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JOURNAL TITLE: Sociology of health & illness

USER JOURNAL TITLE: Sociology of Health & Illness

ARTICLE TITLE: Structuring and Destructuring the Course of Illness: The Alzheimer's Disease Experience

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VOLUME: 3

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YEAR: 1987

PAGES: 1-24

ISSN: 0141-9889

OCLC #: 223444812

PATRON: Gubrium, Jaber

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Jaber F. GiibriiiniStnictiiriiig and destmcturing the coarse ofillness: the Alzheimer's disease experience

The course of Ulness is exaoiined as a k>cation for theassignment of developmental stmcture. Textual analysis andfield data indicate that the stock of developmental oxies forstructuring the a)urse of illness in the Alzheimer's diseaseexperience is as varied as the manifold interests of thoseconcerned. Structuring is practical and occasioned, realised inits variety in an 'ameliorative' mode of communicative usage. Inthe 'tribulation' mode, in contrast, the course of illness isdestructured. A discussion of communicative usage, as acritique of developmentalism, follows.

Introdiicti(Hi

The temporal structure of experience is regularly described in linearand incremental terms. From chronicles of healthy living to coursesof illness, the familiar developmental language includes onsets,stages, phases, plateaus, critical periods, turning points, develqpmentaltasks, maturation, and regression. Whether the logic governinglifelines is viewed as socially organised (cf. Becker and Strauss 1956;Goffinan 1%1; Glaser and Strauss 19^), i»ydiogenetically patterned(cf. Langer 1969; Gergen 1980), or culturally conditioned (cf.LeVine 1973), it is lifelines in principle that are represented, nottheir articulation. Yet, where would courses of living be were it notfor the assignment of chronology to experience?

Based on eaiiier research (Gubrium and Buckholdt 1977;Gubrium and Lynott 1985; Gubrium 1985; Gubrium 1986), theAlzheimer's d»ease (senile dementia) experience is considered forthe biographical work - the life-describing activity - that serves toproduce Unear and incremental depictions of the course of illness.Developmental language is a pervasive code, or means of represent-ation, for the chronology of the disea^ experience, both thepatient's and a>ncenied others' versions. All use variations of the

2 J^>er F. Gubrium

code, in line with their respective interests, providing resources forfadng up to the timing of experiential particulars (Bury 1^2:179).Yet, the descriptive activity that enters into the disease experienceboth structures and destnictures it, now perceiving developmentorder and now total disarray, according to the communicativepurposes of those concerned. As such, the temporal component ofthe experience is not as much structured and embedded in thedisease, as it emerges out of communicative conditions and needs.

Following a medical description of the disease, the study in whichthe data were gathered, and a presentation of the variety ofdevelopmental codes, communicative usage is analysed as aninterplay of two components - code and application

disease

Alzheimer's disease is the most prevalent form of old age 'senility,'causing confusion and memory loss in approximately 7 per cent ofthe ageing population, some 2 millions in the United States. Whilecomparable estimates for the same population in the UK go as highas 10 to 14 per cent in some studies (Kay, Beamish, Roth 1964;Wang 1977) and as low as approximately 4 per cent in others(Bergmann 1975; Roth 1978), intemational comparisons are plaguedby diverse diagnostic and statistical conventions. Nonetheless, the(tisease is said to be the major contributor to the institutionalisationof eldei^ in long-term care (US Dept. of Health & Human Service1984). Once little-known and called a 'silent epidemic', it is nowbeing recognised as the most debilitating affliction of old age.

The disease affects the cerebral cortex with characteristic senileplaques and neurofibrillary tangles. It was first described in a 55-year-old woman in 1906 by Alois Alzheimer, a German neurologist( AMieimer 1907). Previously cdled pre-senile dementia, Alzheimer'sdisease is now considered to t^ continuous with the organic markersand (xtgnitive symptoms of primary degenerative, senile dementia(Terry 1978a).

There are many causal theories - genetic, virdogk:al, toxicological,neurometabolic (cf. Katzman 1983). Curiously, ageing itself is saidto be a possible cause (Reisberg 1981), even while it is asserted byothers (cf. Katzman, Terry, Bick 1978; ADRDA 1982) that, as aubiquitous slogan asserts, 'Alzheimer's disease is not normal ^ein^!'Indeed, a continuing controversy in the neuropathologicsd Uteratureis whether there is a quantitative or quaUtative distinction to be

i^ and dratrw:tiiiiBg the course of iliaras 3

made between processes of ageing and Ab^imer's disease (Terry1978b; TomUnson 1977; TomUnsan, Blessed, Roth 1%8,1970). Atpr^ent, there is no prevention or cure.

