{"id":493207,"date":"2023-10-10T20:13:55","date_gmt":"2023-10-10T23:13:55","guid":{"rendered":"https:\/\/revistapesquisa.fapesp.br\/?p=493207"},"modified":"2023-12-11T10:32:23","modified_gmt":"2023-12-11T13:32:23","slug":"at-least-1-76-million-people-in-brazil-suffer-from-dementia","status":"publish","type":"post","link":"https:\/\/revistapesquisa.fapesp.br\/en\/at-least-1-76-million-people-in-brazil-suffer-from-dementia\/","title":{"rendered":"At least 1.76 million people in Brazil suffer from dementia"},"content":{"rendered":"

In early June, psychiatrist and epidemiologist Cleusa Ferri of the Federal University of S\u00e3o Paulo (UNIFESP) was hard at work on an extensive and important report that she will present to Brazil\u2019s Ministry of Health in September. Drafted together with experts in neurology, geriatrics, and mental health, the document contains the most recent estimates, calculated for the entire country for the first time, of a problem expected to hit the health system with full force in the coming decades: the increase in cases of dementia. Specialists hope the report will encourage the government to act and contribute to a national strategy addressing the issue, something that has been recommended by the Pan American Health Organization (PAHO) since 2015.<\/p>\n

Time is of the essence. At least 1.76 million Brazilians over the age of 60 currently suffer from some form of dementia, a group of incurable illnesses that, through various mechanisms, cause the progressive loss of brain cells, ultimately leading to disability and death. Most of these people \u2014 an as yet unknown proportion that could exceed 70%, according to experts \u2014 have not even been diagnosed, which means they do not receive the treatment needed to control the changes in memory, reasoning, mood, and behavior that arise as the disease progresses.<\/p>\n

Ferri and neuropsychologist Laiss Bertola arrived at this estimated percentage after carrying out neuropsychological and day-to-day functional competence tests to measure the number of people with dementia in a group of 5,249 individuals, a representative sample of the Brazilian population aged 60 or over. The researchers extrapolated their estimate (5.8%) to the rest of the Brazilian population of the same age group, based on the most recent national census, from 2010. The number was then adjusted to account for the increase in the number of elderly people in the years since. The results were originally published in the Journal of Gerontology<\/em> on January 22.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

According to the article, the total number of cases in 2019 was about 20% higher than four years prior, when it was estimated that there were 1.48 million people with dementia in Brazil. And this figure is expected to grow, with projections that it will reach 2.78 million by the end of this decade and 5.5 million by 2050. The proportion of individuals with the disease increases significantly with age, although experts and the World Health Organization (WHO) state that it is not a characteristic of normal aging. Brazilian data indicate that 3% of individuals aged between 65 and 69 years develop dementia. This rises to 9% in the 75 to 79 age group, 21% in 85- to 89-year-olds, and 43% after the age of 90.<\/p>\n

“This information is crucial for the country to prepare to address the situation and create the services required to meet the needs of these people,” said Ferri, who in June was still trying to complete her calculations of how long it takes for each new case to arise among Brazilians, on average. \u201cThe document recommends that the Ministry of Health and other agencies monitor the number of cases over time. It also suggests what steps need to be taken to reduce people\u2019s risk of developing dementia,\u201d says the researcher, whose father died 15 years ago with one of the forms of the disease.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

The rising number of dementia cases is not exclusive to Brazil. In much of the world, improvements in living conditions achieved over the last century have allowed people to live longer. In 2005, there were around 670 million people aged 60 or over worldwide, equivalent to 10% of the global population. In 2050, according to projections by the United Nations (UN), there will be almost 2 billion \u2014 equal to 22% of humanity.<\/p>\n

With the world\u2019s population growing and life expectancy increasing, more cases of dementia are expected. In a February 2022 article in the journal The Lancet Public Health<\/em>, an international team of researchers estimated that 57.4 million people worldwide were living with some form of dementia in 2019. This number, according to their calculations, will grow by 2.7 times by the middle of this century, reaching 152.8 million.<\/p>\n

It is a huge problem that will not affect all countries uniformly and will soon need to be tackled. Cases are expected to increase at a greater rate in low- and middle-income countries \u2014 in Latin America they will triple \u2014 which will overload healthcare systems and families alike. Dementia is one of the biggest causes of disability in the elderly and has a physical, psychological, social, and economic impact both on the people with the disease and on those who care for them. According to the WHO, US$1.3 trillion was spent on caring for people with dementia globally in 2019.<\/p>\n

