an ethnography of dementia

ROMA CHATTERJI

AN ETHNOGRAPHY OF DEMENTIA

A case study of an Alzheimer’s Disease patient in the Netherlands

ABSTRACT. The experiences of dementia sufferers have rarely been examined in socio-logical literature. This article seeks to describe the experiences of one Alzheimer’s Diseasepatient at the point of institutionalization in order to address a series of questions. CanAlzheimer’s Disease patients be thought of as experiencing subjects? Is experience tied tomodes of expression? An answer to this set of questions is sought by problematizing theconcept of ‘voice,’ freeing it from a restricted location in natural language to embed it inother forms of embodiment.

INTRODUCTION

In this paper I try to construct an ethnography of Mr. Rijder, an Alzheimer’sDisease patient whom I met in the course of my fieldwork in a Dutchverpleeghuis(nursing home).1 I do this by examining the discourses thatwere generated about him by his family and by the medical institutionsthrough which he passed. In a sense these discourses form a narrativein which Alzheimer’s Disease becomes the paradigm linking Mr. Rijder,his family and the medical institution. This narrative shapes the moralworld2 in which he is located and through which he experiences his illness.However, at the level of face-to-face interaction, this plot becomes frag-mented as different voices engage with each other, each one respondingto Mr. Rijder’s institutionalization, evaluating it emotionally and therebyinterrogating the trajectory that the narrative seeks to affirm.

LISTENING TO THE VOICE OF DEMENTIA

The analysis of disease processes as discursive formations, configuredby both administrative structures and knowledge systems, has generatedpowerful critiques of medicine. Thus, De Swaan (1988, 1990) describesthe medical regime as an organ of civil administration. While discussingthe evolution of the Dutch welfare state he says that its large scale collec-tive care arrangements have led to the bureaucratization of everyday life.

Culture, Medicine and Psychiatry22: 355–382, 1998.© 1998Kluwer Academic Publishers. Printed in the Netherlands.

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‘Expert regimes’ as organs of the state offer specialized problem solv-ing models to its citizens. There is an increasing dependence on theseexpert regimes and a decline in the use of individual initiative. ‘Proto-professionalization’ results as ordinary people adopt the professionalproblem solving vocabulary which in turn increases their demand for theprofessional services provided by the state.

Writing specifically about dementia, Gubrium (1986) shows how adiagnostic field is created and then reproduced discursively in differentsocial domains. Thus, according to Gubrium, a diagnosis of Alzheimer’sDisease may not be a referential statement describing a process of cogni-tive decline and memory loss but rather a tool for legitimizing a certaincourse of action. Here the characterization of a person’s behaviour aspathological may coincide with the family’s demand to seek his or herinstitutionalization. The diagnosis then seeks to formalize this demand ina managerial problem solving model (see also Johnson and Johnson 1983;Kitwood 1993).

Even though these critiques have been successful in demonstratingthe hegemonic power of the medical model and its ability to appropriatecommunicative and integrative structures like the family,3 they are lessuseful for exploring the subjectivity of demented persons.

There is almost no sociological literature on the experiences ofdementia sufferers, on their emotions, desires and intentions – apart fromthe representations offered by care givers, which often tell us more aboutthe subjectivity and experience of the care givers than that of their patients(Kitwood 1993; Cohen 1994).4 Is it the speech impediment that mostdemented persons suffer from that forms a barrier to communication? Isverbal language the only mode by which we have access to other’s expe-rience? These questions acquire a special urgency when we contrast thesilence that surrounds dementia sufferers with the growing body of workon illness narratives that chronicle the experiences of people with otherforms of chronic ailment (see Kleinman 1988; Good 1994; Garro andMattingly 1994).

In a recent article Desjarlais (1994) attempts to respond to thesecrucial issues by problematizing the concept of experience itself. He saysthat given its distinguishing features – intentionality, depth, reflexivity,temporal coherence and intersubjective accessibility through narrativiza-tion – experience is one possible mode of being in the world rather thana constant in human life. For some persons who live precariously on themargins of society, under conditions of extreme deprivation, existence maybe reduced to a succession of discrete events that cannot be configured intoa temporally coherent narrative that looks back to a past and forward to an

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anticipated future. For such persons, he says, life becomes an exteriority.It is not experienced as a continuous narrative that can be made availableto a community of listeners.

I share Desjarlais’s concern that the tendency to assume a link betweenexperience and the narrativization process in much of the current socio-logical literature may lead to the exclusion of persons who are unable toemploy their experiences in this fashion. Perhaps a way out of this impasseis to think of alternate ways by which experience can be articulated.Following Cohen (1995), I suggest that ‘voice’ rather than ‘narrative’ maybe a more suitable term to approach the experience of dementia. Unlikethe narrative mode, ‘voice’ does not presume a temporal coherence; it doessuggest a dialogic form, as it is also premised on the act of listening. Sinceas Cohen argues voices vary with our ability to hear them, then our lack ofknowledge about the subjectivity of demented persons may be due to ourinability to listen.

One would assume that phenomenologically informed works onconsciousness and dementia would fill this lacuna. However, phenomeno-logical critiques that accuse medicine of using language referentially tocreate models of facticity may have unconsciously accepted the medicalrationalization that an impoverishment of expressive ability must indicatea diminished subjectivity.5 As a result, they have projected their incapacityor unwillingness to listen on to the demented persons themselves turningthem into absent objects of discourse.

But what of the medical institution and the discourses that it produces?Following Weber, such institutions may be conceptualized as bureau-cratic embodiments of instrumental rationality legitimized by rational legalstructures of authority. But if we shift perspectives and view them from theregister of the imaginary, then they acquire another life. From the perspec-tive of the ‘social imaginary’ (Ricoeur 1978) medical discourse seems tobe molded by mediatary practices that serve as efforts to bridge the gapbetween face-to-face relationships and structures of objectivization.

Thus even though Mr. Rijder’s status as an Alzheimer’s Disease patientforms the backdrop against which this narrative unfolds, it is not its centraltheme. This status is accepted by the family and is used by them to ratio-nalize their dependence on a professional network of care. The site ofcontestation that provides the agonistic structure of the narrative is hisconsciousness. Paradoxically, even in the exercise of medical power, itis the institution that provides a locale where that consciousness can bevoiced.

This account details the conflicts and the negotiations that accompanyMr. Rijder’s passage from one therapeutic institution to another. These

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form the pre-history of his admission to theverpleeghuiswhich is the pointwhen I first met him. The admission itself was the culmination of a series ofcompromises between Mrs. Rijder and Mr. Rijder’s case workers in whichdifferent care arrangements were tried out and rejected. The social workerof theverpleeghuiswas determined to find an alternative arrangement forhim because she felt that he was too “good” for a psychogeriatric ward.She was scared that a “negative” reaction to the institution would lead to afurther deterioration of his condition.

But in spite of the institution’s awareness of Mr. Rijder’s consciousness,its concern is still bound to a managerial logic. Herein lies the pathos of hissituation. The social worker’s concern is with his adjustment to the wardenvironment and with the evaluation of his condition vis-à-vis his family. Itis only from the perspective of his status as an Alzheimer’s Disease patientthat all the significant relationships in his lifeworld are viewed. As Ricœur(1978) says, the gap between actual practice and the interpretation throughwhich the bureaucratic institution becomes aware of itself and its practiceis filled with schematization and stereotyping. It is here that mutualitybased on empathetic access to another gives way to an anonymity that mayobjectify him or her.

But, as we shall see, the institution does provide a space for some kindof presence to emerge – even if it is a fragmented one. Mr. Rijder can beheard through the interpersonal relationships that he develops with someof the nurses and for a while with me. How is one to write about suchan elusive presence? A third person descriptive account may distance himeven further. But a hermeneutic analysis of his experiences, their transfor-mation into a text, carries a greater danger – that of appropriating his voiceand projecting the author’s intentions on to his.

