people live well for years after being told. The things that help most are ordinary: keeping your routines, staying connected to people, staying physically active, and sorting out the paperwork early so that you decide your future rather than someone else deciding it later.

You are still you. Dementia changes what you can do; it does not change who you are or what you are owed by the people caring for you.

Worth doing in the first few months

Not all at once. One at a time, with someone you trust helping.

  1. Tell one or two people you trust. Carrying it alone is harder than telling people. You decide who and when — you are not obliged to tell everyone.

  2. Appoint someone to make decisions if you cannot. An enduring power of attorney for money, and an enduring guardian or health attorney for medical and personal decisions. The forms differ by state — in Queensland they are the Enduring Power of Attorney and the Advance Health Directive. A solicitor or your GP can help. Do this while it is unquestionably your choice.

  3. Write down what matters to you. An advance care directive records what you would and would not want if you became very unwell. It is not only about refusing treatment — it is your chance to say what a good day looks like, what frightens you, and what you want the people caring for you to know.

  4. Talk to your GP about driving. A diagnosis does not automatically end your licence, but it does have to be addressed, and there is a legal duty to notify the licensing authority. Many people keep driving for some time, usually after an assessment. Your GP can talk you through what that involves and help you plan ahead, so that any change happens on your terms and at a time you have had a say in.

  5. Ring the National Dementia Helpline. Free, 24 hours, on 1800 100 500. They also run counselling and peer support programs where you can talk to other people who have been diagnosed. Many people say this helped more than anything else early on.

  6. Get your hearing and eyes checked. Untreated hearing loss makes thinking harder, makes conversation exhausting, and makes everything about dementia worse. Treating it is one of the few things with real evidence behind it 3839.

What helps day to day

  • Keep your routine. Familiar patterns take less effort than new ones. Big changes are harder now than they used to be.

  • One thing at a time. Doing two things at once is where most people notice the difficulty first. It is not a failure — it is how the condition works.

  • Write things down. A diary, a whiteboard, a phone alarm. Using a memory aid is sensible, not a defeat.

  • Keep moving. Regular physical activity is among the better-supported things you can do, for your mood and independence as much as your thinking 43.

  • Keep seeing people. Withdrawing is the most common response to a diagnosis and one of the least helpful. Social isolation is a recognised risk factor in its own right 4.

  • Sleep, and go easy on alcohol. Both affect thinking more than they used to. Alcohol in particular.

  • Do the things you enjoy. This is not a consolation prize. Meaningful activity is one of the strongest protective factors against distress in dementia.

What you should expect from the people caring for you

To be spoken to directly, not talked about over your head. To be asked what you want. To have your background, culture and preferences written into your care plan and actually used. To have pain taken seriously. To be told what any medicine is for, what it might do to you, and when it will be reviewed — and to be asked before it is started.

These are not favours. Under the strengthened Aged Care Quality Standards they are what you are entitled to 55.

Pages worth reading, in this order

You do not need to read all of these, or read them now. This is simply the order that tends to make most sense.

  1. 1 Understanding dementia 8 min read What the diagnosis means, and what the different types are. Read the first part and stop when you have had enough.
  2. 2 Living well, and supporting families 10 min read The practical things — communication, driving, legal paperwork, and the free services you can ring today.
  3. 3 Risk reduction and brain health 12 min read What is genuinely worth doing for your brain, and what the evidence does not support. Treating hearing loss has better evidence behind it than any supplement.
  4. 4 Medicines in dementia 13 min read If a medicine has been suggested, this explains what it does and does not do. Worth reading before you agree to anything.

Browse every topic instead →

Sources cited on this page

  1. 4 Livingston G, et al. Dementia prevention, intervention, and care: 2024 report of the Lancet standing Commission. Lancet. 2024. View source
  2. 38 Lin FR, et al. Hearing intervention versus health education control to reduce cognitive decline in older adults with hearing loss (ACHIEVE): a multicentre, randomised, controlled trial. Lancet. 2023;402:786–97.
  3. 39 Pike JR, et al. Cognitive benefits of hearing intervention vary by risk of cognitive decline: a secondary analysis of the ACHIEVE trial. Alzheimers Dement. 2025.
  4. 43 Huang X, et al. Comparative efficacy of various exercise interventions on cognitive function in patients with mild cognitive impairment or dementia: a systematic review and network meta-analysis. J Sport Health Sci. 2021.
  5. 55 Aged Care Quality and Safety Commission. Strengthened Aged Care Quality Standards (commenced 1 November 2025). View source
  6. 64 Australian Commission on Safety and Quality in Health Care. Delirium Clinical Care Standard. View source

See every source cited across the dementia section →

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General information only, reflecting the interpretation of Umbrella Aged Care’s GPs of the published evidence as at September 2026. It is not individual medical advice, does not create a doctor–patient relationship, and must not be used to start, stop or change any treatment. Evidence and Australian regulatory and PBS arrangements change — always confirm current advice with the treating GP, pharmacist or specialist.

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