Global action against dementia: Emerging of a new era

Dajue Wang

The National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury HP199QD, UK

Global action against dementia: Emerging of a new era

The National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury HP199QD, UK

ARTICLE INFO

Received: 20 July 2016

Revised: 15 July 2016

Accepted: 10 August 2016

© The authors 2016. This article is published with open access at www.TNCjournal.com

dementia;

World Health Organization;

a priority;

new technologies;

the entire society

Since ancient times medical profession has typically dealt with physical disorders, because they are visible, palpable, and audible. The diagnosis is relatively direct. Mental health problems are hidden in the brain and we did not know what was going on inside the skull. We could only infer, by observing the patient’s behaviors and making assumptions. Even now, we have to largely rely on this indirect approach. That is why psychology and psychiatry are classified as behavioral sciences. They are abstract, and we do not understand the structural changes causing the problem, except for obvious vascular or neoplastic lesions. Now, due to the introduction of new technologies, many mental health problems can be visualized through hi-tech equipment, albeit they are not yet palpable or audible. This direct approach has made the diagnosis much more secure. Now, we know that the problem of dementia starts from the hippocampal formation, and we can see it on magnetic resonance imaging (MRI) and functional MRI (fMRI). Therefore, a new era of mental health care is emerging. Dementia has become a burden for the patient, family members, caregivers, and the entire society. With ageing population, the number of patients with dementia will increase sharply not only in the developed but also in the developing world. The care of patients with dementia involves not only biology, but also sociology, including politics, and humanities. In 2012, in collaboration with the UK-based Alzheimer’s Disease International, the World Health Organization (WHO) published “Dementia: a public health priority”report. A year later, in 2013, the problem was raised at the G8 summit meeting in London. In 2014, the UK-based Alzheimer’s Society estimated that by 2015, there would be 850,000 sufferers of dementia. Finally, in 2015, the First WHO Ministerial Conference on Global Action Against Dementia took place in Geneva and a document calling for action was published. Every UN member state has a responsibility to take action in response to this solemn call to save the human race.

1 Introduction

Since ancient times medical profession has dealt with physical disorders, because they are visible, palpable, and audible. The diagnosis is relatively direct. Mental problems are hidden inside the brain. We do not know what is going on inside the solid skull. We can only guess through indirect approaches. We observe the patient’s behaviors and assume what is going on inside their head. That is why psychology and psychiatry are classified as behavioral sciences. They are abstract, and we do not know the structural changes causing the problem, except for the obvious vascular and neoplastic lesions. Now, due to the explosion of new technologies, many mental health problems can be visualized through hi-tech equipment, albeit they arenot yet palpable or audible. This direct approach has made the diagnosis much more secure. Now, we know that the problem of dementia starts from the hippocampal formation, and we can see that on magnetic resonance imaging (MRI) and functional MRI (fMRI).

Because of its unique nature, dementia is not an ordinary topic. It is not just about biology. It is also about sociology, including politics, and humanities. It involves not only a sector of the population, but its entirety. It includes anything and everything that the patients need. Nowadays, we quite often hear the word “dementia”. We know that it means something being wrong with the brain and the behaviors of the victim; we may not know exactly, what it means to the family and the society. We will come to the scientific nature of the word and its implications later. First, let me present two real-life incidents, to see what you think and will do about them. Both of them involve the same family. Character A was a woman with dementia, while B her husband.

Incident One: It is a brilliant summer day. A and B are having an afternoon tea in a pleasant tea room on a beautiful hill with trees and flowers. Children are laughing. Dogs are barking. A is slow to eat and drink properly. Repeated, patient persuasions are needed. This slightly spoils the surrounding tranquility. B apologizes to the relatively old, middle-aged couple at the neighboring table for the disturbance they have created. The woman at the table is angry and says,“You should not take her out to a public place.” B explains politely: “I was advised by experts that she should communicate more often with the public.”This has silenced the woman, but a few minutes later the couple has left with displeasure, if not anger.

Question: Who is right: B or the woman at the neighboring table?