Symptoms are diverse. Some list them sin^ily as confusion,disorientation, and forgetfulness. Other symptomatologies presentsigns as broad as aU conceivable troubles of old age, as wide-rangingas being irritable, restle^, and a^tated, to not being able to keep a

saxoant, foigetting to turn ofif a gas stove, and sleepwaUdng.The nosological and symptomological status of Alzheimer's diseaseis such that its categorisation as an illness is constantly challenged bya substantive coincidence with what are said to be normal ageingproce^es. As such, considerable reality-sustaining work enters intotheir separation - the desoiptive activity of isolating the normalfrom the pathological (Gubrium 1986). Part of the activity entailsbringing temporal order to the disease experience, the topic of thispaper.

Thertody

The chronology of the disease experience was considered as part ofa larger study of the descriptive organisation of senility (Gubrium1986). Data were gathered in a number of settings and from variedtexts. The Alzheimer's Disease and Related Disorders Association(ADRDA) is a self-help organisation whose purpose is publiceducation, research support, advocacy, and grass-roots aid tocaregivers (Stone 1982; ADRDA 1982). Founded in 1979, theADRDA is now, in the United States, a national network of over100 local chapters, each sponsoring or focilitating s u | ^ r t groupsfor caregivers and family members. Participant observation wasconducted in the meetings and su{^)ort groups of ADRDA chaptersin two cities in the US, with active membership in one of them.More than any other organisation, the ADRDA has becomethe constant force behind the AMieimer's disease movement.Hie varied activities and campaigns it spon»)rs, supports, andencourages have made Alzheimer's disease highly visible, virtuaUyunderwriting what is now a distinct public culture. Thus, theAlzheimer's dise^e experien^ is increasingly indistinguishablefrom the ideotogy and organisation of tihe ADRDA, fcnmalmembership in the ADRDA not being so mudh a source ofejqx^ure to t l^ (fisease's pubUc culture as a certification of it.

Fieldwork also was conducted for four months in an AMieimer's

4 Jaber F. Gubrium

day hospital affiliated with an acute care fadlity. Irvingnine to twelve patients, the day hospital provided a structared,therapeutic environment and a support group for their caregivers,aU family members. Unlike the ADRDA suf^r t groups ol^erved,which were facilitated by experienced caregivers tiiemselves,members of the day hospital's staff participated in ite relatedsupport group activities. While not ADRDA-sponsored, the dayhospital's support group included facilitator and members whowere active in the ADRDA; those who were not active memberswere, iKinethel^s, familiar with, and regularly esposol to, ADRDAactivities, Uterature, and media.

Data also were drawn from disease Uterature. From its nationalheadquartei^ in Chicago, the ADRDA distributes a variety ofpamphlets and brochures to local chapter members and to theconcerned public at large. It also pubUshes a quarterly newsletterwith the latest research findings, legislative progress, legal advice,pubUdty campaigns, and highUghts of the activities of localchapters. Many chapters pubUsh their own newsletters, combiningnews from 'national' with items of community interest, such aspersonal profiles of the course of illness and burden of care, andanecdotal descriptions of the disease's typical progress. Localchapters borrow heavily from each other for newsletter copy, somuch that, for example, a so-caUed typical chronology of acaregiver's or patient's disease experience appearing in one chapter'snewsletter is soon Ukely to appear in otiier chapters', therebyenhancing their common culture. There is a growing media sectordealing with the disease, appearing in popular magazine articles,public service announcements, broadcast prc^ramming, and newspaperfeatures. Besides the lay Uterature are the varied professional tex^dealing with research and tt^rapeutic appUcations. They, too, offerdisease chronologies, which variously enter into the descriptiveactivities of those concerned.

codes

As the disease's pubUc culture grows, so do component descriptic^of the disease experien<%, one of which is its timing. From siq^mrtgroup proceedings to diapter newsletters and pnife^(»ral Uteratuie,timing is developmentally coded, this despite the repeated assertionthat the disease's varied e7q)eriences are broadly diverse on severalfronts.

i i^ and destructairing tin course of illness 5

The variety There are many codes, of differential renown. Someare products of experienced profe^ional attention to onset andcourse of projp'ess; others are offered as merely useful ways to 'get ahandle on what's happening to a loved one.'

With repeated emphasis that there is 'tremendous variation in thesyndrome pictwe'' (Bumside 1979:16; original emphasis), a goodshare of the related nursing Uterature seems to settle on depictionsof 'the' three stages of the disease. As Bumside (p. 16) notes:'Grunthal, in 1926, first described the three stages of Alzheimer'sdisease and they were described earUer in this paper when theHayter and Pinel articles were reviewed'.