It is only in the role of witness, by being present to his suffering, thatone may claim to write an ethnography about him. For me he becomes avoice through our interactions together, face-to-face. But in my writing heis object as well – not merely in the extracts of the institutional records thatI quote but also in the passages in which I describe the visits to his homewith theverpleeghuissocial worker. Therefore, even though my narrativeconsists of a sequence of events I do not wish to call this account a story.Stories are texts to be interpreted. Instead I have tried to present the differ-ent voices that speak of him or to him. Each has its own ‘physiognomy,’ asCavell (1994) would say, its own way of revealing meaning or of resistingit.


Mr. Rijder’s institutional career

I begin my narrative with a brief account of Mr. Rijder’s institutionalcareer. I present summaries of case reports that chart his movement throughinstitutions that are progressively more totalizing in character.6 Each oneof these institutions offers a particular conception of the self embodied in acertain behavioural norm. This norm is defined by the standard of manage-ability articulated by the problem solving mechanism of the institution.An individual can pass through a series of such institutions, his or hercondition being defined in terms of the normative standard of each insti-tution. This point has been developed by Johnson and Johnson (1983) andKitwood (1993) among others. But what emerges from the ethnography ofMr. Rijder’s institutional trajectory is that this standard implicitly refersto a normative model of sociality based on an ideal of communicativerationality. For Habermas (1987) communicative rationality is a consensusbased communication which presumes a common intersubjective worldof meaning and action. This perspective frames the particular pattern ofMr. Rijder’s institutional career using an implicit standard of meaningfulinteraction to judge his location in a specific group.

When I first met Mr. Rijder he was a temporary resident at ReginaPacis, averpleeghuisin Arnhem. He was a “vacation patient” while hiswife took a short trip away from home. This was really in the nature of anexperiment, planned by the social worker in charge of Mr. Rijder’s case.The intention was to see whether Mr. Rijder could adjust to a differentkind of living arrangement – in a residential institution rather than at home,and to a life that did not include Mrs. Rijder’s constant presence. She hadhypertension and felt that she could not cope with the problems broughton by his dementia.

The experiment did not prove to be a success. Mr. Rijder found anunfastened window on his first floor ward and managed to climb on to theroof. He resisted all attempts by the ward authorities to coax him insideand was injured in the process of being forcibly carried down.

I met him soon after this incident in my capacity as a trainee (stagiaire)attached to the social worker in charge of the psychogeriatric section ofthe verpleeghuis. He acknowledged my presence politely though some-what hesitantly and responded to the social worker’s enquiries about hishealth. There seemed to be no visible signs of his recent ‘suicide attempt,’of which I had been informed, other than a bandage tied around his armand a bruise on his forehead. In the months that followed I was witness tothe tense negotiations that accompanied his admission to theverpleeghuis,his stay there, and finally, his death.

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THE FIRST CONTACT WITH THE WORLD OF THEINSTITUTION: THE SOCIAL WORKER’S REPORT

The ‘case’ of Mr. Rijder began in 1985 when thesociale verpleegkundige(district nurse) of the department for old people of theBasis GezondheidsDienst(Basic Health Service) was asked by the doctor concerned to takecharge of the Rijder family. The problem centred around Mrs. Rijder whocould not cope with the changes that her husband’s dementia had led to.One of the social worker’s reports describe her as being “hypernervous andexcitable” because she found it difficult to accept her husband’s apraxia.7

Mr. Rijder reacted “negatively” to that tension. They lived in a small,second floor flat made even more cramped, according to Mrs. Rijder, by herhusband’s restlessness. He would follow her around the flat and get in herway. He rarely went out and would lose his way when he did. The reportdescribes him as “having increasing memory and orientation disturbances,restlessness (especially a tendency to wander) and aggression towards hiswife.” Mrs. Rijder had developed a fear of going out of the house alone andwas under fairly heavy medication. The district nurse who had maintainedintensive contact with the family for a year before the final admission totheverpleeghuistried at first to bring in extramural help –wijkverpleginggezinszorg(domestic help)8 – to ease the strain that Mrs. Rijder was under.But she rejected this out of hand. An application was made for his admis-sion to thedagbehandeling(a day care section for psychogeriatric patients)attached to theverpleeghuis, but admission was not realized because Mr.Rijder refused to go there. The report of the social worker attached to thedagbehandeling(see note 1), who visited him at home, states that he triedto parry and laugh off all suggestions that his restlessness might be thereason for their domestic difficulties. In fact for both husband and wife itwas the size of the flat that was thought to be the major problem whichmoving to a bigger house with a garden would resolve. This perceptionhowever, was not shared by the professional care givers.

After Mr. Rijder’s refusal to go to thedagbehandelinghe was admittedto a dagopvang(day centre). This was less oriented towards therapeutictreatment and more towards recreation. He did not want to join this eitherbut was tempted with an offer of a group with which he could play billiards.(He had professed to being an ardent enthusiast of the game). It soonbecame apparent that he was not up to playing billiards anymore, but hewas allowed to stay because he had got used to going to thedagopvangandenjoyed the company there. The report of another social worker from theverpleeghuiswho also regulated admissions to thisdagopvangstates thathe felt the need for social contact. He enjoyed talking about his years in


military service as a cavalryman and about horses. But further deteriorationfollowed and the staff of thedagopvangfound that he did not fit in with thegroup any more. The social worker told me that he had become a distur-bance – he could not participate in the games, his speech was becomingmore “complicated” (ingewikkeld) and the other people did not want himin the group.9

Mr. Rijder was transferred to thedagbehandelingattached to theverpleeghuis. But before long a crisis developed. Thedagbehandelingis oriented to treating people so that they can stay at home as long aspossible. Mrs. Rijder began to feel “oppressed” (benauwd) and phonedthe district nurse to say that she could no longer cope with her husband inthe house. The daughter-in-law told the social worker that they no longerhad a life of their own. They had to spend whole afternoons and eveningswith the in-laws because Mrs. Rijder would phone them every time therewas a mini-crisis with her husband. The social worker’s report dated April15, 1986, states that matters had come to a head – Mr. Rijder had beenincontinent at night for the last fourteen days. There was “more protest,more conflict with his wife, and his apraxia had also increased.” But thesocial worker still refused to consider his admission to theverpleeghuis.She felt that he was still very conscious of his surroundings and wouldfind the environment of a psychogeriatric ward traumatic. They arrived ata compromise to shift Mr. Rijder to thedagbehandeling. He was to gothere three times a week but this could be increased to alleviate the strainat home. Mrs. Rijder agreed to accept this as an interim arrangement. Hewas admitted to thedagbehandelinga few weeks later.

The next turning point in his case history was his admission to theverpleeghuisfor a week while his wife was on vacation. This proved tobe very dramatic. As I have already mentioned he did not take to his newsurroundings and tried to “escape” by climbing out of an open window onto the roof. He was “rescued” before he could do much damage to himself.He was admitted to theverpleeghuistwo weeks later and died there inDecember 1987, one month after a stroke.

The social worker’s report reveals a complex relationship between Mr.Rijder’s family and the medical network. Institutional attention is notrestricted to Mr. Rijder alone but is directed to his family as well. Thus theinitial solution offered by social worker – home help and regular visits bythe district nurse – clearly involves the family in its professional problemsolving apparatus. Mr. Rijder’s condition is measured against a behaviouralnorm based on an ideal of communicative interaction – in this case inter-action within the family. But more than this, the relationship between theinstitution and the family also has a custodial aspect. The medical institu-

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tion operates with a certain norm of conjugality that is appropriate to thenuclear family model. Not only does this have a decisive influence on thefunctioning of its problem solving mechanism, but this also enables it toimpose this norm on family structures. For instance, the social worker’sdecision to allow Mr. Rijder a trial period in theverpleeghuiswas influ-enced to some extent by her concern about the welfare of his son’s nuclearfamily, which she thought Mrs. Rijder’s frequent appeals for help mightjeopardize.

