Alzheimer’s Disease International (ADI) estimates that 75% of people living with dementia globally are undiagnosed – equating to 41 million people. They say the figure could be as high as 90% in some low- and middle-income countries, where stigma and lack of awareness in dementia remain major barriers to diagnosis.
The findings come from the latest World Alzheimer Report, Journey Through The Diagnosis of Dementia, published by ADI and launched on World Alzheimer’s Day (21 September), which includes results from a global survey which attracted over 3500 responses, from clinicians, people living with dementia, family carers, and dementia associations.
Key findings from the survey include:
- Just 45% of people with dementia and carers felt they were given adequate information at the point of diagnosis.
- Key barriers to diagnosis identified by people with dementia and carers included lack of access to trained clinicians (47%), fear of diagnosis (46%) and cost (34%).
- Key barriers to diagnosis identified by clinicians included lack of access to specialised diagnostic tests (38%), lack of knowledge in making a diagnosis (37%) and the belief that nothing could be done, thus making a diagnosis futile (33%).
- 75% of clinicians ranked the increasing number of people seeking a diagnosis as a major challenge in the future, followed by people seeking diagnosis due to self-testing (with the proliferation of online and at home tests), and an increase in disease-modifying treatments.
- 83% of clinicians maintain that the COVID-19 pandemic delayed access of people with cognitive decline for assessment.
Personal testimonies from people with dementia and carers included in the report consistently indicate the lengthy time taken before being given a diagnosis, as well as a lack of information at the point of diagnosis about specific types of dementia, progression and available support.
The report authors put forward 18 recommendations, including some key ones here:
- Healthcare systems globally should introduce annual brain health check-ups for the over 50s.
- Governments globally must urgently start to measure and record diagnosis more accurately.
- Improved dementia training and education, plus increased time allocation for diagnosis in primary healthcare.
- Healthcare systems must invest in, and improve, diagnostic capabilities, moving towards precision diagnosis, to eradicate high levels of misdiagnosis.
- Clinicians must become aware and better informed about information, support and planning available via national Alzheimer and dementia associations, and the vital role they play in pre- and post-diagnosis support.
The report’s authors (from left) Professors Pedro Rosa-Neto, Serge Gauthier and José A Morais, and Claire Webster
Lead author Professor Serge Gauthier said, “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.”
ADI CEO Paola Barbarino
Paola Barbarino, ADI CEO, said that lack of awareness and stigma within healthcare systems was 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,” Ms Barbarino said.
The World Alzheimer Report 2021
The report (see main article) was prepared by Professors Serge Gauthier, Pedro Rosa-Neto and José A Morais, and Claire Webster, all from McGill University in Canada, and like previous years involved essay contributions from 51 experts from around the world, including Australia’s Scientia Professor Perminder Sachdev AM from the Centre for Healthy Brain Ageing (CHeBA) at UNSW.
The expert essays from clinicians and practitioners are presented in five sections: clinical assessment, laboratory tests, formulation of diagnosis, particular circumstances and the future of dementia diagnosis.
While no systematic literature search was performed for the report, its findings are based on a major global survey, as well as expert essays and case studies. The survey received over 3500 responses: 1111 multidisciplinary clinicians in 108 countries (62% from high-income countries, 38% from low- and middle-income countries), 205 people with dementia and 2122 carers in 83 countries, and 101 ADI member associations.