The Hayter (1974) paper, quoted extensively in the nursingUterature and repeatedly referenced in other professional joumalsas well as in the disease's popular texts, is based on a nurse'sexperience working with demented patients and her reading ofrelated professional Uterature. Hayter describes three stages thatpertain to the patient's cognitive and motor activities. Each stage isassigned a time period and its 'dharacteristic symptoms' listed. Thefirst stage of the disease is said to last two to four years. As Hayter(p. 1460) points out, 'Characteristic symptoms are memory lo^,time disorientation, and lack of spontaneity. Memory loss is usuallythe first and most outstanding symptom.' The second stage,'generally extending over many years,' features uncontrolled motoractivity, 'progressive memory loss, aphasia, agnosia, apraxia, atendency to wander off, and such repetitive movements as tapping,lip-Ucking, chewing, folding' (p. 1462), their severity and particularmanifestation depending on where in the second stage the patienthappens to be. The third stage, called 'terminal,' is relatively short,usually lasting not more than one year. It manifests general physicaldecline and eventual demise. Hayter presents the disease's course ofprepress as a series of nursing management jH oblems and accordinglyapplies tempotdX meaning to the disease's impact on self-control. AsI shaU continue to note, the specific developmental code assigned tothe disease experience is as intimately tied to the particulardescriptive interest of th<^e a}ncemed with the disease as it is acharacteristic of the disease itself.

Other developmental codes are offered on behalf of caregiverself-help, typi(^y framing 'tij^' for sorting out what to do as thingsget worse. A D R D A chapter newsletters regularly feature reports ofhow particular caregivers f;ape with the home management of anincreasini^y debiUtated patient. For example, it might be pointedout that 'at first' or 'in the early st^es of die disease,' the care^ver

6 Jaber F. Oabrium

was in a quandary, say, because her hudiand was doing 'all sorts ofstrange things.' In the be^ning, she tried to sort out what washappening and how to deal with it. But when she learned thediagnosis and prognosis, and thinp got pr<^ressively worse, thelater stages of the disease required, as one feature put it, 'getting myact and feelings together to deal with this thing.' Eventually, it istypically pointed out, one has to confront the inevitabilities, thedecision to institutionalise the patient or the acknowledgement ofimpending death, the presumed last stage. Some surest that onenever completes a final stage as a caregiver, for as a familiar diseaseslogan describes it, the experience is 'like a funeral that never ends.'While the number of stages and their particular durations are tied totheir individual describer's experiential particulars, as develofHnentaicodes, they constitute recognisable, collective representations in theservice of everyone's self-help (cf. Gubrium and Lynott 1985).

Codes vary in detail. Hiere are the ubiquitous simple referencesto earlier and later stages of select aspects of the disease experience;others are elaborate stage and critical point constructions. One ofthe most detailed was developed by Berger (1980), a physician.Rather than zeroing in on the cognitive decline of the Alzheimer'spatient as such, Berger foimd it more useful to organise his 'severityrating system' around the progressive care needs of the patient. Heexplains (p. 235):

Since the aim was toward something simple that nurses, social workers,therapists, aad physicians alike could easily remember, and toward aseverity rating based on what the patient needed in the way of care, itbecame a matter of reducing the number of words in the description ofeach class to a bare minimum, yet retaining a clear distinction betweenclasses.

Berger presents a '6-stage classification,' which, according to him,was developed over a number of years. Severity Class I is describedas {the patient] 'can function in any surroundings, but £orgetfulnessis often disruptive of daily activities,' and Severity Qass II as 'canfonction without direction only in familiar surroundings.' With eachseverity class, the patient is less able to help himself, making itincreasingly necessary to organise cares for him. In Severity ClassVI, the final stage, the patient is 'b^ridden or confined to a diairand responds only to tactile stimuli.'

Berger notes (p. 235) mt die onxdistinction between Severity Oass^ HI and IV, where a crudaltransition or 'core midpoint' occurs:

Stnicturing and deS£nK uring the course of i

Tbe key to this 6-stage d^sMication is tlie distinction between SeverityQass in , in which the {Kitient must be told to pull up his pants(direction), and Severity Oass IV, in whidi someone has to pull up hispants for him (assistance). The other classes fall to either side of thiscore midpoint, from Severity Qass I, in which the principal problem isforgetfulness, to Severity Class VI, which concems vegetative patients.

The transition is critical for it changes patient management fromprofessional concem and guidance to hands-on attention. The otherseverity classes are simply temporal variations of the distinctionbetween direction and assistance.

