Every September, people come together from all around the world to raise awareness and to challenge the stigma that persists around dementia, led by Alzheimer’s Disease International (ADI), the federation of over 100 Alzheimer’s and dementia associations from around the world. Since its inception, World Alzheimer’s Month has grown dramatically, and September 2021 marks the 10th year of this vital global awareness raising campaign.

Over the past seven years, the number of countries participating in World Alzheimer’s Month has increased by 50%, and over the past three years, we’ve seen a 2500% increase in engagement on social media. This exponential growth demonstrates the urgency and the determination of this community of advocates, researchers, scientists, health care professionals, the public, those living with dementia and their carers to challenge the stigma which surrounds dementia and improve the provision of care and support for others.

The movement gained even more significance in 2017 following the universal adoption of the World Health Organisation’s (WHO) global action plan on the public health response to dementia by all Member States. Action area two of the plan (Dementia awareness and friendliness), stipulates that all Member States should be participating in at least one functioning public awareness campaign on dementia to foster a dementia-inclusive society by 2025. We are now over the half-way stage of the plan and it is more important than ever to hold governments to account who are failing to comply with this commitment.

Timing could not be more poignant with new WHO estimates of 55 million people living with dementia, rising to 78 million by 2030, and with dementia now being the 7th leading cause of death globally, and the 1st in some countries.

The importance of a timely diagnosis

The theme for this year’s World Alzheimer’s Month is ‘Know Alzheimer’s, Know Dementia’ and it is all about the power of knowledge. In this spirit, we are shining a light on the potential warning signs of dementia and the importance of a timely diagnosis. In seeking out information, advice and support, and potentially a diagnosis, people are better able to prepare, to plan and to adapt.

While encouraging concerned individuals to seek a diagnosis, we are also cognisant that receiving a diagnosis of dementia is often a challenging and difficult process and varies greatly around the world. To add to this, the stigma surrounding dementia means that many avoid seeking a diagnosis until the very late stages of the condition. Over the past few weeks, dementia and Alzheimer’s associations from all over the world have been holding memory walks, information sessions, media appearances and fundraising events, as well as engaging on social media with the hashtags, #KnowDementia, #KnowAlzheimers to change just this.

‘Journey through the diagnosis of dementia’

Every year on World Alzheimer’s Day on the 21st of September, Alzheimer's Disease International release their annual report. Similar to the World Alzheimer’s Month theme, the 2021 World Alzheimer Report will focus on the crucial and timely subject of diagnosis. The report includes over 50 essays from leading experts around the world and is supported by findings from three key global surveys, including: 1,111 clinicians, 2,325 people with dementia and carers, and over 100 national Alzheimer’s and dementia associations. Importantly, the report also contains the personal experience of the diagnosis process from those living with dementia and carers.

The report has found, what many of us already suspected, that more needs to be done to improve the diagnosis pathway. Shockingly, ADI estimates that 75% of cases globally go undiagnosed, a figure reaching as high as 90% in some low- and middle-income countries. To make matters worse, 90% of clinicians responding to our survey stated that the COVID-19 pandemic has led to additional delays. Emerging research is also linking long-COVID to an increased or accelerated risk of dementia, and when combined with global ageing populations, and diagnostic and treatment breakthroughs, it is evident that healthcare systems around the world are not prepared, a fact underlined by the lack of progress by governments towards the goals of the Global action plan on dementia.

Further findings and recommendations from the report will be available after the launch on the 21st of September at www.alzint.org/worldreport . We invite you to read the report and use its key findings and recommendations, in any way you see fit to support your own advocacy work. All WHO Member States unanimously adopted the global action plan on dementia and therefore governments should be actively trying to achieve the targets set out in the plan by 2025.

About the author

Lewis Arthurton is the Communications and Policy Manager at Alzheimers Disease International (ADI). Prior to joining ADI, Lewis was employed as an analyst, working within a global consultancy company specializing in market access, reimbursement and pricing for novel pharmaceuticals. He also participated in campaigns highlighting the link between antivaxxer conspiracy theories and antisemitism during the Covid-19 pandemic. He holds a DPhil. in Molecular Cell Biology in Health and Disease from the University in Oxford and has experience of front-line care, having worked as a Health Care Assistant within the NHS and as an Ebola Lab Technician in Sierra Leone.