The medical institution has an influence that is far wider than a formalarticulation of its role and function would admit. The hegemonic influ-ence of public welfare institutions on private domains like the family havebeen well documented. Donzelot (1980) and De Swaan (1988, 1990), bothspeaking specifically of Europe, have demonstrated how state sponsoredinstitutions are associated with modes of governmentality and help to formcollusive relationships between the state and the family.10

In contrast to the perspective discussed above my ethnography shows amore nuanced relationship betwen the family and the medical institution.To recapitulate, we have seen that Mrs. Rijder refused to accept the socialworker’s first solution, that is, home help and regular visits from the districtnurse. Was she not thereby also rejecting the professional articulation ofthe problem – that it was located in the domestic situation rather than inMr. Rijder’s condition? Thus, there seems to be some scope, at least, forthe exercise of volition in the family’s relationship with the administrativestructure of the state, in this case the medical institution.

THE ADMISSION PROCESS: THE FAMILY’S DISCOURSE

Against the backdrop of Mr. Rijder’s institutional trajectory we nowexamine one phase of it in greater detail. Practices associated with entranceand exit have a privileged place in the sociology of organizations (seeGoffman 1961). They mark off the boundaries of organizations in aphenomenological sense, by making corporeal the special style of orga-nizational practice.11 In this section we examine Mr. Rijder’s admissionto the verpleeghuis. Through the process of admission we see not onlyhow the institution marks its identity on Mr. Rijder’s body but also how itframes his relationship with his wife. The period of Mr. Rijder’s admissionto theverpleeghuiscoincided with my entry into the field, when I was ableto get to know Mr. Rijder and his wife and follow the social worker as sheinitiated each step in the process of Mr. Rijder’s institutionalization.


At the time when I got to know the family, Mrs. Rijder had just returnedfrom a week’s vacation to be confronted with a husband whom she felt shecould not recognize.

“Is this my husband? I don’t know him anymore!” she told the socialworker when we visited her at home. She said that she had got her husbandback with a broken arm (‘bruised,’ the social worker gently corrected) anda swollen ankle. She had put vinegar on it and the swelling had gone downby the next day (subtly implying that nothing had been done for it on theward).

The social worker explained, addressing Mr. Rijder (who was present,together with his son and daughter-in-law), “You wouldn’t eat, youwouldn’t go to bed.” Then she said to his wife, “He has lost a lot of weight.He was so upset that the nurses thought it better not to disturb him withanything but that which was strictly necessary.”

“And,” Mrs. Rijder continued, “they have lost the lower set of hisdentures. They were new and had cost five hundred guilders. I don’t knowif I can have him admitted permanently after the way he reacted to theadmission. I can’t get him to talk about his trip on the roof.”

“Well he told me that he just felt like sitting on it,” the social workersaid. “We used to have coffee together – you remember Mr. Rijder?” Sheaddressed him. “Oh yes,” he replied, “but that was a long time ago.” “Heremembers thedagopvang,” she said to Mrs Rijder. “But will you comeand drink coffee with me again,” she asked, “at my office?” “Of course,” hereplied with an attempt at nonchalance, “Why not?” His wife, as if seekingconfirmation for his contrariness, said, “See, now listen to him. He soundsso reasonable and yet I can’t get him to go to thedagbehandeling!”

A few days later the whole family visited theverpleeghuis. We drankcoffee in the residents’ cafe, and the social worker bought some chocolatesfor Mr. Rijder which she said that she had promised him. Mr. Rijder openedthe packet and gallantly offered them to the ladies – the social worker,his daughter-in-law and myself. He then took one himself, stopped in theprocess of taking it to his mouth, remembered that he had left his wifeout, and offered it to her instead. She refused saying that she would notaccept it from his hand. As his confusion increased, he offered her first theempty packet and then after some prodding the silver foil that containedthe chocolates. His attempted escape was discussed and it was decided thathe had forgotten all about it.

(He replied with a non-committal “Oh Yes?” – half question, half agree-ment whenever he was addressed and kept a tentative smile on his face.“He smells danger and is quiet!” the social worker said later.)

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Mrs. Rijder complained about the difficulty she had in keeping herhusband properly dressed. Pointing to his chin, she said, “Look, he hasn’tshaved himself properly.” “The razer is bad,” he replied. “Oh yes,” saidhis wife sarcastically, “Just bought it.” “A case of little Jan saying thathe couldn’t swim because his swimming trunks don’t fit,” said the socialworker laughing.

To get back to theverpleeghuis, the family decided to go on a tourof the place leaving Mr. Rijder with me in the cafe. “Tell her the storiesof the Gele Rijders,” the social worker said to him in parting, “teach hersome Dutch words, but mind only decent ones!” He laughed. (The ‘GeleRijders’ or ‘Yellow Riders’ was the name of the cavalry regiment in whichMr. Rijder had once served. Interestingly, in my first months of field workand even later I had a sort of kinship with the patients. They did not seeme as a member of the staff, not only because of my strange appearancebut also because they saw me sharing some of their own difficulties – the‘word finding disturbance’ to name just one.)

Mr. Rijder mimed the movement of a horse galloping and said, “I waswith them for seven years. But all that is over. There comes a time when ithas to be given up.” Mr. Rijder began to get restless – he looked aroundand then explained that he was looking to see if there were people heknew. He pulled at the knot of his tie and said that it was hot. After awhile he gave up all pretence at nonchalance and gave in to his panic.We walked up and down the cafe and the lobby while he searched for hisfamily. He would stop in the middle of his wanderings to greet people –attempting to give the search the appearance of a stroll. His wife clickedher tongue disapprovingly when she saw him without his tie and jacketon but triumphantly held out the dentures that she had retrieved from theward. “A likely pair,” she said, “we will try them on. But we must cleanthem first.”

A few days later when the social worker phoned to say that there wasa place on the ward where her husband had formerly spent a week Mrs.Rijder went into a state of panic. “It is a very difficult decision to take,” thesocial worker told me. “It is as if she is a widow and yet not one.”

She repeated this to Mrs. Rijder on the following visit, “The period ofmourning has begun for you already.” Mrs. Rijder agreed, “I might justas well take him to the church yard,” she said. Downstairs, so that Mr.Rijder would not overhear, Mrs. Rijder and the social worker discussedstrategies for conveying Mr. Rijder to theverpleeghuis. Many dementedpatients sense the finality of this journey and resist it in every way theycan. Given Mr. Rijder’s antipathy to theverpleeghuisthey thought it bestto use deception so as not to aggravate him. It was decided that only an


overnight bag with his pyjamas (and one pair of underwear, Mrs. Rijdercouldn’t resist adding) would be brought with him so that he would not besuspicious. The social worker also advised her not to come but to allow theson and daughter-in-law to bring Mr. Rijder to theverpleeghuis. She feltthat Mrs. Rijder would get too upset by the admission process.

She did come, however, accompanied by her son and daughter-in-law.The social worker invited us for coffee and we proceeded to go upstairsto the ward. Mr. Rijder with a pretence at making himself comfortablesaid, “So here we are again, hé, hé,” and gave a forced laugh while hiseyes roved around the room. We were seated in one of the living roomsat the ward. A nurse brought us coffee and introduced herself. “This is allfamiliar to you Mr. Rijder. You already know me,” she said. The son said,“Pa likes it here. Don’t you Pa? There is so much space here. When hecame to my house for dinner yesterday he called it arot hokje (crampedhole).”

The nurse explained about the pocket money that he was allowed toreceive and gave Mrs. Rijder a clothes list. She said that they could nottake responsibility for the loss of his spectacles and his dentures. Howeverboth would be engraved with his name.12 While the nurse talked to Mrs.Rijder, Mr. Rijder made babbling noises to his grandson (a toddler). Heknew that the discussion was about him but could not follow it.

The social worker tried to draw him into the conversation, “Do you havetwo pairs of spectacles Mr. Rijder?” He looked confused, as if he could notunderstand the reason for the question. “I don’t need two pairs. I wear justone pair all the time,” he said.