With the key or core midpoint, Berger not only is using arelatively elaborate stage model to describe the disease's timing, butalso distinguishes what is often caUed a 'critical' period. A criticalperiod is a time unit like other periods, but reverses the figure andground of event and chronology. For example, other periods -Severity Classes I, II, V, and VI - frame what is happening, so thattime dominates need events. Contrastingly, in bridging SeverityClasses III and IV, need events govem timing, the transitiondepending not as much on the mere passage of time as on how theconcrete interactive details of patient response, care, and managementare interwoven. While, as timing, oitical periods, Uke developmentalstages, are tied to descriptive needs, they assign developmentalorder to new, not simply emerging challenges.

Complexity is not the exclusive property of professional codes.Field data show that informal personal accounts of coping histories,mutually presented by caregivers gathered in su [^ r t groups, canramify complexity well beyond any codes available in lay orprofessional texts. On occasion, support group proceedings reaUseempiricaUy embeUkhed axles with infinite stages and substages,developmental terminology used to conversationally indicate bothexisting and yet unforeseen phases in what is otherwise both apersonally and collectively emerging experience. A participant whoagreed that everything she'd heard in the lively exchange of stageparticulars informed her of 'all the many phases and stages of thisthing,' added, 'and I can see down the road all the innumerableother stages there'U be.' When another participant responded, 'Andwait until that criticd period when he [the patient] doesn't evenrecognise your face and thinks there's a strange woman in thehouse,' timing bends as weU as glides. In many se^ions, suchdescriptions and language served to frame aU forthcoming appreci-ations and apprehensions of the past and future course of thedisease.

8 Jaber F. Gubrium

Still, from session to session, support group participant were notas much cognitively governed by the complexity of received andemergent axles as they now complicated and now simplified thecourse of illness in accordance with their ongoing attempt to maketemporal sense of the disease experience. Moreover, as I address itin greater detail later, while it is evident that earlier and later serveto organise what is otherwise a highly diverse ensemble ofexperiences, the experiences are also said by some, on occasion, tobe without any rational organisation, neither in time nor substance.

However complex or simple time references are, they nonethelessprovide, as ordering devices, a minimal seriality to objects ofconcern, thereby offering objective reference pointe for Unes ofconcrete activity (Williams 1984). In this respect, the differencebetween complex and simple temporal codes lies not as much intheir relative capacity to frame and pattem experience, which allcodes do; but in their comparative experiential challenges. Hioseconcerned with the concrete products of complex developmentalcodes simply have 'more' to deal with, whetiier conceitedly orapprehensively. In a manner of speaking, a complex code does morewith words to either aid one's hold onto its respective reality or toinform one of its manifold hurdles.

Codes also vary in focus of application. Certain codes present thetypical course of the patient's disease experience, some centered onparticular aspects such as the stages of the patient's emotional life orcognitive decline; other codes address the timing of the caregiver'sresponse to the disease, what he or she ordinarily 'goes through' asthe disease progresses. There are even codes for the stages ofdedsion-maldng about institutionalisation (cf. Lynott 1983).

Consider, for example, developmental codes pertaining to thecaregiver's adjustment to the disease, usually a spouse or an adultchild, often said to be the disease's second victim. In part or whole,the stages of adjustment typically resemble Kflbler-Ross' (1969)five-stage model of dying, comprised of denial, anger, bargaining,depression, and acceptance. Adapting the model, the caregiver'semotional adjustment is said to progress in the familiar pattem,from a denial that anything is 'really' inexorably wrong with a lovedone, to final acceptance of progressive dedii^ and terminality.

Some abbreviate the model, as one support group participant did,who spoke of

. . . just going from denial to dei»-^on. I think I'm in that depre^edstage ri^t now. I've seen what's been haf^ning and I'm slowly

Structuring ami desttucturi^ the ctNirse ci Sbwss 9

realising, as we all try to do and help each otter see eadi other throu^it But I just, dam it, I just can't aa%pt it yet. Ymi try to hang on,like maybe there's some hope, like that iH-ain jnimp therapy.

There's no mention of anger or bargaining in this participant'scomment.

Others present their emotional adjmtment in full accordance withKiibler-Ross' five stages. Some even embelUsh them, speaking, asone did, of 'that early phase of the depression stage when you're juststarting to feel blue.' This she cx>ntrasted with a later phase ofdepression that 'numbs you, Uke you feel all alone and unable to doa thing.' There are critical points, too, where time more nearlyserves practice, as when the adult daughter of a patient mentionedto aU those gathered in a support group that 'everyone's been at thatpoint when things can go to acceptance or bargaining back and forth. . . and that's the hump you've got to get over and it aU depends onwhat you make of your Ufe with him [the patient].'