\u201cThere are three factors behind the greater increase in these countries,\u201d says Paulo Caramelli, a neurologist from the Federal University of Minas Gerais (UFMG) and coauthor of a recent study on dementia in Latin America. The first is that the populations of low- and middle-income countries are aging very quickly. It took almost 150 years for the proportion of elderly people to rise from 10% to 20% of the population in France, one of the nations with the oldest populations in the world, while in countries like Brazil, this transition is going to occur in just over two decades. The other two reasons are improvements in diagnosing dementia and poorer management of health problems \u2014 especially diabetes, hypertension, and obesity \u2014 that contribute to the disease\u2019s development. \u201cIn the USA and Europe, where the population has already reached the life expectancy ceiling and the risk factors are better controlled, the prevalence will decrease in the coming decades,\u201d says the researcher, who specializes in dementia.<\/p>\n

\"\"Belisa Bagiani<\/span><\/p>\n

Alienation, foolishness, and senility
\n<\/strong>Possibly as old as humanity itself, dementia \u2014 or some of the symptoms that characterize it \u2014 has been given many names throughout history. Alienation, amentia, stupidity, idiocy, imbecility, foolishness, and senility are just some of the terms listed by neurologists Fran\u00e7ois Boller and Margaret M. Forbes in an article published in the Journal of the Neurological Sciences <\/em>in 1998.<\/p>\n

The derogatory connotation of some of these terms hints at how people with dementia have been treated for a long time. Often considered a nuisance, people who showed signs of delirium and agitation were confined in asylums or prisons before the emergence of psychiatric hospitals. Even in medical institutions, they were frequently kept in chains, deprived of food and clothing, or subjected to beatings, wrote American psychiatrist Tia Powell of the Albert Einstein College of Medicine in New York, USA, whose mother and grandmother both had the disease, in a chapter of the book Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End<\/em> (2020). Things only started to change at the end of the nineteenth century, when some areas of medicine began seeing people with dementia from a more compassionate perspective.<\/p>\n

What doctors call dementia today is a broad set of illnesses that can manifest at any time in life, but most often emerge after the age of 60 and inevitably lead to progressive deterioration of a person\u2019s intellectual capacity.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

The most well-known and common is Alzheimer’s disease. Described in 1906 by German psychiatrist and neuropathologist Alois Alzheimer (1864\u20131915) and almost simultaneously by his Czech counterpart Oskar Fischer (1876\u20131942), the disease represents up to 70% of cases of dementia in high-income countries, and somewhere between 50% and 60% in Brazil, according to studies carried out in the country. The earliest sign, which is usually short-term memory problems, appears more frequently after the age of 65.<\/p>\n

Two other forms of dementia, each accounting for less than 5% of all cases, tend to present earlier: frontotemporal dementia and dementia with Lewy bodies (DLB). The former is named after the fact that the lesions are concentrated in the anterior and lateral areas of the brain \u2014 the frontal and temporal lobes respectively \u2014 and affect the individual\u2019s ability to plan, concentrate, and control impulsive behavior. Symptoms can begin to show from around the age of 45, slightly earlier than dementia with Lewy bodies, which is marked by problems with concentration, logical reasoning, and movement control and results from a type of lesion identified by German neurologist Fritz Henrich Lewy (1885\u20131950) in 1912.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

There is a common thread between the three. According to the most accepted current hypotheses, they all seem to be caused by an accumulation of deformed proteins in the brain. What changes from one to the other is the protein involved and the location of the deposits.<\/p>\n

So far, none of the diseases have a cure. The drugs most used in the initial stages are acetylcholinesterase inhibitors. These compounds, such as donepezil, galantamine and rivastigmine, alleviate memory loss and difficulties in learning new functions by increasing availability of the neurotransmitter acetylcholine in the brain, which is important for cognition. Another treatment option generally used in the more advanced stages is memantine, which modulates the levels of another neurotransmitter called glutamate. In high concentrations, glutamate is toxic to neurons, the cells that function as information-processing units in the brain.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

In the last two years, two new monoclonal antibodies have been launched that slow the progression of Alzheimer’s: aducanumab and lecanemab. Aducanumab, developed by American biotechnology company Biogen, was approved by the US Food and Drug Administration (FDA) in 2021 and is sold in the USA under the brand name Aduhelm. Lecanemab, manufactured by Japanese pharmaceutical company Eisai, was authorized by the FDA this year and is branded as Leqembi. Both are designed to eliminate clusters of amyloid beta, a protein typical of Alzheimer’s. These drugs, however, are expensive. The annual cost of treatment exceeds US$25,000 per patient and the results are modest: the pace of cognitive decline is only moderately reduced, meaning the disease continues to progress, just at a slightly slower rate.<\/p>\n