He fumbled in his pockets and finally brought out a packet of tobacco,nudged his wife, who rolled a cigarette for him. The nurse murmured thathe had been able to that by himself when she last saw him. They agreedthat he had deteriorated since then.

“I can also roll cigarettes,” the nurse said reassuringly to Mr. Rijder.Mrs. Rijder asked her how the dentures had been found, but the nurse hadbeen on holiday then and said that she did not know.

In an effort to distract him the social worker and I took Mr. Rijder tothe recreational activities room next to the ward, leaving the family to talkwith the nurse. He made an effort to greet the faces that he recognised. Butafter a few minutes he began to shift in his seat.

“Aren’t the others coming? Shouldn’t we go and look for them?” heasked.

The social worker said soothingly, “They will come presently. They aretalking to the sister and looking at your room.”

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After a while he said that he would go and see what they are doingand wandered off. He was brought back by a nurse who asked him if hewanted coffee. He hesitated, looking at the social worker, waiting for herto say that he had already had some, but when she did not he said “Nau!”again an indefinite answer.

The nurse brought a fresh pot of coffee. But after two sips he got up,“It is very hot, I will go and look for the others,” he said. The nurse said,“Why don’t you take off your jacket if you are feeling hot. Sit and drinkyour coffee, I got a fresh pot specially for you.” He took off his jacketand loosened his tie. But after a while he got up. He was past listening tothe nurse who tried to detain him. “I want to walk, I must look for them,”he said. “Look for whom?” the nurse asked. He didn’t seem to be ableto say “My family,” just “them.” He was trembling by then. The socialworker asked where the family was in an undertone. The nurse said thatMrs. Rijder had gone but that the son and daughter-in-law were still here.Another nurse came up to say that they had all gone. They did not want tosay good bye to him. The two nurses and the social worker looked grave.

We all left the activities room together. Mr. Rijder was walking towardsus from the coridor. He asked the social worker where ‘they’ had gone.“Gone home,” she replied. He asked again – it had not registered with him.She said again, “They have gone home.” He looked surprised and then saidto me – “Will you walk?”

We walked down the corridors of the ward. At each window he wouldstop, test the frame with his hand to see if he could open it, and look out.Then he would say, “Not this one. And not this one either.” He had notforgotten his attempted escape after all. We went back to the living roomwhere the social worker sat waiting for us. “Can you take me home? I haveto go home. I have nothing here,” he said pointing to his clothes. The socialworker said that he had to stay here and have his supper, that his wife hadgone to their son’s house and was already asleep. “I must go home on thebicycle then,” he said, “You have a car. Will you take me home?” “I haveto stay here as well,” she said. “I must get out,” he said. “You can’t,” I said.“Don’t say that!” he said sharply.

Then it dawned on him that he had been left – abandoned – and with thelucidity brought on by rage, he said that they had brought him here onlyto leave him. His statements were no longer hesitant half sentences butwere clear and decisive. He was no longer worried about making a goodimpression, no longer unsure. The nurse flopped down in a chair next tothe social worker. She said in an impassioned undertone, looking at Mr.Rijder who was standing in the corridor near us, “The family has just lefthim to us. They think that they have borne enough just in the taking of


the decision. It’s the worst thing they could have done – admitting him inthis way, leaving without saying goodbye. It is bad for him and bad for us.There is nothing that we can do for him now.”

Mr. Rijder broke in suddenly, “They shouldn’t have done it like this.”“How then?” asked the nurse breaking off the undertone. He did not reply.There were other patients walking around, busy in their own worlds. Onelaughed at this moment to herself, but it meshed strangely with the scenethat was being enacted.

The social worker said comfortingly to Mr. Rijder, “They will cometomorrow.” “Oh yes?” he asked bitterly.

I saw him the next day again. It was the same – the endless walking,the search. He tried the door again and again. A fellow patient, a womanwho had been walking purposively around the ward said, “He is walkingtowards his wife.”

Every time the door opened he would walk towards it saying, “I willtry it once again.” Yet every time a white-coated figure passed by he wouldpause, raise a finger to his lips and turning to me he would say, “The boss!”,as if we were two conspirators.

With Mr. Rijder’s admission to theverpleeghuiswe come to the endof one part of Mrs. Rijder’s story. To put it in her own words, “I used tobe busy with him all the time, but now the rooms are empty.” For her theprocess of leave taking begins, for the world of theverpleeghuisis not herworld. It is the unspoken acknowledgement of this perhaps that preventedher from taking formal leave of her husband. The disjunction that takesplace in her story, the loss of signification that results from her husband’sremoval from her orbit, is expressed as is so much else in her narrativethrough the metaphor of clothes. In this period she often complained tothe social worker about the way in which her husband was dressed bythe nurses. At one time, she said that she had admired his jersey. It wasstolen, he had said, but the authorities did not know this. She described thecontents of his pockets – a post card with a bit of scotch-tape still on it thathe had probably plucked from the wall, a spoon and so on. “He has gonefar away from the man that you knew,” the social worker told her.

It is fitting that it is only Mr. Rijder, the victim in this constellation ofcircumstances, a demented man no longer responsible for his actions, whodares give direct expression to the anonymity he has been reduced to as aresult of the loss of his meaningful world. His pockets filled with a jumbleof objects, his clothes – not his own but stolen – all seem to point to this.We see a directness that cuts through the sometimes clichéd formulationsof the other participants in this narrative. It is, as Goffman says, only in

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a mental institution that a person can finally indulge in the “amoral art ofshamelessness” – a freedom in a certain sense.13

THE CASE CONFERENCE: MR. RIJDER’S FILE SELF

We shall now move to the discourse of the institution. What is the stylein which it renders Mr. Rijder as a communicable entity? When we movefrom the discourse of Mrs. Rijder to that of the institution we move from adiscourse that is elaborately signifying, descriptive and particular to onethat is systematizing, quantifying and general. Some indication of theenormous gulf that separates the two discourses has already been givenin the admission procedure. Let us recapitulate using just one example –the motif of the dentures that reappear several times in the narrative. Theirloss and manner of recovery serve to condense the disjunction between thetwo discourses. Consider their loss during Mr. Rijder’s vacation admission.They are an indispensable element in maintaining the facade of continuitybetween Mr. Rijder as normal, as the husband of Mrs. Rijder, and Mr.Rijder as a patient suffering from dementia. The dentures that are found tofit him are not specifically his own. Mrs. Rijder acknowledges this dispos-session. Before he tries them on, she says that she will have to clean themproperly. It is her way of wiping out all signs of the institution that lingeron her husband.14

On the one hand theverpleeghuisis conscious of its responsibilityin providing a substitute for the home. Efforts are made to preserve thefacade of normal living by decorating the living rooms in the wards in ahomelike manner, by dressing the patients or rather ‘residents’ in streetclothes and not in bed clothes, and by encouraging them to move out ofthe wards during the day time. By its repeated emphasis on treating the‘whole person’ it opposes itself to the impersonality of the hospital. Buton the other hand it is an organization based on a work routine which usesthe principle that the care givers are substitutable, because the activity ofcare is a function that can be separated from the persons performing it.

Mrs. Rijder was also a nurse to her husband in the last few years, but herconcerns were significantly different. Mr. Rijder was her husband and nother patient. The nurses in theverpleeghuisdo build up relationships withpatients, even emotional ones, but given the fact that they are professionals,a certain detachment is sought to be maintained.

Like all organizations, theverpleeghuispresupposes a certain perspec-tive on the individual – a somewhat behaviouristic one. Thus, the goal of“giving the incurably sick person the chance of living with that sicknessand conducting himself as a human being” (Regina Pacis 1980: 2) becomes


a systematic classification of the person in terms of his or her ‘functions’.These ‘functions’ range from ‘contact functions’, that is sight, hearing andspeech, to the ones concerned with nursing – ‘the activities of daily life’(ADL) which are supposed to be intimately concerned with the identityand personhood of the individual. The breakdown of a person into his orher ‘functions’ enables him or her to be evaluated in quantifiable terms.The case conference that is described below is one such attempt. It movesfrom the language of experience to the language of numbers.

