The Evolving Classification of Dementia
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Cult Med Psychiatry (2011) 35:417–435 DOI 10.1007/s11013-011-9219-x OPINION The Evolving Classification of Dementia: Placing the DSM-V in a Meaningful Historical and Cultural Context and Pondering the Future of ‘‘Alzheimer’s’’ Daniel R. George • Peter J. Whitehouse • Jesse Ballenger Published online: 19 May 2011 Ó Springer Science+Business Media, LLC 2011 Abstract Alzheimer’s disease is a 100-year-old concept. As a diagnostic label, it has evolved over the 20th and 21st centuries from a rare diagnosis in younger patients to a worldwide epidemic common in the elderly, said to affect over 35 million people worldwide. In this opinion piece, we use a constructivist approach to review the early history of the terms ‘‘Alzheimer’s disease’’ and related concepts such as dementia, as well as the more recent nosological changes that have occurred in the four major editions of the Diagnostic and Statistical Manual since 1952. A critical engagement of the history of Alzheimer’s disease and dementia, specifically the evolution of those concepts in the DSM over the past 100 years, raises a number of questions about how those labels and emergent diagnoses, such as Neurocog- nitive Disorders and Mild Cognitive Impairment, might continue to evolve in the DSM-V, due for release in 2013. Keywords Alzheimer’s disease Á Dementia Á Diagnostic and Statistical Manual Á Constructivism Á Brain aging D. R. George (&) Department of Humanities, Penn State College of Medicine, 500 University Drive, Hershey, PA 17033, USA e-mail: [email protected] P. J. Whitehouse Department of Neurology, Case Western Reserve University, University Hospital Systems, 10900 Euclid Avenue, Cleveland, OH 44106, USA J. Ballenger Department of Science, Technology and Society, Penn State University, 201 Old Main, State College, PA 16802, USA 123 418 Cult Med Psychiatry (2011) 35:417–435 Introduction A century ago, Alzheimer’s disease (AD) was formally established as a distinct nosology in an influential German psychiatry textbook. Since then, the concept has undergone various permutations, and its ongoing evolution carries important implications for the clinical treatment and cultural placement of persons who are given the diagnosis (Herskovits 1995; Whitehouse et al. 2000; George 2010). Today, AD is said to affect 35.6 million people worldwide and 5.3 million people in the United States (Prince and Jackson 2009). By 2040, AD is predicted to affect over 80 million people worldwide, 70% of whom will reside in developing countries (Essink-Bot et al. 2002). Alzheimer’s afflicts the genders differently with more women than men being affected (Barnes et al. 2005) and serving as careers for others with the condition (Alzheimer’s Association and National Alliance for Caregiving 2004). A recent meta-analysis (Plassman et al. 2010) of existing data has failed to identify a singular causal or preventive pathway for a condition that emergently appears to be heterogeneous and age related (Whitehouse and George 2008). Such findings cast doubt on the dominant Western biomedical model of AD, which regards the condition as singular and unrelated to aging (Richards and Brayne 2010). This opinion piece provides a general constructivist overview of the multifaceted historical, social and cultural processes through which severe brain aging has been shaped into an internationally known disease category called ‘‘Alzheimer’s disease’’ over the last 100 years, particularly over the past four decades. Constructivism emphasizes the culture, history, meaning and constructed nature of medical phenomena (Gaines 1992a, b) and informs the processual framework for this analysis that views disease development as an ongoing social process without terminus (Turner 1969). First, we place the AD label in a salient historical context by describing the dominance of neurobiological approaches to brain aging that were set in motion by the discoveries of the German psychiatrist Dr. Alois Alzheimer in the early 20th century. Subsequently, we describe the evolution of the classification of Alzheimer’s-type dementia in the DSM. Finally, we consider how the concepts of AD, dementia and other related diagnoses might continue to evolve in the DSM-V, due for release in 2013. Ultimately, this article adds to the growing interpretive literature on AD (Gubrium 1986; Fox 1989; Lyman 1989; Herskovits 1995; Holstein 1997; Whitehouse et al. 2005; Ballenger 2006; Hendrie 2006; Whitehouse and George 2008) while significantly contributing to what others have identified as ‘‘the meager literature on the history of AD’’. It also provides a speculative framework for future critical inquiry on subsequent publications of the DSM, in which AD will continue to evolve. Early Terminology of Dementia While the phenomenology of dementia was first recorded in various genres of ancient Egyptian writing, a number of publications have credited the ancient Greeks with having recognized and formulated the concept of dementia (Cohen 1983; 123 Cult Med Psychiatry (2011) 35:417–435 419 Torack 1983; Mahendra 1987). Memory loss and general intellectual decline, as early symptoms of the aging process, were recognized through the ages in the writings of Aristotle, Galen, Hippocrates, Lucretius, Cicero and both the Elder Seneca and the Younger Seneca in the early Roman Empire (Berrios 1987; Karenberg and Forstl 2006). The concept of dementia—a term said to have been coined by Celsus in the first century A.D.