When Jenny Lloyd heard her GP utter the words “yes, well, you have Alzheimer’s dementia” she described that moment as “horrendous”.
Jenny began to notice changes – she was having trouble doing simple things at home, like cooking meals, things Jenny said were once “easy-peasy” were getting “harder and harder”.
“It was horrendous. In my terminology that’s exactly how it was,” Jenny said.
“The delivery of it, I thought was pretty bad.”
Jenny was speaking to a full-house at the Florey Institute of Neuroscience and Mental Health where the Diagnosing dementia – what does the future hold? forum was held.
The Florey Institute of Neuroscience and Mental Health and the CRC for Mental Health held the forum in partnership with the Dementia Australia Dementia Research Foundation.
ABC Big Ideas host Paul Barclay was MC at the event and a panel of experts included Dementia Australia National President, Professor Graeme Samuel; Professor Ashley Bush from the CRC for Mental Health and Florey Institute; Dementia Australia Dementia Research Foundation Fellow Doctor Rachel Buckley from the University of Melbourne; Doctor Shaun Frost from the CSIRO and Jenny Lloyd.
Among some of the many challenges facing researchers, and which can make an early and accurate diagnosis of dementia difficult, is the complexity of the condition.
Professor Ashley Bush explained the difference between Alzheimer’s disease and dementia and spoke about another common form of dementia, vascular dementia.
“Dementia means brain failure,” Professor Bush said.
“It’s a diagnosis that we give in medicine to people whose brain has deteriorated to a point where they are significantly disadvantaged in their functioning or day-to-day activities.
“There are many different causes of dementias, they don’t just occur overnight, they creep up on you.”
Professor Bush said Alzheimer’s disease was one of the most common forms of dementia and it was the kind of condition where you “lose a little bit everyday”.
He said it was a gradually deteriorating type of condition, quite different to say vascular dementia - which accounts for around 10-15% of dementia cases and is generally caused by an interruption to the blood supply in the brain, either due to a small blockage, stroke or series of smaller strokes.
“It’s quite different to what we think is going on in Alzheimer’s disease and the losses are more sudden. In vascular dementia there can be a sudden drop in function,” he said.
Work is being done to develop better and simpler diagnostic tools for doctors to use in diagnosing dementia, so a diagnosis can be made earlier and hopefully before disease in the brain causes too much damage - which can then be cleared away potentially in the future either pharmacologically or slowed or halted with non-pharmacological interventions.
Professor Graeme Samuel urged caution on buying into media hype and claims of cures or radical breakthroughs.
Professor Bush concurred, saying that Alzheimer’s disease and dementia was the biggest disease where there was nothing to offer in terms of disease modifiers.
He went on to say that much of the research would outlive many of the current researchers, but it was important not to give up the search for diagnostic tools and disease modifiers.
“Anyone purporting to know what the cause is, or claiming to have a cure is misleading you,” Professor Bush said.
AADRF Research Fellow Dr Rachel Buckley said non-pharmacological interventions like exercise, diet and social activity could have positive benefits to cognition and overall wellbeing even if there is a diagnosis of dementia.
“We cannot deny this need for wellbeing and healthy ageing even if there’s a diagnosis present and one of the things we often tell patients is keep up your leisure activities, keep up your hobbies, go and do new things as much as you can and challenge yourself mentally,” she said.
“Two really important things is one getting up and going for a walk… and the other thing is just to maintain your social life as much as you can – it’s little things like this, that actually make a very big difference.
“It may not be necessarily going to be a huge influence on the amount of Amyloid Plaques you have in your brain - but there is some evidence there, I think, that suggests that you will show benefit cognitively and you will show benefit in terms of your wellbeing and quality of life.”
For Jenny, who is living with dementia, one of the most vital things you could do if there were concerns about dementia was to get a diagnosis.
“Go and get a diagnosis ASAP, find out exactly what is going on and you can work with it,” she said.
“Don’t pretend as if nothing is going on, because this can make it worse for everyone else.”
If you have concerns about your own or someone else’s memory or are noticing a decline in function or ability consult a trusted health care professional or phone the National Dementia Helpline on 1800 100 500 for dementia or Alzheimer’s disease related information, advice or support.
The forum was later broadcast on the ABC Radio National’s Big Ideas program during World Mental Health Week. You can listen here to the Diagnosing dementia – what does the future hold? podcast.