A new report has found that an estimated 41 million cases of dementia across the globe are undiagnosed.
This, combined with new treatment breakthroughs could result in a ‘tsunami of demand’ for diagnosis, which could overwhelm unprepared healthcare systems in Australia, according to Dementia Australia and Alzheimer’s Disease International (ADI), the global federation for over 100 Alzheimer’s and dementia associations across the world.
McGill University in Montreal, Canada was commissioned to deliver ADI’s annual World Alzheimer Report 2021 Journey through the diagnosis of dementia, which finds that 75 percent of the 55 million people with dementia are not diagnosed worldwide.
This figure is as high as 90 percent in lower-to-middle-income (LMIC) countries.
For the first time in decades, a new drug treatment for Alzheimer’s disease is on the market in the US, with the FDA conditionally approving ‘aducanumab‘ for use in early Alzheimer’s patient populations.
Without a diagnosis many people living with dementia worldwide and in Australia may not be able to access new treatment breakthroughs.
Furthermore, blood biomarker testing for dementia diagnosis is expected to be available in the coming years, making diagnosis more accurate than ever before.
McGill University Professor Emeritus and World Alzheimer Report author Serge Gauthier says these new diagnostic tools will increase pressure on healthcare systems to provide diagnoses.
“The emergence of quicker, easier, cheaper, less invasive blood biomarker diagnostic tools will combine with emerging drug treatments and the global ageing population to create a tsunami of demand for diagnosis putting extreme pressure on healthcare systems,” Gauthier says.
“Now that for the first time in decades, an Alzheimer’s drug treatment targeting a key protein involved in the disease process is available in the US and may soon be available in other parts of the world, people will not be able to access them without an accurate diagnosis.”
According to the new World Health Organisation (WHO) statistics, dementia is the seventh leading cause of death among all diseases worldwide.
Concerningly, stigma is still a major barrier to diagnosis, with the World Alzheimer Report survey revealing that one in three clinicians believe that nothing can be done, making diagnosis futile.
Paola Barbarino, ADI CEO, says that a lack of awareness and stigma within healthcare systems is hampering efforts to support people living with dementia.
“This misinformation in our healthcare systems, along with a lack of trained specialists and readily available diagnosis tools have contributed to alarmingly low diagnosis rates,” Barbarino says.
“We need healthcare systems across the globe to ensure that their national dementia plan includes specialist dementia training and adequate diagnostic equipment.”
“For over 20 years we have been calling on world governments to implement national dementia plans, and frankly, progress has been too slow,” Barbarino says.
“Now the tide has turned, and demand is set to skyrocket. Governments must respond now.”
The WHO global action plan on dementia stipulated that half of countries should be diagnosing 50 percent of the expected number of those living with dementia, however ADI data suggests that the diagnosis rates in Member States could be as low as 25 percent in higher income countries and 10 percent in lower-middle-income countries.
Furthermore, 90 percent of clinicians identified additional delays and wait times for providing diagnosis due to the ongoing COVID-19 pandemic.
Just one in three people with dementia and their caregivers have had in-person access to a clinician throughout the pandemic.
Dementia Australia Chair, Professor Graeme Samuel AC says obtaining a timely diagnosis of dementia is crucial because it enables a person with dementia to adjust to the diagnosis, access early support and treatment options and to prepare for the future in an appropriate way.
“This might include making legal and financial arrangements, changes to living arrangements, and finding out about treatment, supports and services that will enhance quality of life for people with dementia and their family and friends,” Samuel says.
“Recent measures announced in the Australian Federal Budget 2021 are strongly focused on more consistent dementia pathways including better access to a timely diagnosis.”
Nell Hawe, who was diagnosed with younger onset dementia at age 52, says her diagnosis experience was harrowing.
“Experts were complacent and they wanted to brush it off and call it stress.
“I went for two years before someone would even listen. I felt frustrated that I wasn’t listened to despite knowing what I was experiencing was the early stages of dementia,” Hawe says.
“I could have been on medication during that two years and I do wonder what interventions I could have had in this time.
“What services and supports did I miss out on?
“Are my symptoms worse because of the delay in my diagnosis?
“Two years is a long time when you have a degenerative, chronic disease with no cure.”
Three in four clinicians ranked the increasing number of people seeking a diagnosis, as global populations age, as a major challenge in the future, followed by people seeking diagnosis due to self-testing.
Barbarino says that this shows that it’s more important than ever for world governments to be planning appropriately for the oncoming dementia diagnosis demand.
“People with dementia have a right to know their diagnosis, so they can know what to do next,” says Barbarino.
“This is a progressive disease, and figures are growing every year. There is a perfect storm gathering on the horizon and governments all over the world should get to grips with it.”