One possible explanation for the disappointing results is that the tests were carried out on people in intermediate stages of the disease, when protein plaque levels are already high. \u201cIn this phase, there are very large accumulations that are more difficult to break apart,\u201d says S\u00e9rgio Teixeira Ferreira, a biochemist from the Federal University of Rio de Janeiro (UFRJ) who studies the causes of Alzheimer’s. Thus, current studies are examining individuals with the disease in earlier stages. But expectations remain conservative. \u201cNeither studies with animals nor with human beings have offered any evidence that reducing the amount of plaques improves cognitive capacity and quality of life for people with the disease. Perhaps the most appropriate target would be the soluble \u2014 and toxic \u2014 forms, known as amyloid beta oligomers,\u201d says the biochemist.<\/p>\n

If there is no cure for these forms of the disease, is it even worth pursuing a diagnosis? The answer given by experts is yes. \u201cThere are some rarer forms of dementia that are reversible, such as those caused by thyroid gland disorders or vitamin B12 deficiency. Once the cause is treated, the problem disappears,\u201d explains Caramelli.<\/p>\n\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span>\n

What can be done
\n<\/strong>While there is not yet a cure for the most common types of dementia, and maybe there never will be, much can be done at the individual and public health level. The second most common form of the disease in many countries is vascular dementia. Caused by the blockage or rupture of the delicate blood vessels that irrigate the brain, leading to rapid cell death, it accounts for up to 35% of dementia cases in Brazil. The most important thing is that it can be prevented. \u201cVascular dementia is very preventable by properly treating the problems that affect the health of the vascular system, such as diabetes, hypertension, and obesity,\u201d says Claudia Suemoto, a geriatrician from the University of S\u00e3o Paulo (USP).<\/p>\n

British psychiatrist Gill Livingston, a specialist in mental health of the elderly at University College London, has headed The Lancet<\/em>\u2019s commission on dementia prevention, intervention, and care for several years. In two lengthy reports, one published in 2017 and the other in 2020, the commission listed 12 factors associated with the risk of developing dementia that can be managed throughout life. They include low education, obesity, diabetes, hypertension, alcohol consumption, and physical inactivity, all of which have a recognized influence on brain health. Each factor was given a distinct weighting, calculated based on the strength of its association with the disease, its prevalence in the population, and its individual impact on dementia. If all were well managed, it would theoretically be possible to prevent or delay the onset of up to 40% of dementia cases. “It is now known that many of dementia\u2019s manifestations are manageable and while the underlying illnesses are generally not curable, they may be modifiable with good care,” the authors wrote in the 2017 paper.<\/p>\n

\"\"Belisa Bagiani<\/span><\/p>\n

The effects estimated by the international commission, however, were based on health information from the populations of rich countries. In Brazil, the potential for prevention is even greater.<\/p>\n

In partnership with Livingston and researchers from Minas Gerais and Rio de Janeiro, USP\u2019s Suemoto and UNIFESP\u2019s Ferri recalculated the impact that managing these 12 factors could have in Brazil. If it were possible to eliminate them completely, cases of dementia would fall by 48.2%. They would decrease by up to 54% in the poorest regions of the country according to the data, which were published in Alzheimer’s & Dementia<\/em> in November 2022 and will be included in the dossier to be presented to the Ministry of Health.<\/p>\n

\u201cDementia is already a public health problem in Brazil. To reduce its impact in the future, we need to invest in policies that help reduce risk factors, especially those in early life and middle age,\u201d says Suemoto. \u201cIf action is not taken, we are going to see a tsunami of cases, because the population is living longer,\u201d warns USP neurologist Ricardo Nitrini, coauthor of the Alzheimer’s & Dementia <\/em>article and a pioneer in studies of the epidemiology of dementia in Brazil.<\/p>\n

The result will not be immediate, so the country must act as soon as possible. \u201cThe problem is highly imminent and any measures to alleviate it will only take effect in the medium and long term,\u201d emphasizes Paulo Mattos, a retired professor of psychiatry at UFRJ and head of Neurosciences at the D’Or Institute for Research and Teaching, which investigates the biological causes of Alzheimer’s. \u201cChanging these risk factors would take decades to have an impact at the populational level. Even at an individual level, the cognitive improvements provided by measures such as managing cholesterol levels and diabetes and performing regular physical exercise would take years to become evident,\u201d he explains.<\/p>\n

