Take a breath.
A dementia diagnosis can bring shock, sadness and sometimes relief at finally having an answer. All of these feelings are normal. You don't have to sort everything out this week.
The person living with dementia is still the same person. Keep them at the centre of every decision. Involve them as much as they're able, for as long as they're able.
Understand the diagnosis.
Ask the doctor who made the diagnosis:
- What type of dementia is it?
- What changes might we see over the next year?
- Are there treatments or medicines that could help?
- Which other health professionals should be involved?
- Who do we call if things change suddenly?
Write your questions down before each appointment, and bring someone along to take notes. Ask for a copy of the diagnosis letter or report. You'll need it for the NDIS and for many other things.
You can read about each type of dementia on our conditions pages.
Plan legal and money matters early.
In Queensland, an adult can make an enduring power of attorney (EPOA). It names the people who can make personal, health and financial decisions for them if they can't. An advance health directive records their wishes about future health care.
These documents can only be made while the person understands what they're signing. That's why it's best to do this soon after a diagnosis. A solicitor can help.
While you're at it, look at the will, bank accounts, bills and passwords. Talk about what the person would want in the future while they can take part in the conversation.
Don't leave legal planning too late. If a person can no longer make their own decisions and there's no enduring power of attorney, family may need to apply to the Queensland Civil and Administrative Tribunal (QCAT) to have a guardian or administrator appointed. That takes longer and adds stress at a hard time.
Talk about driving.
In Queensland, licence holders must tell the Department of Transport and Main Roads about a medical condition that is likely to affect safe driving. Talk to the doctor about driving early. Plan other ways to get around before driving has to stop, so the person keeps their independence.
Work and money
If the person is still working, talk to their doctor before talking to their employer. Ask about leave and changed duties. Check whether their superannuation includes insurance for illness or disability. A financial counsellor or adviser can help you see the whole picture.
Find out about the NDIS.
If the person is under 65, they may be able to get support from the National Disability Insurance Scheme (NDIS). They must apply before their 65th birthday.
The NDIS can fund help at home, support to keep up work, hobbies and friendships, therapy, equipment and, later on, supported living. Our guide to the NDIS and dementia explains who can apply and what evidence helps.
If the person is 65 or older, they can't apply for the NDIS. Support usually comes through the aged care system, and My Aged Care on 1800 200 422 is the place to start.
Look after yourself too.
Caring for someone living with dementia is a marathon, not a sprint. Tell your own GP that you're a carer. Say yes when people offer to help.
Carer Gateway, an Australian Government program, offers free support for carers, including counselling, on 1800 422 737. Plan regular breaks early, before you're exhausted. Our respite guide explains the options.
This guide is general information, current at the date shown above. It isn't legal, financial or medical advice. For decisions about an NDIS plan, contact the NDIA on 1800 800 110.