The Kubler-Ross model also informs the many coping strategiesoffered in caregiver handbooks and facilitator training manuals.Those who are to professionally intervene in the burden of care orotherwise to help caregivers cope are reminded that there aredistinct stages of adjustment and that succ:essful interventiondepends on accurately assessing where the caregiver 'is at' with hisor her feelings. For example, one so-caUed 'leader's guide'(Bonjean n.d.), prepared to aid those faciUtating family supportgroups in nursing homes, suggests that 'tearful sessions' actually beplanned for, where 'at some point in this session, the followingemotions should be talked about and clearly identified as "normal"and to be expected' (p. 13). The emotions Usted are those surroundingnursing home placement - guilt, depression, role conflict, loss.

Not all developmental codes pertain to individuals. A substantialliterature deals with the natural history of the support group,presenting changes in its cx>ncems in developmental terms. Forexample, an issue of Generations magazine entirely devoted toAlzheimer's cUsease and related d^rders contained an article byGwyther (1982) on caregiver self-l^lp grou{%. Writing about relatedroles for professionals, Gwyther describes intervention in terms ofthe group's developmental stages. In the early stages, where there isa need for curative and i^rvice information, the faciUtator can act asa knowledgeable resource. In the later stages, when members of agroup need autonomy to e^^mune self-fclings, the professionalshould disengage. The ^oup's natural course of progress, from a

10 Jaber F. Gubrium

curative/patient orientation to a concem with self-adjustment, isrepeated in an article by Bames and others (1981:81) that describesthe stages undergone by an eight-week support group establishedfor 15 family members of Alzheimer's patients Uving at home.

Hie focus of group discussion seemed to move thrcnigh three relativelyseparate stages. At first, discussion consisted primarily of stories abmitpatients, and this allowed ventilation of long pent-up feelings. Duringthe middle phases, members focused on trying to help each other solvetheir practical problems in the day-to-day task of caring for the patient.In the later sessions, discussions shifted away from the patients andcentered more on the personal needs of the caretakers.

All in all, whatever aspect of the Alzheimer's disease experience isfcx:al - the patient's encounter with cognitive decUne; the caregiver'sadjustment process; the natural history of the support group; thecourse of intervention - there is a need for order. Nothing (no thing)can be addressed, dealt with, denied, or become adjusted to, untUits substance and temporal outline are evident and clear. The pressfor clarity and order is made quite evident in this comment byDubler (1982:12), who writes of the legal priorities of theAlzheimer's disease experience and the need for 'teachings' akin tothose of Kubler-Ross:

But is that patient not entitled to share the same process of mourningwith his or her family as the dying cancer patient? If Alzheimer'sDisease is described as a 'living death,' shouldn't patients know about,ponder and face it to the best of their ability? Patients can then beassured of the same continued loving and supportive care promised todying patients. We may have to await a seminal work, akin to that ofKubler-Ross (1969) to teach us how to talk about 'living death,' how toprepare for it, and what the stages of emotional divestment of ademented person from him - or herself may be.

The tension Desfnte the developmental texture of the codes andtheir focal variety, they stand in notable tension with what isregularly perceived as the disease's disarray. The content analysis ofdisease Uterature and the field data indicate that, while Alzheimer'sis developmentally represented, at the same time, it is admittedlyicUc^yncratic and without 'rhyme or reason.' As far as timing isconcemed, although there is, say, progre^ive decline in thepatient's cognition that can be descrilM d as stage-like and finallyterminal, it is also said that there is remarkable variation. Jbideed,the variation is sometimes so great as to defy developmental logic.TTie tension hangs on whether disarray is taken to be a imxtc ot less

Structuring and d^ttiKturing the couise of illiKss 11

rampant variaticm cm what is otherwise an ordered experience, onthe one hzuki, or is perceived to ^Upse the {fusibility of anoverriding order, on the other - the question of how disarray signalsstructure.

A popular govemment pubUcation, Q &A: Alzheimer's Disease(US Dept. of Health & Human Services 1981), distributed by theADRDA, describes the disease experience in question-and-answerformat. FoUowing a short answer to the question 'What isAlzheimer's disease?' its symptoms are presented. The first andsecond paragraphs of the answer conceming symptoms are telUng,the first parz^raph ordering the disease, the secx>nd one pre^ntingthe disease's incUvidual disarray. Part of the first paragraph reads:

At first, the individual experiences only minor and almost imperceptiblesymptoms that are often attributed to emotional upsets or other physicalillnesses. Gradually, however, the person becomes more forgetfol,particularly about recent events.. . . As the disease progresses, memoryloss increases and other dianges, such as confusion, initability,restlessness, and s^tation, are likely to appear in personality, mcxxl,and behavior.... In the most severe cases, the disease may eventuaUyrender its victims totally incapable of caring for themselves.