In Brazil, more so than in the rest of the world, the factor with the greatest potential for reducing dementia rates is educational level, especially in the poorest regions. The country only achieved universal access to primary education in the late 1990s, but according to 2019 data from the Brazilian Institute of Geography and Statistics (IBGE), less than half of people aged below 25 finish secondary education. If it were possible to eliminate the low educational level factor by ensuring nobody had less than eight years of formal education, 7.7% of dementia cases could be prevented. Among the poorest population, the reduction would be 9.6%.<\/p>\n

Increasing educational levels and physical activity and managing obesity, diabetes, and hypertension can reduce the risk of dementia<\/p><\/blockquote>\n

Studies done in Brazil and abroad suggest that literacy and other activities learned at school promote anatomical and functional changes in the brain, stimulating the creation of connections between neurons and increasing the density of the fibers that transfer information between different regions of the brain. Neuroscientist Yakov Stern of Columbia University, USA, dubbed this increased connectivity in the brain \u201ccognitive reserve.\u201d The theory explains why some people show no signs of dementia despite having large amounts of protein plaques. An individual with high cognitive reserve has multiple brain networks and other compensatory mechanisms that allow them to circumvent the effects of the disease for a longer time, often only showing symptoms in the more advanced stages.<\/p>\n

In Brazil, the type of impact provided by increasing educational level could also be achieved by better treating hearing loss, managing hypertension, and reducing obesity. \u201cImproving education alone is not enough,\u201d says Nitrini. \u201cWe need to encourage physical activity and a healthy diet. Many of these precautions need to be taken during pregnancy and in the earliest years of a child’s life, helping the brain develop a good cognitive reserve to overcome the adversities it will face during the person\u2019s lifetime,” advises the neurologist, who founded USP\u2019s Cognitive and Behavioral Neurology Group (GNCC).<\/p>\n<\/div>

\n \n \n \n <\/picture>Alexandre Affonso \/ Revista Pesquisa FAPESP<\/span><\/div>
\n

Not enough specialists
\n<\/strong>Paulo Henrique Bertolucci, a neurologist who specializes in dementia studies, has headed UNIFESP’s Brain Aging Center for almost two decades. He knows the scale of the problem and understands that in order to be able to care for the growing elderly population, dementia diagnoses and treatment cannot rely solely on neurologists, psychiatrists, and geriatricians. \u201cBrazil already has almost two million people with dementia and there are not enough specialists to care for them. Patients currently have to see at least two doctors and it takes more than a year and a half to receive a diagnosis. It is a long wait, which wastes a lot of time to act,\u201d he says.<\/p>\n

Bertolucci once created a 10-hour course to teach doctors in the public health system to identify and treat the disease, and offered it to a number of regional health administrations in S\u00e3o Paulo, but none showed any interest. \u201cOne of them was frank and said that doctors would not take the course during the week because they had to work, and nobody would give up their weekend for it,\u201d he recalls. But he refused to give up and he now teaches rapid screening protocols to residency students of the family health program at a public university. In September 2022, Bertolucci and other dementia experts published seven articles in the journal Dementia & Neuropsychologia<\/em> in which they presented the latest recommendations of the Brazilian Academy of Neurology for diagnosing, managing, and treating different forms of dementia. \u201cThe content is aimed at general practitioners, who in many places are the first point of contact with the patient. As well as treating diabetes, these professionals will have to learn to offer care for dementia,\u201d he says.<\/p>\n

It is not just the health system that bears the costs of treating the sick. Those who feel the economic burden the most \u2014 in addition to the physical and emotional strain \u2014 are the families. Caring for a person with dementia costs an average of US$1,370 per month, more than double the average monthly income in Brazil. About 40% of this amount (US$540) has to be covered by the family, as described by Ceres Ferreti, a nurse from the GNCC, in an article published in the journal PLOS ONE <\/em>in 2018. This \u201cindirect\u201d cost is calculated based on the time the caregiver \u2014 generally a close relative \u2014 devotes to caring for the patient and the income that they lose as a result of having to work fewer hours or quit their job (see<\/em> Pesquisa FAPESP issue n\u00ba 299<\/em><\/a>).<\/p>\n

