Dementia – What happens after diagnosis?

If you have been given a diagnosis of dementia in Australia, I suggest you contact two organisations:

  1. Alzheimer’s or 1800 100 500. This is where you will find all the information you need on all of the different dementias. There are over 100 Fact Sheets that you can download or ask to have posted to you. The Fact Sheets provide information about every aspect of dementia including advice for carers about how to manage specific symptoms and behaviours. Alzheimer’s Australia also offer courses for carers and health professionals, run support groups for carers, and organise activities for those with dementia. They have trained counsellors with personal experience of looking after someone with dementia and they are available on the phone from 9am to 5pm every weekday. The counsellors are there to answer any questions or to lend a listening ear. They are wonderful and have helped me enormously, even if it’s just to say, ‘I understand what you’re going through.’
  2. My Aged or 1800 200 422. This is an Australian Government website and phone line that helps you find out what services are available to assist you in maintaining the best quality of life, either in your own home or in an aged care facility. The service is not only for people with dementia but anyone who has a physical or mental health issue that interferes with their ability to live independently. In order to access any services, the person will need to undergo a friendly assessment. You can go online and arrange for an assessment yourself but the process is complicated to say the least. I recommend you ask your GP to make the referral for you. Most GPs will do this without prompting but in case they don’t, ask them to organise an ACAT (Aged Care Assessment Team) to visit you at home. I believe it’s critically important to have a support person present while the assessment is carried out because a person with dementia may struggle to comprehend what is going on and may not remember what happened afterwards.

ACAT will speak with you about what you need in order to live well and stay safe. With your permission, they will see if you might benefit from having rails installed, trip hazards removed or other home modifications that will make daily life easier. They will determine whether you need someone to help you clean, cook, shop, shower, remind you to take medications or provide social stimulation. They will also inform you of local services that provide meals, social activities or transport. The government will subsidise the cost of your required services so that they remain within your means. If you wish to move into a residential care facility, ACAT can also help you find one that is best suited to you.

Another brilliant Australian initiative is the National Companion Card Scheme. This is not only for people with dementia but anyone who has a permanent disability and needs a carer or companion to accompany them when attending specific events, activities or venues. A Companion Card means that your companion can attend the event free of charge because without them you wouldn’t be able to go. Eligible events include movies, opera, ballet, musicals, theatre, parks and much more. Public transport services also accept the Companion Card so your companion doesn’t have to pay when travelling with you on buses, trains or ferries. Whenever you want to go somewhere that charges an entry fee or requires you to purchase a ticket, ask if they accept the Companion Card. Visit to download an application form. Your doctor will need to complete one section of the form.

It can be exhausting setting everything up but it’s worth the initial effort. Most importantly remember that you are not alone. Don’t be afraid to ring a friend, an Alzheimer’s counsellor or Lifeline 13 11 14 (24 hours, 7 days a week). In my experience, the biggest barrier to receiving help is not asking for it.

This article is part of a series on dementia.
Discover the rest of the series below:

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