The famiUar developmental code is evident. As often stated, theonset of the disease is insidious, frequently mistaken for otherbehaviours. But as its inexorable cx)urse of progress unfolds, thesymptomatic markers emerge. Finally, total incapacity sets in. Thenatural course of the disease is realised - inevitable, progressivedecline.

Yet, as we read on to the next, the second, paragraph, we leamotherwise. It states:

There are many different pattems in the type, severity, and sequence ofchanges in mental and neurological functioning that result fromAlzheimer's disease. Tlie synqitoms are progressive, but there is greatvariation in the rate of change from person to peison. In a few cases,there may be a rapid decline, but more commonly, there may be manymonths with little change. Limitations in physical activity during thelater stages may cause the person to have less resistance to pneumoniaand otlwr phj^c^ illnesses that may shorten remaining life expectancyby as muc^ as one-half.

And so, we leam, tcx>, that while the disease is progressivelydebiUtating, the sequence of changes is varied. This impUes both wp&and downs, so to speak. Incieed, there may be lengthy pericxls oftime when litde or nothing changes in the patient. But as the

12 Jaber F. Gubrium

s, while there are mmiy different pattems (c&array),they do not upst^e the relatively clear description of gradualdecUne depicted in the first because what is being acMressed isdevelopmental theme and variation.

In another widely cUsseminated govemment pamphlet, aimed athealth care practitioners (US Dept. of Health & Human Services1980), the simultaneity of developmental logic and cUsarray appearsagain, this time nested, not juxtaposed. On pages two and three ofthe pamphlet, the ciistinct developmental chronology of the diseaseis outUned and, intermittently, seemingly upstaged. It is worthquoting at length.

The behavioral hallmark of Alzheimer's disease seems to be memoryloss, especially for recent events. But many other behavioral changesare caused by the illness. In its early stages, Alzheimer's disease canlead to inability to concentrate, anxiety, irritability, agitation,withdrawal, or petulence. Later, the Alzheimer's patient may lose theability to calculate, may exhibit lack of judgment, may becomedisoriented as to time and place, may be unable to understand jokes orcartoons. Some persons with Alzheimer's disease tend to wander aboutand lose their way; some become prone to temper tantrums; some aredepressed; some forget the names of friends and neighbors, or forgetwords or forget how to make change. Although the timing and sequenceof lost function varies from patient to patient, those in the final stages ofAlzheimer's disease tend to exhibit the same traits - apathy,disorientation, and lack of concem about others' opinions.Occasionally, though not always, Alzheimer's patients becx>meincontinent in the final months of life.

We are presented the disease's haUmark stages and, within the verycourse of the presentation, find buried the statement that timing andsequence - the theoretical badges of developmental logic - varyindividually. But because the cUsease is being highlighted, theinterpretation and understanding of variable particulars serve toiUustrate the diversity of the developmental theme.

In a similar vein, recaU Berger's (1980) six-stage severity ratingsystem. After outlining and iUustrating the need characteristics ofeach stage, Berger cautions (p. 235) that 'it is the compcMiite picture[not 'a single failing'] that helps to decide what the patient needs andwhere the patient wiU fit in this classification.' He continues:

Moreover, it is not uncommon, particularly before serious deteriorationsets in, for the picture to vacillate day to day. Further, while the cKseaseremains, the severity is not permaiaent nor is it forever progressive.Once the patient feels secure in his environment, or the superimposed

Structuring and (testructuring die course of flteess 13

congestive l^art failure has cleared, or the bronchitis has subsided, thephysician, the patient, and the loved ones may well be rewarded with achange from Class IV to Claira II.

Note that, as in an earUer extrac:t from a govemment pubUc:ation,Berger categoric^ally separates the disease, on the one hand, fromthe incjividual patient, on the other. The tension in the developmentallogic, between the severity classification system's structuring of thedisease and the possible eclipse of order by individual patientvariations, is resolved in favor ('may well be rewarded') of areclassification of individuals in an otherwise overriding classificationsystem.

Now consider a series of exchanges where the cx)urse of illness isboth structured and destmctured, where, altemately, disarrayserves to thematise ordered variation and to destruc^ture it. Theseries of exchanges is illustrative of what is a virtually admitted caseof structuring and destmcturing. As argued and shown in the secx)ndpart of this paper, the apparent tension in these and other instancesis resolved by what is cxjmmunic^atively being accomplished withdisease description - usage - not through representational clarific:ation.