The case conference is a discussion of the various reports presented bythe ‘specialists’ concerned with the different aspects of Mr. Rijder’s case.Together they constitute what we could call his “file self” (Harre 1984). Inthis section I show how the file self is constituted discursively. To this end Imove between the written reports themselves and the discussions that takeplace around them. I shall try as far as possible to indicate the discussionwith brackets.

Mr. Rijder’s case conference began with the nursing report: “Is knownfrom the vacation admission. His wife could not manage at home. Walksthe whole day – in search of what? But is calm.”

(The nurse reading the report broke in to say that they accepted morefrom him now. They only did what was strictly necessary and left the rest.“He tries to hide what he can no longer do,” she added.15)

“The unrest begins at night. Pushes the furniture around sometimes andshouts even though there seems to be nothing the matter.” (“Is it panic?”the doctor asked. “I think so,” the nurse replied. “If you try to do somethingthat he doesn’t understand.”)

“Spent one night in the unrest belt, had terrible stomach cramps. Atten-tion is now being paid to his defecation problem. He has slept well the lastfew nights.”

“ADL – varies from day to day. Helps, but independent washing anddressing is not a success.” (The doctor who was chairing the meeting askedfor the ADL scores). The nurse said, “Dressing – he helps by giving youhis arm when asked and things like that. But if you put his clothes out andleave him to dress alone he doesn’t know what to do.” “Therefore he getsa two for dressing,” said the doctor. “Washing and bathing – a one becausehe needs complete help. At the most he can dry his face. Toilet – also atwo, because even though he can walk to it and support himself, he hasto be taken there by force. Eating a three – he feeds himself but has tobe told regularly which his spoon is and which his napkin. He has to bestimulated constantly which he finds irritating. Continence – two or three– he is incontinent at night.”

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(The doctor, “Is this because he doesn’t know the way to the toilet?”The social worker: “He was incontinent at home as well – at night.”)

Nurse: “He has no problems as far as physiotherapy is concerned – hegets a five for both walking and standing. He has fallen once but that waswhen he slipped on his own urine.”16

The social worker took over from the nurse. Her report was verbal. “Hewas at thedagopvangfor a long time. Then in thedagbehandelingsinceApril this year. His wife had asked for admission six months ago but Ididn’t think it right at that time. But we did take him as a vacation admis-sion. He has been deteriorating for five years at least but his complaintsonly began in February. There are serious errors.”

The doctor asked, “Is it because of disturbance in comprehension?”“Yes,” the social worker replied. And then the behaviour problem – itcomes by suggestion from her, “I think that in their marriage he has alwaysgiven way to her.” The doctor: “Coercive?”

The social worker: “Um, I never found actual aggression on his partbut it is certainly a problem situation. The tension at home increases thedementia.”

The nurse: “He doesn’t understand why he is here. He is angry withhis wife. She left him here without any explanation. Sometimes he isvery affectionate, he points to her when she comes and says, ‘That is mymother’. But even now when she leaves we have to distract him so thatshe can slip away unnoticed. Even now she does not take leave from himwhen she goes.” The social worker said, “That’s why she makes such afuss about his health and his clothes – it comes from a feeling of guilt.”

Then doctor read out Mr. Rijder’s medical history. (I give the pointsjotted down by the social worker.) “False eye – the result of an accident,cataract in the other eye. Medial menisectomy. Liver function not optimal.Stomach problem – defecation. Tibiostomy.”

This was followed by the psychologist’s report: “Amnesic image withmassive cognitive disturbance – time, place and person disturbance. Hidesdeterioration. Laugh – aggression. Language outlet not adequate. Verbalinstructions work badly with him.” (Again, these are the points noted bythe social worker in her file.)

The doctor asked, “Does he also have problems of his own or does heonly give us problems?” The nurse said, “I don’t know – not really – onlythat walking up and down. But at night the less force you use the better itis and if the attention comes from only one or two persons.”

The doctor: “And his room?” The nurse replied, “Yes, he has structureda corner for himself there with a photograph of him on a horse, but hedoesn’t use it during the day. When we ask him if that is him he says yes


but he hasn’t come around to telling us stories about his days in the cavalryas yet.”

The doctor asked, “Do we have any books on horses in the library? Seeif you can get any contact with him through horses.” This was duly notedunder the heading, ‘recreational therapy’ (aktiviteiten begeleiding).

The doctor then brought the case conference to a close.Conclusion: Senile Dementia Alzheimer’s Type. In the last months

progressive. Problem: Unrest: Limiting the number of persons with whomhe has to interact.

Mr. Rijder, as an object of knowledge and as an institutionally definedproblem is divided up into different functions that are to be handled byspecialists. These functions are thought to be coordinated by the ‘team’approach so that the patient can be reconfigured as a ‘whole person’. Thismay be so but it also results in his splintering into these various sections ofwhich the whole can only be reconstituted as a definition. This is whatthe case conference does. It re-constitutes him as a conclusion ‘SenileDementia Alzheimer’s Type’.

The case conference at one level appears to be part of a complex of“accounting practices” (Garfinkel 1984) by which bureaucratic institu-tions describe their own activities to themselves. In the process they mayeven contribute to diminishing the patient’s subjectivity.17 But behind thebureaucratic style more appropriate to a case file than to a discussion wehear the voices of persons engaged with Mr. Rijder in everyday inter-action. The doctor’s, for instance. “Does he have problems or does heonly give us problems.” There is an interweaving of different styles –the evaluative, enumerative style of record keeping, with a more personal,conversational style. The nurse, more than the other professionals, breaksinto personal anecdotes. Take the ADL scores, for instance. Even thoughthey are reported by the nurse at the insistence of the doctor presiding overthe meeting, it seems to be for form’s sake, so as to conform to the ritual ofstandardization, for record keeping rather than for the personal interactionthat the everyday practice of care involves.

In the previous section I spoke of the two different styles of care thatare brought face-to-face in the admission process – the singularity of carewithin the family and the impersonality of institutional care. Even thoughthe care givers in theverpleeghuisare confronted with the essential human-ness of the persons whom their routine practices transform into objectsto be managed, they are not answerable to them as Mrs. Rijder is to herhusband. The institution’s responsibility is a collective one. Both patientsand care givers can be thought of as generalizable categories. The personswithin these categories are substitutable. But this is not the case with Mrs.

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Rijder vis-à-vis her husband. Her responsibility for him cannot be trans-ferred to another, nor can it be confined to a certain context. It is in a senseboundless, unequal to itself (see Derrida 1995). She cannot be responsibleenough and therefore stands accused before him. Her sense of guilt regard-ing his institutionalization, stems from this boundless responsibility. Theseemotions reveal the hidden dimension of their relationship – the quality ofintimacy that transcends the normative regulation of the marital bond.

Marriage, as Simmel says, is a supra-individual relationship. Unlike adyadic relationship in which the persons involved are oriented solely toeach other, the relationship of marriage looks outward. It is oriented to athird element – to a child perhaps or to an institutional arrangement thatmakes it a formal social bond. Yet the modern, monogamous marriage alsocontains the seeds of a dyadic relationship. The exclusive orientation to aunique other, the dependence of the dyad on its two members, colours theidentity of this relationship. More than any other form of sociation, Simmelsays, the dyad carries the seed of its own termination, because the deathof one of its members causes the death of the relationship itself. Thus, thelives of the individuals, their mutual orientation to each other is colouredby the imagination of death and this transforms the relationship itself (seeWolff 1950). This is why Mrs. Rijder’s responsibility towards her husbandcannot be shared by any third person, not even their son.18

In some strange way the institution’s intervention into their conjugalrelationship enhances its dyadic dimension. Luhmann (1982) has shownhow face-to-face interaction, once it is freed from its normative societalfunction, can take on an enhanced capacity for intimacy and awareness ofthe other. Could one say that once Mrs. Rijder is freed from the responsi-bility of Mr. Rijder’s physical care there is scope for a return to intimacyunburdened by the trivial tensions of day-to-day interaction? Or is it freedby the awareness of the imminant dissolution of their relationship, anawareness that accompanies Mr. Rijder’s institutionalization?

