Now I have a diagnosis, what’s next?

You noticed symptoms. You made a doctor's appointment. You may have seen a specialist and undergone further testing. Then you received a diagnosis of dementia. 

If you’re unsure of how to feel or where to turn, in this article we hear from people living with dementia about what they experienced, and what everyone can do to support people diagnosed with dementia.

Where do I start?

Being diagnosed with dementia can be upsetting; however, for some people who have been worried about themselves for some time, the diagnosis can come as a relief.

When you are ready, it is important to tell your family and friends who don’t already know about your diagnosis, that you have dementia.

This might be difficult for you, as a diagnosis of dementia can be very difficult to come to terms with. But it is better for people close to you to have time to adjust to your condition, find out about dementia and learn how best to support you.

Dementia Australia provides a range of services to support people with all types of dementia and their families at all stages of the condition. The first step is calling the National Dementia Helpline on 1800 100 500. The helpline is available 24 hours a day, seven days a week, 365 days a year.

It’s important to remember, no two people will deal with their diagnosis in the same way. There is no right approach to accepting a dementia diagnosis.

When Bill was diagnosed with dementia his world was turned upside down, but with support from Dementia Australia he was able to change his perspective.

“You need to remain positive in your attitude to life, you need to be able to understand and accept, that yes your diagnosis is life shattering, but more importantly you need to be able to change your mindset and when I was able to change my mindset it made me more passionate about living a life that I valued and showing people that you can still actively contribute and participate in our society.” 

Dementia Australia offers confidential counselling and support programs for people living with dementia and their carers. Bill found that support vital.

"In an ideal world, I’d love to see that after anyone receives a diagnosis, they immediately gain access to and have a meeting with someone from Dementia Australia. You don't want to be able to walk out of the doctor’s appointment with this devastating news, without knowing that besides your family and friends, there is an organisation out there who is going to support you along your journey. It's absolutely crucial.” 

Dementia Australia’s support is available at all stages of dementia, even before the diagnosis.

How can I find out what to expect?

Often people find it easier to manage a diagnosis if they can understand the disease and its implications. This knowledge can also assist in beginning to plan for the future.

Associate Professor Michael Woodward AM is a geriatrician and a Dementia Australia Honorary Medical Advisor. He says education and knowledge are key to supporting people diagnosed with dementia.

“Be informed and use the resources of Dementia Australia, especially The Dementia Guide,” Associate Professor Woodward said.

“Be alert and sensitive to their response. People react to a diagnosis in many ways and need many different forms of support. Knowledge always shines light. Lack of knowledge is never, ultimately, beneficial.”

How do I get support?

Whether you are worried about your memory, are seeking a diagnosis, have been diagnosed or are caring for someone who has, we are here to help. No matter who you are, or how you are impacted by dementia we are available 24 hours a day, seven days a week, 365 days a year on 1800 100 500.

Want to read more about diagnosis? Check out these articles: 

Is there a point to getting a diagnosis of dementia? Many people can live well with dementia for many years but as there is no cure is there any point to getting a diagnosis? 

How do we diagnose dementia and what could improve this process? As diagnosis is the first step to living well with dementia for as long as possible, what can help improve the process?

How do you seek a diagnosis if English isn’t your first language? Many people struggle to get a diagnosis, even getting to the doctor can be a challenge. For Rummana the process was made even more difficult by the fact that English wasn’t her mother’s first language.

Can a diagnosis of dementia inspire a positive outlook? When Russ started having trouble with his vision he put it down to his optical prescription and was initially misdiagnosed. Russ says he still hates the day they told him he had dementia. Find out how he changed his outlook. 

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