In one of the support groups observed, sponsored by theAlzheimer's disease day hospital, staff members regularly apprisedparticipating caregivers of the latest research findings and experimentaltreatments. Caregivers were repeatedly cautioned, too, against falseleads, unrealistic expectations, and quack cures; in turn, theyfrequently consulted staff facilitators for disease information.

On one occasion, a research psychologist requested permission toask caregivers if she might observe them in their homes for two orthree hours at a time, to gain the benefit of the real Ufe details ofhome care for Alzheimer's patients. Along with the request,caregivers were reminded that the psychologist continued toconduct her study of the patients' cognitive decUne and the burdensof care, and were invited to 'ask the expert,' if they wished, abouther findings for particular patients.

AccorcUngly, one of the c:aregivers, whose husband was a dayhospital patient, asked if the psychologist could offer an assessmentof the patient's early, midcUe, and later stages of disease. Theinquiring wife explained that she wasn't able to ask about it earlierwhen she and the psycholog^t had reviewed the husband's testresults. The {Kychologist responded by cautionii^ the participantsas a whole against guIUbly accepting s ta^ theories of Alzheimer's,explaining that

14 Jaber F. Gubrium

. . . there's just no consistent evi^nce for many of them [st^^es], andthat's what's so frustrating about it. You read about (me sti^e modeland another and you ask what evidence it's based on, how m^iy cases,but they don't usually say. Each case is unique and different fromothers. They come up with stages... [she pulls a brcKhure out of herbriefcase] like this one here. [pauses to find example in the brochure]

As the {^ychologist flipped through the brochure, the inquiring wiferemarked:

Well, I can see and I think we all accept that everyone is different. Eachone is a unique individual. But there must be some overall pattem to it.. . otherwise how can anyone say that there's any sense to the wholething?

But as the psychologist now read the excerpt from the brochure thatmeant to iUustrate her caution against unacceptable models, thewife, Ustening, heard stages described and readily agreed that, yes,there were stages to the disease such as those read aloud by thepsychologist. Indeed, the wife was especially responsive when thepsychologist read that, in stage two, it becomes more and moredifficult to make sound business decisions. The wife, whose nowdemented husband had owned and onc;e successfully managed afairly large business, elaborated the particulars of what she heard ass t^e two by illustrating it with reference to several 'poor businessdecisions' her husband had made before the cUsease was frUlyreaUsed. The wife pointed out that the decisions were not perceivedas a stage of the disease until much later. To this, the psychologistresponded:

That's pretty typical, as I'm sure most of you would agree. TTiebeginning stages of this thing... as we say, the 'onset'... it's prettyunclear. It's an insidious onset. But as the disease progresses, thepicture gets clearer and you start to get the typical symptoms of thedisease's later stages - the disorientation, the confusion, the wandering,the pcx)r decisions like you mentioned. And you cope and manage asweU as you can. TTie picture's a very familiar one.

As the psychologist now used developmental language to frame hercomments on the cUsease's cx}urse of progress, she was joined byothers in the group, who cUdactically elaborated the particulars ofeach stage referenced by means of incUvidual disease experiences. Itwas soon admittedly evident to all, inducing the psychologist, thatthe group had teamed a great deal about the typical couiise of thedisease, what to expect, and how to deal With eacSi stage. At one

Structuring and destructuring tb& course of illness IS

point, in fact, the inquiring mfe thanked the i^ychologist forshedcUng Ught on where her husband now was and where he soonwould be.

References to what the husband under cxinsideration wouldbecome immeciiately generated disagreement. One of the caregivers,the adult son of a demented mother, gently chaUenged thepsychologist's de^niption of aggression as a hallmark of the thirdstage of the disease:

I don't want to be disagreeable but my mother's been aggressive allthrough this thing. It's the first thing we noticed. You all know howeasy-going and considerate she was . . . well, when she started to bullythe family, I think that's when I started to notice the Alzheimer's. It'sbeen like that from the very beginning.

Another participant, the wife of a demented patient, claimed thatshe'd never seen a trace of what she would caU aggression in herhusband. According to her testimony, it was the wandering andconfusion that 'opened [her] eyes to the fact that he just wasn't thesame man I married.' Several others deliberated the varied anddifferential features of each stage, at times agreeing but more oftendisagreeing about what was typical.