Incident Two: It is lunch time. A and B are at a small snack bar to have a light snack. Despite repeated persuasions for three quarters of an hour, a simple dish remains unfinished on the table. It is time to go home. When they go to the car park, A does not want to get into the car and walks away. She is dragged back and pushed into the car by B. She screams. At least five passers-by rush to the scene thinking someone is being kidnapped. When B explains the situation to them, a gentleman leaves instantly, understanding that it is a family and health issue and not a crime. All other passers-by are women. One of them says that A should not be left out on the street; instead, she should be sent to a nursing home. All the women do not seem happy, but A is already in the car and B drives away. Quarter of an hour after they reach their home, two policemen come by and explain to B that one of the passers-by has reported a suspected crime to them. They want to see if A is all right. A has forgotten any unpleasantry and meets them with a broad smile. The police are satisfied and leave.

Question: What has been done right and wrong, and by whom?

The answers to this questions may not be black and white. The annual reports of Alzheimer Europe 2010–2015 repeatedly stress the ethical dilemma between the right and wrong, in terms of how to deal with the patients. An answer has yet to be worked out. This article will not give an answer, but it will open the door for people to stand up to the challenge.

Nowadays, we also hear the term “Alzheimer’s Disease (AD)” frequently. However, ordinary people rarely hear the word “cognition” and its derivative“cognitive impairment”, because they belong very much to the scientific terminology, particularly to psychology and psychiatry. Although we use the word“dementia” herein, in line with the World Health Organization (WHO), it is essential that we understand the core of the issue: cognition, impairment of which causes dementia and Alzheimer’s Disease.

What is cognition? Two dictionaries give slightly different definitions:

– The Oxford Advanced Learner’s Dictionary (OALD):“The mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.”

– The Merriam-Webster Dictionary: “Conscious mental activities: the activities of thinking, understanding, learning, and remembering.”

The second definition seems to be simpler and easier to memorize. The more you consult other dictionaries, the more differences you will find. As there is no unified definition yet, the author would like to use common sense to propose the simplest definition ever: Memory, Mind, and Mood (3Ms) in alphabetical order. It is more suitable for popular than serious science. Memory comes first because of its utmost importancein all mental processes and it is the first step in receiving all sensory signals. In the OALD, the wordmindhas in fact a very overarching definition, but the memory is not specifically mentioned. As tomood,all its definitions, except that provided on one website, are irrelevant to cognition[1]. As many psychological studies are based on computer models, it can be argued that machines do not have feelings, and hence mood is mistakenly considered irrelevant to cognition[2]. However, probably the best written monograph, by Brodal, on human central nervous system, beyond doubt associates mood with cognition[3]. Clinical experience also suggests that mood is inseparable from cognition. Therefore, it is desirable that it be added to the definition of cognition in popular scientific writing.

Cognition is generated by the higher mental power (Darwin) or higher nervous activity (Pavlov) of the brain[4,5]. It exists not only in humans, but also in other animals[5–7]. However, herein we discuss only human cognition. Naturally, its disorders have existed since the birth of mankind. It poses a challenge to medical professionals who are used to dealing with visible physical disorders, because the mechanism behind cognition is, on the contrary, abstract. As a result, studying and dealing with cognition are in the realm of psychology and psychiatry, while general medical professionals are rarely involved. The public and the policymakers are also less concerned about cognitive disorders, considering them not immediately life-threatening, and wrongly assuming that they affect only a limited population. However, whether they like it or not, this line of thinking is about to be, or has already changed although this fact may remain unnoticed by many.

In fact, the understanding of cognition has changed soon after the World War II (WWII). The first signs of serious cognitive disorders were systematically reported by the military in the process of regional wars. On the other hand, human beings are not just harmed by wars, but by peace as well. A syndrome of cognitive disorder of peace time, caused by various pathologies, and known as dementia began to affect the human brain. Like an epidemic, it affects more and more of the population, and has become a major hazard to human health and the society as a whole.A new erafor cognitive disorders and neurorehabilitationis emerging. Due to the special nature of the problem, affecting almost every member of the society, no one should be exempt from being involved.Policymakers,Public,Professionals,Philanthropists, andPatients, the5Ps,should wake up and work together to protect human health on global scale. To cover all aspects of the current global state of dementia, we would at least need a book of more than a thousand pages. Obviously, we are not embarking on this impossible mission at the moment. This review is written in a less serious manner and is of a relatively small size, so that non-professionals can also find time to read it and are able to understand its content.