\"\"Belisa Bagiani<\/span><\/p>\n

\u201cAlmost 40% of caregivers develop depression within a year of starting to care for a person with dementia,\u201d says Ferretti, who decided to study nursing and specialize in geriatrics and dementia after caring for her mother, who had Alzheimer\u2019s, for 13 years. “If the health system doesn’t start to react to the growing number of dementia cases, it will be chaos,” she says. She herself does whatever she can to help. During the pandemic, she created a WhatsApp group to offer free advice to caregivers and started holding live video sessions twice a week to answer questions and present new guidelines. Today, she helps some 100 families via the app \u2014 during the pandemic, there were more than 200. \u201cPeople come and go. I don’t remove anyone from the group,\u201d she says.<\/p>\n

According to an analysis published in Frontiers in Neurology <\/em>in 2021, the families reported an improvement in quality of life thanks to the support. Ferretti’s dream is to create a pilot project for the city of S\u00e3o Paulo and then, if it is successful, to extend it to other regions in the country. \u201cIt can be done,\u201d she says. \u201cThere is virtually no cost. All you need is a cell phone and a properly trained person.\u201d<\/p>\n

Projects
\n1.<\/strong> Cognitive reserve in a population with low education (n\u00ba 09\/09134-4<\/a>); Grant Mechanism<\/strong> Regular Research Grant; Principal Investigator<\/strong> Wilson Jacob Filho (FM-USP); Investment<\/strong> R$61,876.80.
\n2.<\/strong> Nosological diagnosis of dementia in a Brazilian population (n\u00ba 06\/55318-1<\/a>); Grant Mechanism<\/strong> Regular Research Grant; Principal Investigator<\/strong> Ricardo Nitrini (FM-USP); Investment<\/strong> R$123,173.15.
\n3.<\/strong> Argyrophilic grain disease (n\u00ba 12\/07526-5<\/a>); Grant Mechanism <\/strong>Doctoral (PhD) Fellowship; Supervisor<\/strong> L\u00e9a Tenenholz Grinberg (FM-USP); Beneficiary<\/strong> Roberta Diehl Rodriguez; Investment <\/strong>R$46,896.43.<\/p>\n

Scientific articles
\n<\/strong>BERTOLA, L. et al<\/em>. Prevalence of dementia and cognitive impairment no dementia in a large and diverse nationally representative sample: The ELSI-Brazil study<\/a>. Journal of Gerontology<\/strong>. jan. 22. 2023.
\nGBD 2,019 DEMENTIA FORECASTING COLLABORATORS. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: An analysis for the Global Burden of Disease Study 2019<\/a>. The Lancet Public Health<\/strong>.<\/strong> vol. 7, no. 2, e105\u2013125. feb. 2022.
\nBOLLER, F. e FORBES, M. M. History of dementia and dementia in history: An overview<\/a>. Journal of the Neurological Sciences<\/strong>. vol. 158 pp. 125\u201333. 1998.
\nLIVINGSTONE, G. et al<\/em>. Dementia prevention, intervention, and care.<\/a> The Lancet<\/strong>. vol. 390, no. 10113, pp. 2673\u2013734. dec. 16, 2017.
\nLIVINGSTONE, G. et al<\/em>. Dementia prevention, intervention, and care: 2020 report of the Lancet <\/em>Commission<\/a>. The Lancet<\/strong>. vol. 396, no. 10248, pp. 413\u201346. aug. 8, 2020.
\nSUEMOTO, C. K. et al<\/em>. Risk factors for dementia in Brazil: Differences by region and race.<\/a> Alzheimer\u2019s & Dementia<\/strong>. vol. 19, no. 5, pp. 1849\u201357. may 2023.
\nFERRETTI, C. et al<\/em>. An assessment of direct and indirect costs of dementia in Brazil.<\/a> PLOS O<\/strong>NE<\/strong>. vol. 13, no. 3, e0193209. mar. 13, 2018.
\nFERRETTI, C. et al<\/em>. Virtual support in dementia: A possible viable strategy for caregivers<\/a>. Frontiers in Neurology<\/strong>. vol. 12. aug. 13, 2021.<\/p>\n","protected":false},"excerpt":{"rendered":"The number of cases of the disease is increasing as the population ages and could reach 5.5 million by 2050","protected":false},"author":16,"featured_media":493208,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[156,159],"tags":[260],"coauthors":[105],"class_list":["post-493207","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cover","category-science","tag-public-health"],"acf":[],"_links":{"self":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/493207","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/users\/16"}],"replies":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/comments?post=493207"}],"version-history":[{"count":6,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/493207\/revisions"}],"predecessor-version":[{"id":495009,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/493207\/revisions\/495009"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/media\/493208"}],"wp:attachment":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/media?parent=493207"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/categories?post=493207"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/tags?post=493207"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/coauthors?post=493207"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}