It’s not too late to act, but time is running out

Author details

Paola Barbarino is CEO of Alzheimer’s Disease International.

 

 

 

Most governments worldwide are poorly prepared for the impending dementia care crisis and time is running out.  But Paola Barbarino argues that it is not too late to act on the expected tsunami of demand. 

 

 Every year on 21 September – World Alzheimer’s Day – Alzheimer’s Disease International (ADI) launches the World Alzheimer Report, a comprehensive source of global socioeconomic information on an aspect of dementia that is pertinent to the lives of those living with dementia and their carers.  

Each annual report focuses on a different topic and the latest is entitled Journey through the diagnosis of dementia and aims to explore diagnosis through the lens of those living with dementia, carers, clinicians, researchers, academics and Alzheimer and dementia associations.  

The report records and amplifies the voices of those most involved in the diagnosis pathway by surveying 2,325 people living with dementia and carers, 1,111 clinicians and over 100 national Alzheimer and dementia associations. To contexualise this data, the report also contains over 50 expert essays from 113 health care practitioners and researchers from around the world.  

There is clear evidence that, across the world, the diagnosis process is inadequate and does not address the needs of those living with dementia and their carers. For us at Alzheimer’s Disease International (ADI), this is a major concern and we urge every country to take action.  

Data from our latest World Alzheimer Report (ADI 2021) suggests that globally, 75% of those living with dementia are undiagnosed, equating to 41 million people.  

These figures make it unlikely that the targets of the World Health Organisation’s (WHO) Global Action Plan on the public health response to dementia – including that half of member states will diagnose 50% of the estimated number of people living with dementia by 2025 – will be met. Worse still, nine out of 10 clinicians who responded to our survey believed there have been additional wait times and delays in the diagnosis process due to Covid-19. Accordingly, only around one in three of those living with dementia said they had access to a clinician during the pandemic.  

Spotting the warning signs of dementia and acting on them to achieve a timely diagnosis is an important aspect of dementia care. The sooner a diagnosis is achieved, the sooner planning and support can be initiated. Major disruption to the dementia diagnosis pathway because of Covid-19 has delayed or prevented access to care and support. 

Delaying diagnosis reduces care and treatment options, especially in the mid to late stages. On this point, one may ask why there is such a reluctance to seek a diagnosis? While there are numerous reasons why this may occur, our experience suggests that stigma, the difficulties in receiving a diagnosis and the perceived lack of treatment options appear to be the main issues. As awareness increases and stigma recedes these barriers are starting to dissolve.  

Stigma and stereotypes 

Stigma and negative stereotypes associated with Alzheimer’s and dementia prevent many individuals from seeking a timely diagnosis and the associated care and support that can be provided. To a large extent this stigma has been shown to originate from the public and in some instances from people living with dementia themselves.  

Regional and cultural differences are also a factor. In rural China, for example, values of hardiness and independence can delay diagnosis by up to two years. In parts of Africa, symptoms of dementia may be perceived as a supernatural phenomenon. In the Arabic speaking world, there are efforts to change the use of the word kharaf, which means “the one who has lost his mind”.  

Our 2019 World Alzheimer Report on attitudes to dementia found that that many health care practitioners had stigmatising opinions themselves. It revealed that 62% of health care practitioners considered dementia to be a normal aspect of ageing, a view shared by 25% of the public.  

But the tide is slowly starting to turn thanks to a monumental effort to change these perceptions by, among others, Alzheimer’s and dementia associations, people with dementia and carers all over the world. 

Timely diagnosis 

The false perception that there is little that can be done about dementia has in part originated from the difficulties with diagnosis. Until recently, the only clinical method to confirm a speculative diagnosis of Alzheimer’s disease or dementia was post-mortem. But new and emerging brain imaging techniques such as computerised tomography (CT) or positron emission tomography (PET) have increased diagnostic accuracy, albeit with a significant margin of error.  

Despite these advances, seeking a diagnosis using these modalities is still a challenging experience for most individuals. These techniques require incredibly expensive and specialised scanners which are not routinely available, particularly for low and middle-income countries, but to a lesser extent in higher income countries too. Utilising these scanners also requires specialist health care practitioners or technicians, who are often not available or in limited supply.  

