Lewis Arthurton, Policy and Communications Manager for Alzheimer’s Disease International, examines how different strategies can be developed to improve the diagnostic processes for Alzheimer’s and dementia.
Dementia is the general term for different brain disorders that affect memory, language, thinking, and emotion. There are several causes of dementia, but Alzheimer’s disease is the most common. Currently, there is no cure for dementia, but there are a variety of ways that people with dementia, or their carers, can access support for the management of the condition.
Someone that advocates for the improved management and treatment of Alzheimer’s and dementia is Lewis Arthurton, Policy and Communications manager for Alzheimer’s Disease International. Here, he tells Health Europa about how policy needs to evolve to better address dementia-related issues.
How did Alzheimer’s Disease International (ADI) come to be founded? What are your key aims?
Alzheimer’s Disease International started out as the international umbrella organisation of four Alzheimer’s associations. It aimed to give a global voice to the Alzheimer’s and dementia community at a multilateral level. At that time, nobody advocated globally for dementia and indeed, nobody knew what the prevalence and incidence figures were. We published the first figures on global prevalence and incidence and set out to raise awareness globally about the disease. We now have 105 member organisations (and therefore 105 countries as we can only have one member per county) and 20 in development.
The key to improving the outcomes around dementia lies in a combination of global solutions, and local knowledge. We work with national Alzheimer’s and dementia associations to advocate and raise awareness, and to offer care and support for people living with dementia and their care partners. Globally, we work to focus the attention on dementia as a health and research priority, and campaign for better policy from governments, the World Health Organization (WHO), and other multilateral bodies.
Dementia knows no social, economic, ethnic, or geographic boundaries. Although each person will experience dementia in their own way, most of those affected will eventually be unable to care for themselves, will lose their memories, and will need help with all aspects of daily life.
There is no cure for dementia yet. It is the seventh leading cause of death worldwide, one of the major non-communicable diseases (NCDs) worldwide, the largest cause of disability among older people, and has a huge economic impact on families and on society.
Our key objectives as outlined in our strategic plan are:
- Make dementia a global health priority: ADI will lead global advocacy efforts and support the national advocacy of member associations to make dementia a public health priority;
- Reduce stigma: ADI will seek to reduce stigma by increasing understanding of dementia, researching the issue, recognising cultural differences, and acting to protect the rights of people living with dementia;
- Strengthen membership: ADI will meet the varying needs of Alzheimer’s and dementia associations and provide programmes that will enable members to best support people affected by dementia and their care partners;
- Facilitate research: ADI will facilitate and encourage research and innovation, including in care, prevention, healthcare systems, epidemiology, public health, and effective treatments; and
- Enable ADI to achieve its objectives: ADI will develop funding plans to enable our objectives to be achieved and will use technology and modern communications to execute this Strategic Plan.
How common is Alzheimer’s disease? Are there any significant risk factors or particularly vulnerable demographics?
Dementia is the collective name for progressive degenerative brain syndromes which affect memory, thinking, behaviour, and emotion. Alzheimer’s disease is the most common type of dementia, contributing 60-80% of cases.
The causes of dementia are still being actively researched and we call on the WHO, governments, and research institutions to commit and prioritise research into understanding the causes of dementia and implement strategies to mitigate them, through developing policy and risk reduction strategies for their populations.
Our 2018 World Alzheimer Report looked at state of the art dementia research, showing how far dementia research is behind other disease areas research, from basic science, through treatment development to care research. ADI strongly calls on governments globally to increase funding into dementia research, to a minimum 1% of the societal cost.
There are a number of risk factors which have already been identified and may contribute to the development of dementia. The greatest risk factor for Alzheimer’s disease and other dementias is increasing age. Although age increases risk, dementia is not a normal part of ageing.
We know there are more than 20 genes which affect a person’s risk of developing dementia. The gene APOE was the first known to increase a person’s risk of developing Alzheimer’s disease, and it is still the strongest risk gene known. There are also genes which directly cause dementia, but these deterministic genes are rare. They are estimated to account for less than 1% of dementia cases and cause young-onset forms in which symptoms usually develop before the age of 60.
There are changes that we can make to reduce our risk of dementia, either lifestyle changes as individuals or wider changes across society. Other changes are still being discovered. For example, at the recent Alzheimer’s Association International Conference (AAIC) improving air quality was shown by a number of studies to reduce the risk
Recent data found that more women died from dementia than COVID-19 in England and Wales over the last year. Each day, 125 women sadly die of dementia, being the leading cause of death for women in England and Wales in 2020.2
What preventive or protective measures can people take to lessen their risk of developing Alzheimer’s disease and other dementias?
Although we cannot change our genes or stop ageing, there are changes that we can make to reduce our risk of dementia, either lifestyle changes as individuals or wider changes across society. A growing body of research evidence exists for 12 potentially modifiable risk factors.
Despite behaviour change being difficult, and some associations might not be causal, individuals have a huge potential to reduce their dementia risk. Many of the risk factors are also shared with other NCDs such as heart disease, cancer, diabetes, and chronic respiratory diseases.
Staying active, eating well, and engaging in social activities all promote good brain health, and may reduce your risk of developing dementia. Keeping your heart healthy, by avoiding smoking and excessive alcohol consumption, for example, can lower your risk of dementia and other diseases too.
The following link lists common risk factors and how, in some instances, they can be counteracted:
What are the key challenges currently facing the management and treatment of Alzheimer’s disease? Why did you choose to focus the World Alzheimer Report 2021 on the subject of diagnosis in particular?
