Dementia diagnosis: World Alzheimer Report 2021

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.

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.”

Paola Barbarino

Alzheimer’s Disease International CEO

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.