Diagnostic methods using biomarkers are being developed that may transform diagnostic pathways for dementia. Simply, biomarkers are measurable bodily characteristics that enable clinicians or researchers to determine if a biological process is likely to be happening or – in some cases – has happened.  

Imaging markers such as those used in PET and single photon emission computed tomography (SPECT) scanning are available to determine the presence of tau or amyloid pathologies in the brain.  New biomarkers, however, may soon be available which use blood or cerebrospinal fluid (CSF) samples. Collectively, analysis of CSF or blood biomarkers may revolutionise the diagnosis of dementia owing to their efficacy, affordability and accessibility.  

Such advances will need to be accompanied by greater awareness of the advantages of seeking a timely diagnosis.  Our 2021 report shows that many still wrongly consider diagnosing dementia to be unproductive without the existence of a cure or disease-modifying therapy. Yet, seeking a timely diagnosis for dementia is still incredibly important, allowing greater access to advice and support and ultimately, enabling individuals more time to prepare, to plan and to adapt, ensuring they can remain independent for as long as possible.  

Treatment breakthroughs 

Development of new treatments for Alzheimer’s and dementia has been far too slow. In the past 20 years, out of over 100 pharmaceuticals which have been tested, only a few have been authorised for use. Until recently, pharmaceutical inventions for Alzheimer’s disease or dementia have focused on the symptomatic management of the condition, seeking to alleviate symptoms such as memory loss or confusion, rather than addressing the underlying pathologies of Alzheimer’s disease and dementia.  

Notably, 2021 was the year the first new Alzheimer’s treatment reported to address the underlying disease rather than the symptoms was approved by the US Food and Drug Administration.  Notwithstanding the considerable number of hurdles that will need to be overcome, this conditional approval has brought with it further investment in research and a reinvigorated drive for new disease-modifying compounds. The potential availability of treatments which can extend people’s lifespan or independence is likely to encourage more concerned individuals  to seek a timely diagnosis.  

Tsunami of demand 

Currently 55 million people around the world are thought to be living with dementia, a number set to increase to 78 million by 2030 and 139 million by 2050, in part as a consequence of globally ageing populations. Bearing in mind that (as I have said) three-quarters of those living with dementia are undiagnosed – and that a diagnosis will be a condition of treatment – these drug breakthroughs will put even more pressure on the diagnostic pathway.  

Additionally, we have recently started to consider the consequences of Covid-19 for  the brain and there are reports which have suggested that it has led to faster cognitive deterioration and the acceleration of Alzheimer’s symptoms in some individuals. All of these factors lead us to believe that there will soon be a tsunami of demand, overwhelming healthcare systems around the world, most of which are currently unprepared.   

Avoiding a crisis 

While time is running out for governments to prepare their health care systems for this tsunami of demand, there is still time to act. In 2017, when the WHO released its Global Action Plan, universally adopted by all member states, it covered seven action areas ranging from risk reduction; dementia diagnosis, treatment, care and support; through to support for dementia carers and research. The intention was that these action areas and their associated targets should be implemented as part of each member’s national dementia plan.   

Sadly, despite the adoption of this resolution, uptake has been far too slow, leaving most governments unready to face this global health crisis. Without national plans, we fear that dementia will be forgotten until it is no longer possible to ignore it, a time when it will unfortunately be too late to act. 

As a federation of 105 Alzheimer’s and dementia associations, ADI calls on governments to implement dedicated and funded national dementia plans.  These should be created by expert, multidisciplinary teams, including people living with dementia and their carers.  

The wellbeing and quality of life of people living with dementia and their families is – and will remain – our uttermost priority.   

References 

ADI (2015) World Alzheimer Report 2015: The Global Impact of Dementia. London: ADI. 

ADI (2019) World Alzheimer Report 2019: Attitudes to dementia. London: ADI. 

ADI (2021) World Alzheimer Report 2021: Journey through the diagnosis of dementia. London: ADI.