Our theme for this year’s World Alzheimer’s Month campaign is ‘Know Dementia’ and ‘Know Alzheimer’s’ and we are encouraging people to spot the ‘warning signs of dementia,’ highlighting 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. Receiving a diagnosis of dementia is often a challenging and difficult process. To add to this, the stigma surrounding dementia means that many avoid seeking a diagnosis until the very late stages of the condition.
One of the targets of action area four of WHO’s global action plan on the public health response to dementia, stipulates that 50% of Member States should be diagnosing 50% of the expected number of people living with dementia. Data from our World Alzheimer Report 2021 ‘Journey through the diagnosis of dementia’ has shown that up to 75% of people (or 41 million people) are undiagnosed and as high as 90% in some low- and middle-income countries.
To add to this, there are new potential treatments for Alzheimer’s disease on the horizon that will require a formal diagnosis of dementia. Without this, people will not be able to access them, and given the numbers above, it is easy to see why this will be a problem in the immediate future.
It is for all these reasons that we decided to focus our World Alzheimer Report 2021 on diagnosis. The aim was to obtain a global perspective on current dementia diagnosis practices, barriers and facilitators, emerging and imminent future impact of diagnostic breakthroughs, and provide a robust set of recommendations to governments on how to improve the diagnosis journey across the world.
How could healthcare policy and practice evolve to better support dementia care?
ADI continues to advocate at a global, regional, and local level for the implementation of national dementia plans. We fervently believe that a funded plan following and reporting on all seven action areas of the WHO global action plan on the public health response to dementia is the best way to address dementia-related issues in each country. Despite all WHO Member States unanimously adopting the plan in 2017, uptake has not been fast enough and to date, only 34 Member States have plans in place. This number falls short of the WHO target of 146 countries (75%).
In terms of diagnosis, The World Alzheimer Report 2021 ‘Journey through the diagnosis of dementia’ made the following recommendations for how to improve the process:
- Healthcare systems globally should introduce annual brain health check-ups for the over 50s, facilitated by evolution in biomarkers science, with the opportunity to promote risk reduction strategies;
- Governments globally must urgently start to measure and record diagnoses more accurately. Accurate measurement of diagnosis rates is the key to treatment, care and support, to healthcare system preparedness, and to challenging stigma;
- Governments must prepare for a tsunami of demand for healthcare services as a result of global ageing populations, improved diagnostics, including biomarkers, and emerging pharmacological treatments;
- Better training, education, and time allocation is required in primary healthcare in diagnosis to combat lack of skills and confidence and to remove the counter-productive time pressure on primary care doctors when dealing with a complex and sensitive diagnosis and disclosure;
- Healthcare systems must invest in and improve diagnostic capabilities, moving towards precision diagnosis, to eradicate high levels of misdiagnosis;
- Improved disclosure training required for diagnosing clinicians to communicate transparently and sensitively, providing information on next steps, clinical follow-up, condition evolution, treatment options, and importantly, direction to post-diagnostic
- Governments globally must recognise the right to a timely clinical diagnosis and put in place the capacity to deliver this, to enable better planning, treatment, care and support, in line with action area four of the WHO global action plan on dementia;
- Healthcare systems must make culturally appropriate, translated and validated cognitive assessment tools available to increase diagnosis rates, leading to better information and planning, plus access to treatments, trials, and support;
- Call for a standardised, online, ethical, government adopted cognitive assessment tools, to enable people to take initial and informed steps and to mitigate against dangerous misinformation;
- National awareness raising campaigns must address the stigma surrounding dementia, especially in some low-income countries where up to 90% of cases go undiagnosed, and actively promote awareness of the warning signs in line with action area two of the WHO global action plan on dementia;
- Best practice in assessment must be recognised as a combination of cognitive testing, backed up by scan and/or CSF testing, plus preparedness and readiness to embrace emerging biomarkers;
- Improved access to scanner technology required for confirmatory diagnosis, for access to emerging treatments and ongoing monitoring with equivalent specialist training;
- Long-term clinical follow-up for people living with dementia, as part of a holistic, post-diagnostic support package, to include disease progression and changes in diagnosis. This includes treatment monitoring and evaluation, in an era where new modifying treatments are becoming available;
- As two-thirds of people with Alzheimer’s disease are women, more research must be funded into precision medicine focusing on evidence-based, sex-specific measures for cognitive, clinical, and biomarker testing;
- A call to educate healthcare professionals and the general public about the role of cerebrospinal fluid testing and repositioning this misunderstood diagnostic tool, in line with similar perspectives on epidurals;
- Clinicians must become aware and better informed about information, support, and planning available via national Alzheimer’s and dementia associations and the vital role they play in pre- and post-diagnostic support;
- Further build on the innovative, often technology-based approaches, including telemedicine, which evolved rapidly during the COVID-19 pandemic, and research how these might best supplement, but not replace, future cognitive assessment, while acknowledging the benefits for remote or rural communities or for those unable to travel safely; and
- Governments must prepare now for future pandemics to ensure that the diagnostic and treatment pathways are not disrupted to the levels experienced during COVID-19.
Have any new developments or innovations improved the success rate of Alzheimer’s diagnosis and treatment in recent years?
The introduction of PET scanners has been associated with an improvement in diagnosis rates. Blood biomarker testing for dementia diagnosis is expected to be available in the coming years
which should make diagnosis more accurate than ever before.