The history of past perception of any subject influences, in large part, how it is perceived in modern times. As such, it is important to understand the perceptions surrounding a subject throughout history; dementia is no exception. The term “dementia” comes from the Latin roots demens, meaning “out of one’s mind” (Assal, 2019). With such a namesake, it is no wonder that the history of how dementia has been viewed is also wrought with much stigma.
The Classical Era and an Association with Childlike Qualities or Fragility
Symptoms of ailments and disorders have been collected and written down throughout much of human history (Yang et. al, 2016; University of Queensland, 2023). During the classical era, there was much greater interest in the process of aging. Pythagoras (570 - 495 BCE), a doctor and mathematician in Ancient Greece, defined the life course of humans into six stages: infancy, adolescence, adulthood, middle age, senescence, and old age. The latter two of these stages were perceived as a decline in mental ability, in which some people were seen to regress back to the “infantile state of mind” (Yang et al, 2016). While the Greek doctor Hippocrates (460 - 370 BCE) linked cognitive decline to brain injury, renowned philosopher Plato (428 - 347 BCE) attributed the primary cause of dementia to the cognitive mental decline that accompanies aging (Yang et al, 2016).
A contrary theory, and perhaps a more evocative one, on the cause of dementia symptoms was proposed by Roman politician, philosopher, and jurist Marcus Tullius Cicero (106 - 43 BCE). Cicero observed that aging doesn’t always lead to mental decline, and posited that the development of the disease was linked with people of “weak will” (Yang et al, 2016). This is notable because it was the first time that dementia was thought of as a separate condition from the normal course of aging. Following this, second century Turkish doctor Aretheus grouped dementia symptoms into an acute and reversible set of symptoms, called delirium, and a chronic disorder, called dementia (Yang et al, 2016).
The Middle Ages and Religion
In the Middle Ages (5th century to 14th century), the perception of dementia was largely influenced by the religious sentiment of the era. Rome fell around 476 CE and so did the classical era research into the condition of dementia. A Christian theocracy dominated Western society during this era and as a result, all mental illness was viewed as a form of punishment for Eve eating the forbidden fruit and banishing mankind from heaven (Yang et al, 2016). Sometimes, symptoms of dementia were associated with demon-possession and treated by religious means. The Malleus Maleficarum, written in 1486 by Heinrich Kramer and Joseph Springer, was a notorious example of the treatment of people with mental illness being influenced by religious ideology. This book was essentially a guide on identifying, judging, and executing witches, but included criteria of various mental illnesses, including schizophrenia, paranoia, mania, epilepsy, and senile dementia. As a result, thousands of people, mostly women, were ostracized or burned by society (Yang et al, 2016).
During the Middle Ages as well, the rise of Islam meant the spread of its associated philosophies around the regions that it conquered. Unfortunately, many of the prevailing notions in Islam also condemned many forms of mental illness. The word currently used to describe dementia in many Arab-Muslim societies is Kharaf, meaning “unraveled” or “loss of mind,” which is reflective of the perception of dementia by Islamic societies stemming from the Middle Ages. The term sheikh means “old person” in Arabic, but it has two different connotations in the Qur’an and the Hadith. In the Qur’an, sheikh is used to reference being advanced in religious knowledge, while in the Hadith, it references being advanced in age. The Qur’an frames old age as closeness to death in the developmental cycles of humans, similar to the classical era perception of aging. The Prophet Muhammad is also believed to have written that Allah had given a cure for all illnesses but one: old age. Sharia scholars believe aging and regression associated with aging are normal parts of aging rather than punishments for sin. Essentially, though much of old Islamic texts perceive dementia as a normal part of aging, there was nevertheless stigma toward mental illness (Daher-Nashif et al, 2020).
The Modern Era and Scientific Stigma
The modern era emphasized the spirit of scientific investigation into dementia. Eventually, dementia as a diagnosis was accepted as a medical term by the aid of French doctor Philippe Pinel. Even amidst all the scientific inquiry of the time, the emotional nature of the illness was noted by his student, Jean Etienne Dominique Esquirol, who described dementia as a disability “shown in discernment, intellectual ability, and will due to brain diseases” and results in loss of “joyfulness” and “richness” in life (Yang et al, 2016).
In the 19th century, individuals with dementia were recognized as patients who needed care from specialists known as “alienists.” Scientific exploration of dementia continued with increased fervor, and by the end of the century, several studies that would lead to breakthroughs into the study of dementia were being conducted. One of these studies was run by Otto Ludwig Binswanger (1852 - 1959) with the help of one Alois Alzheimer on the subject of neurosyphilis, which had been known since 1857 to lead to “general paresis” or insanity. By 1894, there were several forms of vascular dementia reported in the academia of the time; however, this study of “presenile dementia,” which would later be called Binswanger’s disease by Alzheimer, made its first appearance in the literature.