2 Taxonomy based on pathology

In medical literature, the terms “Alzheimer’s Disease”and “Dementia” are quite often used interchangeably. This may lead to confusion for people who are not familiar with the terminology. Alzheimer’s Disease is named after the German psychiatrist who first reported a case of dementia. It was later defined as a mental disorder ofcognition impairmentpurely associated with degenerative changes of the ageing brain without other pathologies. Dementia can also be caused by vascular disease damaging the brain. It is known as the cerebrovascular dementia, or simply vascular dementia. Degenerative and vascular dementias are sometimes coexistent. In these cases, differentiation between them can only depend upon which prevails. All other types of cognitive impairment are described under the common term, as a syndrome of dementia, depending upon their etiologies (Table 1). Dementia is the officially-used term[8]. Its incidence and prevalence depend on the cultural conditions of the country and the region.

Table 1Classification of dementia

3 War and peace, not Tolstoy’s

3.1 Impact of wars on cognition

Regional wars of unprecedented intensity rumbled on after WWII; the country that led those wars was the United States. The wars had two effects on the psyche of the soldiers, whose experiences were comprehensively recorded in the US in the official textbook on military medicine[9].

3.1.1The horrors of war prompt a syndrome known as thePosttraumatic Stress Disorder (PTSD)The diagnosis first appeared in the official nomenclature under the name Gross Stress Reaction, when Diagnostic and Statistical Manual of Mental Disorders (DSM)-I was published in 1952[10]. It was in 1980, after a lengthy legal wrangling, when PTSD was defined as a stress disorder in the DSM-III[11]. It is characterized by anxiety, and is a final common pathway, occurring as a consequence of many different types of stressors, including both combat and civilian stress. However, no civilian experiences are comparable to the horrors of war, and most people still see it as amilitary issue. For this reason, it will not be thoroughly discussed in this review.

3.1.2It is not all blinding flashes and deafening explosions during wars. There may be complete silence in isolation, in an ambush, or in the cockpit of a military vehicle like tank, submarine, or jet fighter[12,13]. The official US military textbookWar Psychiatrycomprehensively reviewed the mental traumas of wars[9]. In its Chapter 13 entitledBehavioral Consequences of Traumatic Brain Injurypublished in 1995, environmental factors, such as loneliness and boredom, and symptoms of dementia, such as loss of memory and disorientation, and many others, were described in detail, but no diagnosis was provided. However, many years before its publication, Rosenzweig (1962) and Diamond (1964) had proven in rat experiments that loneliness and boredom associated with isolation might cause dementia, while active socializing prevents it[12,13]. It seems that within military ranks, these types of psychological problems are not considered to be specific enough to the main phenomenon of wars—traumatic experience— and consequently less attention is paid to them. As a result,dementiaremains, by and large, acivilian issue.

3.2 Impact of peace on cognition

During the past 70 years, since the end of WWII, people in developed countries have lived on their own territories in peace. Economy developed rapidly, and people became better and better off, almost without limit. The population has moved out from busy downtowns to quiet, suburban areas to enjoy tranquility. People live longer and longer. Life could not be better! Against all expectations, instead of a healthy life, a fearsome enemy of mankind—dementia—is creeping in quietly. Some victims lose their memories. They become disorientated and get lost on the streets. The disease is progressing slowly, but steadily. At the end of the day, some may not even recognize their most intimate relations and friends. The final outcome could be much worse.

When the problem became global and serious, WHO, governments, professional societies, and big financial institutions began to intervene. The World Bank 2009 report indicates that longevity (ageing) is associated with increase in income. This affluence has contributed to the development of dementia. Hence, for a long period of time, dementia has been seen as a disorder associated with high income. However, new research, presented at the Alzheimer’s Association International Conference (AAIC) in Copenhagen in 2014, has suggested that age-specific incidence rates of dementia may be in decline in higher income countries[14].

4 Declaration of war against dementia

“Declaration of War” are strong words. They may sound exaggerated to people, who do not fully understand the gravity of the problem. Many people remain apathetic about dementia despite repeated calls for attention by 5Ps around the world. Then, the WHO got involved, in conjunction with governments and relevant organizations. Since the second decade of the century, a series of events have taken place and some important publications have appeared. They have portrayed a serious and widespread, current situation of dementia around the world, showing that global action is not only justified, but also necessary.

