There’s no such thing as ‘one size fits all’ when diagnosing dementia
Every person living with dementia has a story about being diagnosed.
They may be surprised by the diagnosis or aware it was coming; it might be straightforward or a long and bumpy process.
Each journey is unique to the individual because there is no one size fits all approach to diagnosing dementia and there’s no correct way to react when it happens to you.
When it’s not normal ageing
When Lil first noticed she wasn’t as sharp at work as she had been and was becoming forgetful in her daily activities, she thought it was part of normal ageing.
But after missing some medications she decided to visit her doctor.
This led to a referral to see a geriatrician who performed cognitive testing, ordered an MRI and examined statements about Lil’s cognition, all of which led to a dementia diagnosis.
“I wasn’t prepared for the feeling you get when someone says ‘it’s dementia’ to you,” Lil said.
There’s no right or wrong reaction to have when a doctor diagnoses you with dementia.
You might feel relief knowing the cause of what’s been happening. But for many people, a diagnosis can be a shock and it can be hard to know what questions or information you want in that moment.
Lil said that even though she was blindsided, her GP gave her great information on dementia and explained what her next steps should be.
“She gave me a lot of reading material from Dementia Australia which was helpful then and has been subsequently helpful,” Lil said.
So, how is dementia diagnosed?
Dementia Australia Honorary Medical Advisor Marita Long (pictured above) said there isn’t one single test that can diagnose dementia, so doctors will often do several different kinds of tests to rule out other conditions and work out what’s causing or contributing to your symptoms.
“A doctor will first take a comprehensive history of any changes you may have noticed and, with consent, ask someone who knows you well to see what they may have noticed,” Dr Long said.
“The GP may also want to ask questions about your past medical history, including any medications you are on and a social history.
“We would then use a cognitive assessment tool like the mini-mental state examination (MMSE) or the GP- Cog, perform a physical examination and order some tests – blood tests and even brain scans – most commonly a CT scan.
“We may need to refer on to access an MRI scan or a PET scan to provide a more comprehensive overview of a person’s brain health, then make our diagnosis using all the available information.”
A frustrating journey towards diagnosis
It took six years of appointments, referrals, follow-ups and misdiagnosis before Bob received a dementia diagnosis.
His wife Cheryl said they started to look for answers when Bob had become uncharacteristically apathetic.
He went through a series of tests and referrals including a mental health assessment, a referral to a neurologist and a mis-diagnosis of Parkinson’s disease.
Cheryl said the process was frustrating and she advises others in a similar situation to be assertive when talking to their GP.
“If it doesn't feel right, if you're not happy with the outcome, you've got to advocate for that person,” she said.
Getting the right support
Dr Long explains that because diagnosing dementia can be quite comprehensive it’s important that GPs have the tools and resources they need to offer their patients adequate information and support throughout the diagnostic process.
One resource she recommends GPs use when they are working a patient up for the diagnosis of dementia or exploring any cognitive concerns is Dementia Australia’s GP referrer pack.
The referrer pack includes a dementia service guide, The Dementia Guide, information on the BrainTrack app and a GP referral script pad.
“Whether a patient is seeking a clearer understanding of their diagnosis, guidance on adjusting to change or further education about cognitive impairment, it’s important to validate their concerns,” Dr Long said.
“Providing informed, personalised support for people diagnosed with dementia, at the time of diagnosis, is one of the best tools we have to enable them, their families and carers to adjust to this news and to begin to live well with dementia.”
Want more information?
Whatever your experience of diagnosis, Dementia Australia is here for you.
You can contact the National Dementia Helpline on 1800 100 500 any time, day or night to talk about the diagnosis, or any other aspect of dementia.
There are also a number of resources available to access in our free Dementia Australia Library Service.