I remember meeting Mrs. Rijder a month and a half after her husband’sadmission to theverpleeghuis. “He called me ‘Mien’ today,” she said, herface glowing. “He hasn’t called me that since we were first married. Hesaid that I looked beautiful.” Ten days later Mr. Rijder had a stroke.

Time, Death and Personal Identity

Mr. Rijder’s life in theverpleeghuisconforms to a typical trajectory: resis-tance→ adaptation→ death. Each of these phases is marked on his body,incarnated in the emotions called forth by the changing nexus of socialrelationships. His initial unease during the home visits that was expressedthrough his hesitant speech and passive bearing changed to an acute clarity


brought on by anguish as the fact of his incarceration dawned on him. Theperiod of stability that followed the phase of resistance ended abruptly withhis stroke. Paradoxically, it was in this phase that he was most accessibleto his family. His passivity made him more open to the forms of care thatthey were able to give him in theverpleeghuis. His wife was able to relateto him in the role of care giver, one that she had carved out for herself inthe last years of his illness. In the initial phase of resistance Mr. Rijderstood alone, with his back to both theverpleeghuisand his family. Thiswas also the period when he was most accessible to me. We were bothstrangers, set apart from the common concern that drew his family andthe institution together. For me, it is the brief period of stability, whenhe seemed to be adjusting to his life in theverpleeghuis, that is the mostellusive. Husband and wife could turn to each other once again but thatmeant excluding others from their relationship. But this new relationshipthat they were forging with each other ended with Mr. Rijder’s stroke andhis death followed one month later. What were the reactions to his death?Mr. Rijder’s doctor told me that the cessation of resistance signalled hisdeath. Resistance had been his signature on life, the doctor said. Withoutit he lost the will to live. The doctor interpreted Mr. Rijder’s stroke as asign of accommodation to theverpleeghuis– a state of being that couldonly lead to further deterioration. Perhaps a premonition of this lay behindthe social worker’s initial reluctance to admit him to theverpleeghuis. ForMrs. Rijder, her husband’s death helped to stabilize the contours of theirrelationship, excluding from it all signs of the institution’s presence. Thesocial worker and I visited her after Mr. Rijder’s death. She had shiftedto a house with a garden. She talked about his death and her grief, butwas silent about the period in theverpleeghuis. She showed us around thehouse. As if to make up for the lack of signification of the institutionalperiod, there was an over abundance of signification now, so that practi-cally everything in the house became a motif in the narrative of the pastthat she was building up for us. It is only through these motifs – the chairthat he sat on and which she had placed in such a way that people wouldnot sit on it; the plastic bath tub in which she used to bathe him and whichshe said she could not bare to throw away – that she addressed the period ofhis illness. They provided the link between his absence and her presence,his past and her present. Only with his death did Mrs Rijder recogniseher husband as a temporal being. The period of Mr. Rijder’s institution-alization was a limbo period for her. Unlike normal time, that is, time asprogression, as development, time within theverpleeghuisis constituted asdeterioration. Since demented persons have, at best, a fractured relation-ship with their past and their future promises only further incapacity it is

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the present that is privileged in theverpleeghuis. For Mrs. Rijder there wasa continuity between the past she shared with her husband and his presentdisability. Thus his physical appearance, the facade that he presented wasvery important to her because it helped to maintain a sense of temporalcontinuity. This was broken after his admission to theverpleeghuisandinterestingly Mrs. Rijder’s anguish at this disruption was expressed inthe form of angry complaints about his clothes and his altered physicalappearance.

For theverpleeghuishis past existed in the form of his medical history,his “file self” (Harre 1984). In its practice his ‘personal’ past existed onlyas fragmentary motifs that could be used to achieve some contact with him.But in a sense Mr. Rijder no longer had a past, he had no biography. Theinstitution made him anew, sans bio-sketch. It is in this light that we musttake his statement when asked to recount his experiences with theGeleRijders. “That is over,” he said.

CONCLUSION

The very real possibility of appropriating the voice may keep perceptivescholars like Gubrium (1992) from addressing the subjectivity of dementiasufferers. For me, however it seems crucial for a sociologically orientedtheory of the self. Theorists like Mead (1934) and Schutz (1970) showus how the self can be understood as an intersubjective project. Thus, asMead has argued, the self is formed by the internalization of a conversationof gestures with the other such that the self responds to its own actions interms of its anticipation of the responses of the other.

But for Mead the intersubjective process of self formation is essentiallycognitive – not in the sense of a recognition of a law or of a universalprinciple but rather as a set of bodily dispositions which constitute theseanticipatory structures of meaning. Thus, intersubjectivity assumes inter-corporeality. Access to the other’s subjectivity as a set of stable disposition,relating to the environment.

But in spite of the central place given to the body in the articula-tion of the theory of intersubjectivity there is a curious silence about thenature of the body involved. Bodily intentionality assumes a certain normregarding locomotion, object manipulation and communication. Bodies areviewed in terms of their revelatory capacity, allowing for a reciprocity ofperspectives between actors in interactive situations based on the assump-tion that their bodily experiences are similar and therefore transparent (seeSchutz 1970). But what if the other’s body is not transparent? What if it


is diseased, disabled, and inexpressive according to our norms of bodilydisposition? Is corporeal opaqueness then the limit of intersubjectivity?

In a concise summary of his theory of communicative rationality,Habermas (1991) says that intersubjectivity assumes a ‘differacted under-standing’: “[It] allows the divergence within the successfully achievedconsensual agreement itself, of individually nuanced thoughts and feel-ings” (1991: 217). Thus intersubjective socialization simultaneouslyassumes individuation. Self and other share a relationship of exchangemade possible by the symmetrical relationship between their bodies.

Is intersubjectivity possible when this relationship is asymetrical, whenfor instance it is based on dependency? I argue that it is if one considers thefact of corporeality not merely in terms of individuation and bodily inten-tionality but also as an acknowledgement of vulnerability. Dependency andcare involve a notion of intersubjectivity that is based on alterity – a radicaldissociation between self and other exemplified best in the face-to-facerelationship (see Levinas 1989). The revelatory capacity of the body islinked as much to the recognition of the face of the other as it is to thepower of sentience. It is through the face of the other that one recognizesthe other’s corporeality and is made accountable for it.

Habermas’s theory of intersubjectivity places too great an emphasis oncommunication as exchange, an exchange that assumes that self and othermust have a commonality of being. For without this they would not sharethe same language and would be unable to understand each other. The priv-ileged domain for the emergence of voice is the face-to-face relationshipas the acknowledgement of the other’s face is the recognition of his or hervoice. But communication has another aspect as well. It is expressive andtherefore oriented to someone. Language as a mode of communication hasthe quality of appeal. It becomes ‘voice’. As voices we engage with oneanother, wanting to be heard, seeking acknowledgement. It is as voice thatthe self reaches out to the uniqueness of the other’s being.

Face-to-face relationships emerge in the ward through the work of care.Care givers strive to relate intersubjectively with patients, to achieve aworld of shared meaning. But at the same time they also fear that toogreat an empathy with patients may lead to an appropriation of voice, thatcommunicative interaction may lead to the extraction of meaning fromtheir speech. Thus, theverpleeghuis’sconcern for the patient’s subjectivityparadoxically also involves a recognition of a certain limit. Care giversare conscious of patients’ privacy, of the fact that they must be treated asautonomous beings.

Their professional code prevents them from responding uncondition-ally to the patients’ appeal. And the pathos of the care relationship in the

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verpleeghuislies precisely in this – the knowledge that the only voice leftfor patients is that of resistance which for Mr. Rijder at least becomesone phase in a trajectory that culminates in his death. But other than theethical dimension of the professional care relationship that limits the scopeof intersubjective accessibility, care in theverpleeghuisis routinized. It isorganized according to the principles of substitutability and specializedexchange in which care givers and patients are viewed as roles and not aspersons.