In an absolutely pivotal 1906 longitudinal case study, Alois Alzheimer documented in detail the progressive symptoms of a woman with what would now be considered early-onset Alzheimer’s (Assal, 2019; Ballenger, 2017; University of Queensland, 2023; Yang et al, 2016). In 1907, Alzheimer published his findings of the pathological indicators of Alzheimer’s Disease in a paper that was met with much societal disapproval. Around the same time, Oskar Fischer discovered Alzheimer’s plaques and neurofibrillary tangles. Emil Kraepelin (1856 - 1926), who made his mark in the field when he classified dementia into senile and presenile dementia, named the disease “Alzheimer’s disease” in 1910 after his student, who had discovered the pathological features of presenile dementia while under his tutelage. As a result, Fischer’s name was relegated to the background.
In America during the 1950s, economic reasons brought the nation two steps backward in classifying and treating dementia. When several government and state-funded hospitals were established in the 50s, local welfare officials were given strong financial incentive to classify the elderly with dementia. This would mean they couldn’t live independently anymore and would be classified as “insane” so that they could live in state-funded hospitals. Since dementia was seen as an incurable illness, hospitals were in danger of being seen as custodial institutions. To counter this movement, there was a group of psychiatrists, led by David Rothschild, who from the 1930s to the 1950s, began explaining the course of dementia as a normal aging process. This led to a more psychiatric-type treatment through therapy and preventive strategies. In the 1940s and 1950s, there arose a theory that dementia was merely a side effect of “adjustment,” where society was unable to meet the social demands of the aging population. During this time, there were numerous policies and programs to keep more elderly people engaged and active so that their mental functioning would remain longer. This frame of thinking with regards to dementia led to a transformation in how aging was perceived in the United States. Programs, like Medicare, and legal action taken, such as through the Older Americans Act, were rolled out during this time in response (Ballenger, 2017).
From the 1960s to the 1980s, Alzheimer’s was the prototypical form of dementia, meaning much of the research and practices were focused around this particular condition (Assal, 2019; Yang et al, 2016). In the 1960s, with the advent of the electron microscope, the plaques and tangle characteristics of Alzheimer’s Disease were visualized. In the 70s, a CT scan could show a brain with reduced volume. In the 80s, molecular and biochemical advances allowed for the identification of tau and amyloid-beta as parts of tangles and plaques (University of Queensland, 2023). With the transition of viewing Alzheimer’s more as a brain disorder came the possibility of a cure rather than the then treatment via palliative care.
This is important to note because how a disease is defined affects numerous other factors. It affects doctor-patient relationships, individual and social identities, and discourse in society on the issue. With the movement toward religious thinking, dementia was seen as a supernatural fate. Its treatment during this time was nonexistent, unhelpful, and even harmful at times. Later, with the movement toward scientific thinking, dementia was investigated as a disease, and the treatment began to focus on caregiving and then even a cure. As such, cultural context is important when thinking about any disease.
This is why in the 70s, when dementia again emerged at the forefront of academic geriatric research, it did so with a biological perspective along with many other psychological disorders in what was known as the Biological Revolution in Psychiatry. More funding was needed to study this disease, but that could only be ascertained by framing it as a disease rather than a psychosocial phenomenon. Unfortunately, despite its initial goal of understanding the disease process better through research in order to help more people, this movement ended up doing much harm as well. Its extreme shift to biological language meant the previous emphasis on engaging the mind, staying active, and receiving adequate care was tossed aside for new grant proposals. Much of the push for research funding involved apocalyptic language to describe those affected by dementia. The cognitive losses from dementia were portrayed as so extreme and irrevocable that many people began to question the humanity of those who were far in their disease process (Ballengar, 2017).
Recently, there has been much more understanding of the heterogeneity of dementia itself. It has been established that different combinations of symptoms can lead to the same behavioral and cognitive decline present in dementia. Dementia has come to be seen as a major public health issue because of the aging global population. There have been a string of clinical drug trial failures, which indicate a dire necessity to search for a cure. There is much research around Alzheimer’s Disease still, but other types of dementia are gaining in popularity, meaning that research projects are becoming more and more specialized. The rate of dementia in America has decreased overall. Some say this is because of new research and treatment options, but the success is likely due in part to the combined biomedical and social approach that the major public health issue perspective has brought. Still, there is a far way to go in the search for effective treatment for the majority of dementias.
About the Author
Shadhvika Nandhakumar is a rising senior at Vanderbilt University, studying Neuroscience and Medicine, Health, and Society.
- Assal, F. (2019). History of dementia. Frontiers of neurology and neuroscience. Queensland Brain Institute (2017). History of dementia research. Queensland Brain Institute - University of Queensland.
- Ballenger, J. F. (2017). Framing confusion: Dementia, society, and history. Journal of Ethics | American Medical Association.
- Yang, H. D., Kim, D. H., Lee, S. B., & Young, L. D. (2016). History of Alzheimer's Disease. Dementia and neurocognitive disorders.
- Daher-Nashif, S., Hammad, S.H., Kane, T. (2021). Islam and Mental Disorders of the Older Adults: Religious Text, Belief System and Caregiving Practices. Journal of Religion and Health.