Diogenes Syndrome: Of Omelettes and Souffles

Abstract

An invitation to write an editorial provides a welcome opportunity to review a corner of our field. To my pleasant surprise, reflecting on the subject of Diogenes syndrome gave me much more because it reminded me why I love geriatrics. With eggs, air, and flavoring, any cook can make an omelette. But in the hands of a chef these humble components are transformed into a souffle. Similarly, an experienced geriatrician (using the term to include all the specialties with an interest in older people) can assess a patient others regard as untreatable and, with a thoughtful evaluation and simple interventions, work small wonders even for someone in the dismal straits implied by this syndrome. Diogenes syndrome, also known as senile squalor, senile self-neglect, or social breakdown in the elderly, is characterized by social withdrawal, self-induced abysmal living conditions, and lack of concern about receiving assistance. The interesting and timely case report by Reyes-Ortiz and Mulligan1 in this issue invites consideration of several issues, and I will comment on three: the nature of the disorder, the terminology used to describe it, and how it relates to the contemporary issue of end of life decisions. I have seen, as has every geriatrician, many patients who lived in the most disturbing conditions imaginable, particularly when I worked for a community-based geriatric outreach service in the mid 1970s.2 We dreaded the next referral of a "cat lady," as this usually meant we would be confronted with hoarded possessions and animal excrement. We became skilled in doing an entire interview standing. After a few surprisingly good outcomes, we began to approach new referrals with at least a modest sense of hope. Medically, my primary recollection is that we never knew what might turn up in such a case, with the possibilities ranging from late life schizophrenia to dementia to brain tumor. See also p 1486 This leads to my first point: "Diogenes syndrome" (a term I do not find particularly useful) is not a single entity, any more than anemia or agitation are. The two original case series the authors report3, 4 (both from England), and one other I located5 (from Ireland), show great diversity among cases in terms of cognitive status, psychiatric diagnoses (or even lack thereof), socioeconomic status, and medical comorbidity. It is tempting to look for common elements among the cases, as many reports have done, including the one in this issue that states that Diogenes syndrome patients are usually professionals with successful careers, high intelligence, and no financial deprivation. I could not find convincing evidence of such a pattern, and the only thread that seems to run through many (but not all) of the cases is some preexisting personality disorder. A few findings from the above mentioned reports support my contention that Diogenes syndrome is a non-specific descriptive designation that includes a wide range of psychiatric and medical conditions. Macmillan and Shaw's paper of 72 cases contains 34 subjects with "normal" mental state and 38 who were psychotic, with the latter group including 23 cases of "senile psychosis," three of manic-depression, three of chronic alcoholism, and a smattering of others including schizophrenia and paraphrenia. The paper by Clark et al. reports many different physical conditions in these patients, including congestive heart failure, cerebrovascular disease, bronchopneumonia, malignancy, and Parkinson's disease, all of which occurred in more than one of their 30 patients. And Wrigley and Cooney's series of 29 cases includes patients spread fairly evenly across all socioeconomic groups, with about half being demented. Having made my case for heterogeneity, point two is terminology. Once a term is coined to refer to a constellation of findings, it is difficult to replace, particularly if it is catchy. I experienced this many years ago with "pseudodementia," a label intended to refer to patients who appeared demented but were in fact depressed, and I argued in these pages6 that the term was a poor one, mainly because it diverted attention from the clinically more common possibility of mixed dementia and depression, a particular research interest of mine.7 Diogenes syndrome also strikes me as a flawed term, if for no other reason than having the irksome feature, pointed out in some of the papers Reyes-Ortiz and Mulligan cite, of not being an accurate portrayal of the philosopher whose name has been borrowed. While Diogenes may have advocated self-sufficiency and keeping ones needs to a minimum, I did not find any other parallels to the cases described and doubt that anyone living in the conditions associated with this syndrome would be mentioned, as is Diogenes, in encyclopedias over 2000 years later. I agree with Cooney and Hamid8 that the term Diogenes syndrome has served the useful purpose of increasing medical awareness of the condition, but I prefer the terms senile self-neglect or social breakdown in the elderly, which have also appeared in reports on the topic, both to avoid the historical misimplication and because they convey a little more of a sense of clinical heterogeneity. My personal choice for a name is syndrome of extreme self-neglect as it connotes something serious and avoids the troublesome word senile. Whatever term we use, it is essential to pay attention to the encouraging examples of potential for improvement. I was impressed by a report by Ungvari and Hantz9 from New Zealand's South Island on two hospitalized cases that responded very nicely to a combination of pharmocologic management and well chosen behavioral reinforcement techniques. Earlier reports also contain strong statements in favor of treatability, and one that particularly delighted me was from Macmillan and Shaw's paper of 30 years ago stating, "The success of attendance at the day centre was easy to see; there was soon a marked improvement in the patients' physical and emotional state and in their morale." Day centers are close to my heart, after almost 10 years of directing two successive Robert Wood Johnson Foundation national demonstration programs on them,10 and their potential role in treatment is great. Also, some individuals might be good candidates for Joann Lynn's proposed MediCaring,11 which would substitute community-based low-tech services for the traditional acute care orientation of Medicare. The above treatment successes lead me to the third point, end of life decisions. They reinforce my already strong belief that physician-assisted suicide would be a great mistake because of the likelihood of abuse. Patients with the syndrome of severe self-neglect, many of whom are isolated and have no natural advocates, would be easy targets for aggressive "self-determination" advocates who might extract a request for physician-assisted suicide. I am not reassured by the prospect of guidelines to prevent such occurrences; there is considerable evidence that guidelines are frequently not followed in the Netherlands,12 where physician-assisted suicide is quasi-legal, and there is no reason to think we would be any more successful with guidelines than the Dutch have been. And finally, as described above, there is evidence that such patients can be helped, similar to many other situations that, at first glance, appear incorrectly to be untreatable, such as depression in the face of severe medical illness. How we approach patients with severe self-neglect is an indication of what makes geriatricians different, and it reflects certain personality characteristics to be found in those among our ranks, notably patience, creativity, and empathy. For the past several years I have enjoyed showing slides of three paintings of grain stacks by Monet as an aptitude test for geriatrics. I invite the audience to decide if they are simply needless repetitions, or remarkably different by virtue of season of the year, color, and lighting. Naturally, those who see them as tiresome reiterations are not well suited for geriatrics. Those who appreciate the differences will find great satisfaction in sorting through a complex situation and then applying simple strategies to achieve success where others find only frustration. To a chef, taking the simplest of ingredients and making an elegant souffle is a great thrill, and in medicine there is nothing quite as exciting as treating those thought to be untreatable.