However, there is another register on which the care relationshipexpresses itself in this paper. The relationship between Mrs. Rijder and herhusband is expressed through the day-to-day work of care. Even thoughat the time when I knew the Rijders this work had become a burdensomeobligation, the fact that it connotes other values is clear from the sense ofloss that Mrs. Rijder experiences when she is freed from it. How is thisroutine of care different from the one institutionalized in theverpleeghuis?Primarily by being based on a principle of intimacy and mutuality ratherthan on an impersonal bureaucratic rationality. This is not the intimacy ofromance that was described in a previous section but rather an intimacyof devotion that emerges from everyday life. Mrs. Rijder relates to herhusband through the daily routine of care. Her acknowledgement of theirrelationship is expressed through an acceptance of its repetitiveness. Cavellhas called it “a devotion to repetition in dailyness” (see Cavell 1996).

Deleuze (1994) says that repetition is conduct towards that which isunique and therefore has no equivalent. He contrasts this with the gener-ality of exchange. Exchange occurs between terms that resemble eachother and are therefore substitutable. Repetition however orients itself tothe singular, the irreplaceble, that which can recur only by repeating itself.

For Mrs. Rijder her husband lives on, even when he is dead for theverpleeghuis, through the objects that mediated the care relationship –through the plastic bathtub in which she bathed him, through his chairand his clothes. These objects become witnesses to their conjugality. Theygive expression to an intersubjectivity based not on knowledge through theintellect but knowledge through the spirit (see Das 1996). Mrs. Rijder’srelationship with her husband is different from the face-to-face relation-ships that exist in the institution in that it knows no limit. The professionalcare relationship must accept a certain boundedness as its normative foun-dation. The autonomy of the client (patient) is the ethical premise on whichthis relationship is based. It is precisely this respect for the patient’s self-hood that becomes a barrier in the acknowledgement of his or her suffering.It is not the denial of personhood, nor a refusal to recognize the uniqueness


of the patient’s being, but rather a fear of stealing the voice that results ina certain inability to hear the patient’s appeal.

Elizabeth Herskovits (1995) in an article on the subjectivity ofAlzheimer’s Disease patients summarizes the recent debates on this issue.Discussions about the self identity of such patients range from doubts overits existence in the face of the massive cognitive deficits that Alzheimer’sDisease brings to its radical reconfiguration in terms of an intersubjectiveproject. As she argues, the debates about the self and the possibility ofsubjective experience among persons with Alzheimer’s Disease may throwup questions about the very nature of selfhood, about the way in which itis anchored in our interpersonal lives and about the forms of embodimentthat it may take. Similarly, the issue of giving voice to dementia sufferersmay throw up questions regarding the possibility of communication itself– questions about the relationship between language and meaning and ofillness as voice when other possibilities of speech are silenced.

NOTES

1. In the Netherlands, theverpleeghuis(nursing home) has had a development that iscomplementary to the particular form that the general hospital (algemeen ziekenhuis)has taken in recent years. The general hospital has become an institution that offersvery specialized services. It treats acute disease and is organized on the basis of anideology of cure. Patients suffering from chronic and long term illnesses who requireintensive nursing and revalidation rather than specialized medical services are usuallysent toverpleeghuizen. Thus theverpleeghuishas evolved a model of medicine thatemphasizes care rather than cure. Although, it was not expressly planned in this way,verpleeghuispatients are largely old people. Regina Pacis is, what is known as a‘combination’ (gecombineerd) verpleeghuis, that is, it has wards both for somatic aswell as psychogeriatric patients as well as a small day treatment (dagbehandeling)section for psychogeriatic patients.

An early version of this paper was presented at the Anthropological and Sociolog-ical Centre of the University of Amsterdam in 1987. Since then it has gone throughseveral revisions and many people have contributed to it. I would like to thank CornelieMous, Jan Diekema and Jeroen Fokke for making me conscious about the mode bywhich theverpleeghuiscould be represented; Deepak Mehta and Surabhi Tandon forhaving patiently read through the many drafts that I have written; and Lawrence Cohenand K.W. van der Veen for sharing their thoughts on the subject with me. Finally, Iowe a special debt of gratitude to Veena Das and Arthur Kleinman – their detailedcomments helped give this paper the shape that it has.

2. Following Kleinman (1988) I have tried to embed Mr. Rijder’s story in a local moralworld – to understand what is at stake for those who give the story the particular formthat it has. The local moral world mediates between culture and the individual actor,articulating the domain of interpersonal experience.

3. Habermas (1987) says that the life world, the domain of intersubjectivity and sharedvalues, can be colonized by modern bureaucratic systems. Even though he speaks

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largely about money and the media as agents of alienation, scholars like de Swaan(1988, 1990) extend this role to medicine as well. De Swaan says that the medicalregime transforms care, traditionally located within the family, into a professionalservice relationship.

4. Gubrium (1992) is a rare exception. He applies Mead’s conception of the mind asa social process to understand the experience of Alzheimer’s Disease. He speaks of‘minding’ as an open dialogue between case givers and their patients, through whichthe ‘reality status’ of the latters’ minds are problematized.

5. Henri Ey, for instance, describes the self of a demented person as being “radicallyvitiated in its judgement.” There is “. . . a loss of self criticism, a foolish indifference tological and moral values, a lack of importance attached to one’s acts, speech and ideas.Because of this the demented person is profoundly alienated in his personality to theextent that, in its extreme state, there is neither world nor anyone; in any case there isno problematic of existence” (1978: 225).

6. I take the term career from Goffman (1961). It mediates between an inner domainthat pertains to self identity and an outer world that is molded by institutions andbureaucratic organizations. Similarly the word total is used in connection with suchinstitutions to characterize their encompassing quality, as Goffman has elaborated.

7. Apraxia, the inability to make skilled movements, is a disorder of the cerebral cortexresulting in the inability to organize these movements (Harrison 1986).

8. The service network consists of medical and para medical services on the one handand general social services on the other. Nursing homes and hospitals are intramuralor residential medical services. There are also extramural or non-residential medicalservices like neighbourhood nursing care (wijkverpleging) and ambulatory psycho-logical care (Regionale Instelling voor Ambulante Geestelijke Gezondheidszorg). Thegeneral social services that are extramural include housekeeping help (gezinsverzorg-ing) and service centres (diensten centra). These centres mediate between the elderlyperson and the specialist. They serve as centres for the dissemination of informationon subjects like preventative medicine, diet and housing. They also provide facilitieslike libraries, laundrettes, pedicures and warm meals.

9. I am not sure what this means. This is probably the social worker’s interpretationof the dagopvangsupervisor’s report. However, it could be interpreted in the lightof the discussion on the ideal of sociality and the communicative rationality norm.It is significant that the ‘disturbance’ that Mr. Rijder caused is due to his lack ofparticipation in group activities rather than to any overt acts of disruption.

10. Donzelot argues that institutions like hospitals and orphanages in the eighteenthcentury operated on the surface of the state to absorb individuals who were perceivedas undesirable by their families and turn them into productive resources. De Swaanemphasizes the surveillance function of such institutions that serve as organs of stateadminstration. For him the family is in some sense the loser in this relationship –paying for an elaborate system of subsidized care by loss of autonomy.

For a sensitive study of the complex relationship between the order of the familyand the order of the state see Das (1995). She explores this relationship by examiningthe codes of honour and shame, purity and pollution in the context of the Partition riotsof 1947 in India.

11. The term ‘organization’ here refers specifically to theverpleeghuis’ administrativestructure. ‘Institution’, the more inclusive term that I generally use while referring toit, has the added connotation of world view and moral order.


12. According to the regulations laid down by the General Law Regarding ExceptionalSicknesses, the following categories of persons are obliged to make a financialcontribution towards their stay in theverpleeghuis.