—has long carried social implications for those so diagnosed and has been associated with reduced civilian and legal competence, as well as with entitlement to support and protection. According to the writings of Solon and Plato, mentally impaired elders were incapable of making a will and were not eligible for official civilian positions but also could not be charged with unlawful acts (Kurz and Lautenschlager 2010). Similarly, in the Roman era, the concept of dementia was used to reduce the abilities of patients to enter contracts, handle their own affairs, hold public office and be criminally responsible (Berrios 1987). Modern legal systems contain similar provisions for those diagnosed with dementia. Literally meaning ‘‘away’’ or ‘‘out’’ of ‘‘mind’’ or ‘‘reason’’ in Latin, the term ‘‘dementia’’ entered the English language from the French ‘‘de´mence’’ via the French psychiatrist Philippe Pinel (Gaines 2006), who made notable contributions to the categorization of mental disorders in the late 18th and early 19th centuries. Over the centuries, the phenomenology of dementia has been causally associated with witchcraft, moral degeneracy, bad blood and a dissipation of vital energy from the brain, among other factors (Gallagher-Thompson et al. 1997). Today’s standard reductionist framework for dementia explicitly associates the condition with individual brain pathology, and the term refers to the progressive loss of cognitive function in multiple areas: memory, attention, language and problem solving. Medical anthropologists have observed that reductionist biomedical taxonomies such as AD conceptualize illnesses as ‘‘internalizing’’ rather than ‘‘externalizing,’’ in that they give primacy to biological or physical signs that can mark a disease’s progression rather than associating etiology with psychosocial or cosmic relations (Gaines 1992a, b; Lock 2005, 2010). Prior to Dr. Alzheimer’s birth in 1864, the dominant European literature of mid- to late-nineteenth-century neuropathology reflected a more ‘‘internalizing’’ concep- tual orientation, as researchers were sensitive to the texture of the brains of the apoplectic and demented. ‘‘Cerebral softening’’ was associated with atherosclerosis and described in a language of liquefaction that united physiological, psychological and moral decay, the latter factor representing a vestigial ‘‘externalizing’’ dimension to dementia held by many scientists (Cohen 1998, p. 21). Suffering in old age was largely perceived as inevitable and natural, a fact of existence that was to be ameliorated but not eliminated (Katzman and Bick 2000). However, in the late 19th century, brain aging came to be understood increasingly as an internal biological event, as scientists began using microscopy as well as sectioning and staining techniques to note changes in the brain tissues and blood vessels of the elderly and associated this pathology with the loss of cognitive functioning (Engstrom 2007). By the beginning of the 20th century, the medical literature on dementia had come to focus almost entirely on brain pathology, and the term ‘‘organic’’ was used to demonstrate that psychopathological symptom clusters in mental disorders could be 123 420 Cult Med Psychiatry (2011) 35:417–435 associated with chronic lesions on the brain (Kurz and Lautenschlager 2010). The psychiatrist, E. E. Southard, wrote that his colleagues had begun to eschew the contribution of external factors for dementia, having found ‘‘little convincing evidence that social factors play much part [in dementia]. Whatever the causes of brain atrophy, it seems they cannot be social’’ (in Ballenger 2006, p. 19). As knowledge of brain pathology widened, the cognitive changes in old age that previous generations of researchers had resigned themselves to were now seen as having visible, specific and identifiable (with the aid of a microscope) correlates in the brain that could potentially be eliminated through greater reductionist understanding. Brain aging had crossed the threshold from the normal to the pathological, and there appeared to be good reason to replace the vague concept of ‘‘senility’’