What I wish I had known when I was diagnosed with dementia

We asked people living with dementia or mild cognitive impairment what they wished they had known when they were first diagnosed.

They also shared what they wished they had done following their dementia diagnosis.

Here’s what they told us:

What I wish I had known when I was diagnosed

Linda, living with younger onset Alzheimer’s disease (pictured above with her husband Grant):

“When I was diagnosed with Alzheimer’s (disease) I had never been so scared in my life. 

“I wish that I had more information available to me so that I could deal with my diagnosis more calmly. 

“I am happy to say that I have received amazing support from my family, medical team and Dementia Australia.

“I urge anyone with this diagnosis to use every avenue available to learn more about the disease and how to live with it without the stigma attached to it.

“Don’t be afraid to share your diagnosis. It is often easier to explain your diagnosis to people rather than them imagining the worst for scenario for you.”

Robyn, living with Alzheimer’s disease:

“I wish I had known that I was not alone and that support was available via Dementia Australia. 

“When I received my diagnosis I was advised to move on with my life and do everything on my wish list. 

“I totally appreciate their empathy but I wanted to understand the how, what and why of dementia. 

“During the next five years I focused on my body and mind, and wanted my brain to receive the best messages it could for as long as it could including sight, hearing, diet, exercise and meditation.”

Lesley, living with younger onset dementia:

“I wish I had known about NDIS (for those aged under 65) and the services I now happily receive. 

“If it wasn’t for my caring and knowledgeable doctor and Dementia Australia, I wouldn’t have known about the eligibility criteria for NDIS and I would not have applied.”

Steve, living with younger onset Alzheimer’s disease

“You are far from alone. There is nothing to be ashamed about – this is just a disease and a positive result is around the corner. 

"There are many drug studies and trials with positive results and there are more to come.”

Anne, living with dementia:

“Most people I interact with had some knowledge of Alzheimer's disease but Lewy body dementia (LBD) – what's that? 

“I wish I had known about the different types of dementia at this early stage in order to ask the right questions of the health professionals, particularly about my medication.”

Susan, living with Younger Onset Alzheimer’s disease:

“What I wished I had known when I was diagnosed with Alzheimer’s (disease) is where to go for information and practical help with applying for a disability pension, NDIS and support to live a quality life.”

Where to go for support?

Contact the National Dementia Helpline for more great advice and support. 

This free, confidential service is available 24 hours a day, seven days a week, 365 days a year on 1800 100 500 or via our live chat.

What I wish I had done when I was first diagnosed

Susan, living with younger onset Alzheimer’s disease:

“I wish I had accepted the help that was offered to me. 

“At the time I was fiercely independent and used to doing everything myself.”

Linda, living with younger onset Alzheimer’s disease:

“Accept all the help, assistance and advice you can get from any reliable, informed resource and not hide away or be embarrassed by it.

“Admit if you don’t remember how to do something and ask for help – getting upset with your brain just makes your situation worse and more stressful. 

“In my experience with Alzheimer’s (disease), stress is the worst thing to have as it exacerbates the symptoms and causes more confusion.

“Be kind to yourself and ask for assistance when you need it.”

Anne, living with dementia

“I wish I had been more proactive in seeking information from the various health professionals involved in my care. 

“Fortunately I have a passionate advocate with experience in navigating the health system.”

Robyn, living with Alzheimer’s disease

“We all do things differently. 

“I think I needed my own time to get myself sorted emotionally and to work with my family members as they support me.”

What to do following a diagnosis

Dementia Australia provides a range of information, resources, education sessions and programs for people diagnosed with dementia as well as their family and carers.

You can find out more on our What next? After your diagnosis page or contact the National Dementia Helpline.

You can also listen to the What to do after being diagnosed with dementia episode of our Hold the Moment podcast.

How do I seek a diagnosis?

Dementia can only be diagnosed with certain medical examinations so if you are concerned that you or someone you know may have dementia, speak to your doctor or medical professional.

You can also call the National Dementia Helpline on 1800 100 500 for advice on seeking a diagnosis.