Single persons who are eighteen years or older. Married couples of whom bothpartners are admitted in residential institutions. These categories of persons must beginthe payment six months after admission to the residential institution. Psycho-geriatricpatients begin the payment from the time they are admitted to the institution. Thepersonal contribution is on an average a little less than 10% of the income but in nocase does it exceed fl 1,350 per month. An average of more than fl 200 is spent perpatient per day in averpleeghuis. Over and above the personal contribution patientsare expected to keep some pocket money for dry cleaning, shopping for personalaccessories like soap and shampoo, going to the cafe (in theverpleeghuis) and forexcursions (source: Regina Pacis 1980).

13. What does this freedom mean? Goffman (1961), speaking specifically of the mentalpatient, says that s/he has the opportunity to see the contingencies involved in ‘self’construction because the institutional trajectory makes his or her self open to constantchange.

14. There are other occasions when this motif appears – not just the loss of Mr Rijder’sdentures but those of his wife as well. When Mrs. Rijder returned from her holiday,Mr. Rijder took her dentures from her bedside table, as if to tell her not to leave himagain, she said. On another occasion she cracked the lower set of her dentures whenout of anxiety she clenched her jaw too hard. This occurred on her first visit to theverpleeghuisafter Mr. Rijder’s admission. This motif seems to reflect the tension intheir conjugal bond enhanced by his institutionalization – the inevitability of theirseparation and their inability to accept it as final.

15. Mr. Rijder’s response to his new environment is interpreted as a symptom pointing toa behavioural syndrome characterisitic of coping with reduced brain function.

16. The Activities of Daily Life Rating Scales (ADL) are supposed to measure the patient’sability to perform the basic activities that are necessary for his or her well being. Thisscale is used to measure degrees of invalidity. The activities on the scale are as follows:

Bathing/washingClothing oneselfAbility to use the toiletEatingContinenceThe ADL scores are as follows:

1 = no independent activity possible2 = cooperation3 = the patient is able to perform a large part of the activity himself4 = independent with some help with the finishing touches5 = independent with or without mechanical support (e.g.stick)

17. Good (1994) says that even medical discourse, in spite of its claims to the contrary,takes recourse to metaphorical and connotative forms of expression. Taking the exam-ple of the diagnostic procedure, he says that the usual medical understanding ofdiagnosis assumes that language can be used to describe an objective condition.However, the actual procedure may be an attempt to symbolize or to “invoke” theorigins of an ailment and thereby formulate an object of treatment.

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18. The relationship between Mr. Rjider and his son seems to be characterized by a certainunease. The son seemed to be embarassed when confronted with his father’s condition.He never showed a strong emotion in front of the social worker or me. This is incontrast to Mrs. Rijder whose emotions ranged from anger, to anguish, and finally aquiet grief. It could be that some of the son’s awkwardness stemmed from the inter-active situation itself. He was the only male present at our meetings other than Mr.Rijder himself. But whatever the reason may be, it led to his turning away from hisfather’s suffering, to the refusal of a face-to-face relationship. He saw himself merelyas a reluctant intermediary between his parents, never as one who was called forth toface his father and to be accountable to him.

REFERENCES

Cavell, Stanley1994 The Claim of Reason. Wittgenstein, Skepticism, Morality and Tragedy.New York:

Oxford University Press.1996 The Same and Different: The Awful Truth.In S. Mulhall, ed.,The Cavell Reader

(pp. 167–196). Cambridge, MA: Blackwell.Cohen, Lawrence

1994 Old Age: Cultural and Critical Perspectives.Annual Review of Anthropology23:137–158.

1995 Toward an Anthropology of Senility: Anger, Weakness, and Alzheimer’s inBanaras, India.Medical Anthropology Quarterly9(3): 314–334.

Das, Veena1995 Critical Events. An Anthropological Perspective on Contemporary India. Delhi:

Oxford University Press.1996 Language and Body: Transactions in the Construction of Pain.Daedalus125(1):

57–92.De Swaan, Abram

1988 In the Care of the State. Health Care, Education and Welfare in Europe in theModern Era. Oxford: Polity Press.

1990 The Management of Normality. Critical Essays in Health and Welfare. London:Routledge.

Deleuze, Gilles1994 Difference and Repetition. London: The Athlone Press.

Derrida, Jacques1995 The Gift of Death. Chicago: The University of Chicago Press.

Desjarlais, Robert1994 Struggling Along: The Possibilities for Experience Among the Homeless Mentally

Ill. American Anthropologist96(4): 886–901.Donzelot, J.

1980 The Policing of the Families: Welfare versus State. London: Hutchinson.Ey, Henri

1978 Consciousness. A Phenomenological Study of Being Conscious and BecomingConscious. Bloomington: Indiana University Press.

Garfinkel, Harold1984 Studies in Ethnomethodology. Cambridge: Polity Press.


Garro, Linda and Cheryl Mattingly (ed.)1994 Narrative Representations of Illness and Healing. Special Issue ofSocial Science

and Medicine38(6).Goffman, Erving

1961 Asylums: Essays on the Social Life of Mental Patients and Other Inmates. NewYork: Doubleday.

Good, Byron J.1994 Medicine, Rationality and Experience: An Anthropological Perspective. Cam-

bridge: Cambridge University Press.Gubrium, Jaber

1986 Old Timers and Alzheimers: the Descriptive Organization of Senility. Greenwich,CT: JAI.

1992 The Social Preservation of Mind: The Alzheimer’s Disease Experience.In P.Hamilton, ed.,George Herbert Mead. Critical Assessments, Vol. 3 (pp. 222–238).London: Routledge

Habermas, Jurgen1987 The Theory of Communicative Action, Vol. 2. Cambridge: Polity Press.1991 A Reply.In A. Honneth and H. Joas, eds.,Essays on Jurgen Habermas’s The

Theory of Communicative Action(pp. 214–264). Cambridge: Polity Press.Harre, Rom

1984 Personal Being: A Theory of Individual Psychology. Cambridge: Harvard Univer-sity Press.

Harrison, L.M.1986 The Pocket Medical Dictionary. Delhi: CBS.

Herskovits, Elizabeth1995 Struggling Over Subjectivity: Debates about the “Self and Alzheimer’s Disease.”

Medical Anthropology Quarterly9(2): 146–164.Johnson, Colleen Leahy and Frank A. Johnson

1983 A Micro-Analysis of “Senility”: The Responses of the Family and the HealthProfessionals.Culture, Medicine and Psychiatry7: 77–96.

Kitwood, Tom1993 Towards the Reconstruction of an Organic Mental Disorder.In Alan Radley, ed.,

Worlds of Illness. Biographical and Cultural Perspectives on Health and Disease(pp. 143–160). London: Routledge.

Kleinman, Arthur1988 The Illness Narratives: Suffering, Healing and the Human Condition. New York:

Basic Books.Levinas, Emmanuel

1989 Martin Buber and the Theory of Knowledge.In S. Hand, ed.,The Levinas Reader(pp. 59–74). Oxford: Blackwell.

Luhmann, Niklas1982 The Differentiation of Society. New York: Columbia University Press.

Mead, George Herbert1934 Mind, Self and Society. Chicago: University of Chicago Press.

Ricoeur, Paul1978 Imagination in Discourse and in Action.In Anna Teresa Tymicniecka, ed.,The

Human Being in Action. The Irreducible Element in Man. Part II. Investigation atthe Intersection of Philosophy and Psychiatry(pp. 3–22). Dordrecht: D. Reidel.

382 ROMA CHATTERJI

Schutz, Alfred1970 On Phenomenology and Social Relations. Chicago: University of Chicago Press.

Wolff, Kurt W. (ed.)1950 The Sociology of Georg Simmel. Glencoe, IL: The Free Press.

DOCUMENT

Brochure, Regina Pacis. 1980

Address for correspondence:Dr. Roma Chatterji, Department ofSociology, Delhi School of Economics, Delhi University, Delhi – 110007,IndiaFax: 91-11-725-7858; E-mail: [email protected]

an ethnography of dementia

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