2011– To raise the awareness, theRoyal Society of Medicine(RSM) organized a forum in London, under the auspices of theWHOand with the presence of its senior official. It was entitled“Denial”. This is shocking and unprecedented for the United Kingdom, a country well-known for its gentle etiquette, to use such a strong word to criticize the wrong attitude of ignoring the problem. That such a strong word was used as the theme of the meeting is exceptional. This was like an instant wake-up call, right at the very entrance to the hall.

2012– Defining “Dementia: a public health priority” by WHO in collaboration with the UK-based Alzheimer’s Disease International[15].

2013– When theG8 Summit Meetingtook place in London, the UK Department of Health, the Organisation for Economic Co-operation and Development (OECD), and health ministers of other countries discussed the issue and published a declaration, signed by all G8 health ministers, to tackle the problem with global joint efforts. In the same year, TheBritish Medical Research Councilpublished the results of its survey in England and Wales[16].

2014 – The UK-based Alzheimer’s Societypublished its report, showing an example in the developed world of the situation of the victims of the disease and those who look after them[17]. It estimated that by 2015, there would be 850,000 sufferers of dementia. The cost would be a staggering sum of £26 billion a year. In the same year, theAlzheimer Europeandthe US Alzheimer’s Associationpublished their reports on the prevalence of dementia in Europe and the US respectively[18,19]. Finally, a comprehensive review fromBrazilprovided a global picture of the disorder[20].

2015– To further speed up the progress, theFirst WHO Ministerial Conference on Global Action Against Dementiawas held in Geneva[8]. The participants included 80 member states, 80 philanthropic foundations, 45 non-governmental organizations (NGOs), and 4 United Nations (UN) Agencies. This has brought the awareness and call for action to an unprecedentedly high level and global scale. This wasa landmark conferencethat every member state has to be familiar with.2016– A meeting was organized at theRSM,in partnership with theAlzheimer’s Society, where only 30% of participants were medical professionals while the remaining 70% were administrators, social workers, family members, caregivers, and any willing-to-help enthusiasts. This was a real collective effort of the entire society, entitled:“Medicine and Me: Living well with dementia”. All the spot lights were focused on one individual: the patient.

4.1 The Manifesto

If the 2011 Forum of Denial hosted by the RSM under the auspices of WHO was aDeclarationof action against dementia, the First WHO Ministerial Conference on Global Action Against Dementia held in Geneva in March 2015 could be seen as aManifestofor global tangible actions. A report entitled the “First WHO Ministerial Conference on Global Action Against Dementia” was published (http://www.who.int/mental_ health/neurology/dementia/ministerial_conference_ 2015_report/en/) and a summary, in the form of News Release by WHO Media Centre, was also made available (http://www.who.int/mediacentre/news/releases/2015 /action-on-dementia/en/). The points below provide a summary and discussion of the documents.

4.1.1The UK Government announced at the Conference that it will invest US$100 million into pioneering, new, global Dementia Discovery Fund.

4.1.2Nineteen countries already have a national policy or plan. They are Australia, Belgium, Costa Rica, Cuba, Denmark, Finland, France, Ireland, Israel, Italy, Japan, Luxembourg, Mexico, the Netherlands, Norway, Republic of Korea, Switzerland, United Kingdom, and the USA. None of the BRIC (Brazil,Russia,India, andChina) countries is on the list despite their fast developing economies. One possible reason might be that all of these countries have vast territories and massive populations, and are in their early stages of economic development. Gross Domestic Product (GDP) does not actually reflect real economy, let alone society wellbeing[21]. Even GDP per capita does not reflect real economy because of the extreme polarization of wealth and because the report does not take into account the standard deviation. Except for Mexico, Costa Rica, and Cuba, the BRIC countries are all lower ranking than the other 16 countries, as recorded in theWorld Bank 2014 report. It is hoped that with further development of their economy more will be invested in human wellbeing.

4.2 The participants’ foci of attention at the Conference. After every point, the author added a comment for discussion.

4.2.1 WHO (W):Dementia currently affects more than 47 million people worldwide, with more than 75 million people estimated to be living with dementia by 2030. The number is expected to triple by 2050. It is one of the major health challenges for our generation. Often hidden, misunderstood, and underreported, dementia impacts individuals, families, and communities, and is a growing cause of disability.

Comment (C):Ordinary people live from day-to-day not planning decades ahead. They may pay more attention to the price of goods on the supermarket shelves than the horrifying figures in the distant future. Hence, leadership is key. A national policy and plan is urgently needed. It is a dereliction of duty, if the leadership does not take effective action.

4.2.2 W:Contrary to popular belief, dementia is not a natural or inevitable consequence of ageing. It is a condition that impairs cognitive brain functions of memory, language, perception, and thought, and which interferes significantly with the ability to maintain the activities of daily living. The most common types of dementia are Alzheimer’s disease and vascular dementia. Evidence suggests that the risk of certain types of dementia may be lowered by reducing cardiovascular risk factors.

C:Simple materials on dementia should be freely available at popular sites like supermarkets, department stores, underground stations, etc. Better media coverage is necessary.

4.2.3 W:The personal, social, and economic consequences of dementia are enormous. Dementia leads to increased long-term care costs for governments, communities, families, and individuals, and to productivity loss for economies. The global cost of dementia care in 2010 was estimated to be US$604 billion—1.0% of global GDP. By 2030, the cost of caring for people with dementia worldwide could be an estimated US$1.2 trillion or more, which could undermine social and economic development throughout the world.

C:Only by investing now to stop deterioration of the situation can future unnecessary spending be controlled.

4.2.4 W:Nearly 60% of people with dementia live in low- and middle-income countries, and this proportion is expected to increase rapidly during the next decade, which may contribute to increasing inequalities between countries and populations.

C:Education has to be universal, and not only in the developed countries.

4.2.5 W:A sustained global effort is thus required to promote action on dementia and address the challenges posed by dementia and its impact. No single country, sector, or organization can tackle this alone.

C:This is absolutely true. Work has to start now, not later.

4.2.6W:A list of eight overarching principles and approaches integral to global efforts was laid down. Please refer to the original document.

C:All these principles and approaches can be implemented only, if the governments are actively involved at the highest level, not just in words, but also in deeds.4.2.7 W:Eleven points were raised calling for actions.C:Points 5 and 6 are directly related to science and technologies. Point 5 calls for technological and socialinnovations,while Point 6 forcollaboration. This is where life and social scientists can contribute.

The above-mentioned report produced after the Conference is apoliticalone, calling for action. Ideally, it should be translated into policy and action of most, if not all, member states at national level. Only then the translation into benefits for the patients with dementia will be complete. Such ideal may never be achieved. However, if major member states and institutions can work successfully together, lead the way, and set examples for the others, it would be a great accomplishment. As the scientific data are sparse in the report, as it was meant to be, the world’s scientific community has to work hard to produce their own detailed and in depth materials. Only with better understanding of this extremely complex issuecan the translation work move forward. The next part of this two-part review is aimed precisely at making a small contribution in this direction.

5 The author’s comments as a caregiver

As the caregiver of his late wife, the author would like to make a few general points on care improvement. This is in compliance with the WHO principle of active involvement of the caregiver in the fight against dementia.

When my wife’s symptoms and signs of dementia became obvious and her life difficult, I consulted our closest relatives on what to do. Everybody’s answer was to send her to a nursing home; otherwise, my life would be unbearable. I declined and kept looking after her by myself for 5 years. Life would have been very difficult emotionally for her without me at her side. I had to give up much of my academic work. My health declined.

When I was in deep grief soon after my wife passed away, I met with two medical doctors, at two different occasions. Both of them said the same thing to me:“You must be relieved now!” I did not feel like that at all. I felt a great loss and emptiness that I did not know how to fill.

Everyone describes dementia as a burden. It sounds very negative, although it is absolutely true. Could it be desirable that responsibility be a more positive word?

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Wang DJ. Global action against dementia: Emerging of a new era. Transl. Neurosci. Clin. 2016, 2(3): 203–209.

* Corresponding author: Dajue Wang, E-mail: dajue.wang@btopenworld.com