Amidst the deUberations, the psychologist indicated how exasper-ating the cUsease was, how it was a different thing for each of them,as she reminded the caregivers what she had pointed out in the firstplace. Several times, participants shn^ed in frustration, cxindudingthat there just wasn't any sense to it aU. In exasperation, the adultdaughter of a demented mother asked, 'How am I supposed toknow what to do if no one can figure anything in this thing?' Whathad earUer been, and what was later again to be, developmentaUystructured, had momentarily become undone. But the destmcturingof the experience under consideration was soon to be transformedinto renewed order, at the repeated behest of the wife who posedthe original question that began the day's exchanges. Addressing afaciUtator, the wife pleaded:

Would one of you please help us to sort this out? Teach us how to seewhat's happening so that... so's we can at least see some kind ofpattem and the changes and everything.

The wife's request was not unusual. Such requests are frequently inevidence in the varied personal cUsease accounts that appear inADRDA c h ^ e r new^tters. While some accounte e)q>ress frustrationthat one of the burdens of the disease is its unprecUctable course.

16 Jaber F. Gubrium

where 'no two cases are alike,' other accounts present detaileddepictions of what, despite the broad incUvidual variations, is 'theclassic course of the disease.'

Cmnmuiikative usage

How can the acceptance of order and disarray in the course of illnessbe explained? For that, I tum to communicative usage.

Communicative usage is descriptive activity, to be distinguishedfrom descriptions as such, or representations. As descriptions,representations are commonly evaluated in terms of whether theyconsistently and accurately depict their subject matter, otherwisereferred to as reliability and vaUdity. Those concemed with theacceptabiUty of representation, from laypersons to medical scientists,take it for granted that accurate descriptions stand in one-to-onecorrespondence with their subject matter.

Yet, descriptions are also part of describers' everyday lives.Acceptable or not, we must describe in order to have descriptions.As an activity, description takes on communicative usage and,accordingly, can be examined for the purposes toward which it isbeing put. Therein Ues an interpretation of the representationaltension apparent in the developmental order and cUsarray of theAlzheimer's disease experience.

Amelioration versus tribulation Communic^ative usage in thedisease's oral and written accounts suggests that those concemedserve two different purposes in assigning to, or withdrawingdevelopmental order from, the course of illness: ameliorating thedisease experience under cx)nsideration or expressit^ its tribulations.As it is often put, amelioration refers to attempts to 'do somethingabout what's happening.' What is happening, of course, is manifold,ranging from the cognitive and affective responses of both patientsand caregivers, to the changing orientation of supportive concem inself-help groups. Likewise, doing something about it is as varied asthe responses of those concemed, from professional attention to thecourse of iUness to caregivers' attempts to plan for, and makepersonal adjustments to, the home care of the patient.

I refer to communicative us^e in regard to descaipticms concemingdoing something about what is happening as its ameUorative mode.For example, a professional article that sets out to organise thecourse of illness in accordance with patient management needs, asBerger's (1980) does, describes the disease experience in the

Stoucturing and destructinu^ the course of iUness 17

ameUorative mode. The artictes aim to structure an aspect of theexperience for purpc^es of intervention. Or, for instance, aparticipant in a support group who wishes to look ahead and planfor the home care ai her patient, wants to be taught what to expect.She asks for a description of things to come in the ameliorativemode.

The ameUorative mode is not necessarily wholly charitable orobviously beneficial. It merely refers to the use of developmentallogic in the service of 'doing something about it,' regardless of thedesirabiUty of outcomes. For example, there were times in thesupport groups stucUed when some participants took what othersconsidered to be a rather harsh attitude toward institutionalisation,in which those concemed wanted to know precisely when - at whatstage - in the course of illness one experienced 'the last straw' andbegan seriously to look for a nursing home. That particular stagewas commonly described as thecrudal moment, the critical point atwhich doing something about the iUness meant entering upon adifferent timeUne of concern than home care.

The tribulation mode, in cxintrast, refers to communicative usagein respect to frustration over the lack of perceived order in what ishappening, not in the absence of happenings as such. Both writtenand oral acxounts of the disease's timings suggest that, on occasion,those concemed perceive too many different things as occurring:aggression throughout the course of illness for some, aggression at aparticular point in time for others; gradual cxinfusion and disorientationin some ceases, periodic lucid moments in others; progressiveemotional adjustment by some caregivers, cx>ntinual denial orrecurrent anger among others.

Not only can social comparisons suggest overaU developmentaldisarray, but self-comparisons over time can too. It was notuncommon, in the tribulation mode, for incUvidual participants inthe support groups observed to engage in near soliloquys over theongoing perceptual travails of the iUness experience, notably overtheir inability 'to get a handle on it' and with the lack of any 'rhymeand reason' in aU of it. References were made to differentexperiences that refiised to developmentally bear out each other.Later periods cUdn't seem to reasonably follow from earUer ones,nor were earlier ones predictors of thin^ to cx>me. In regard to herfeeUngs, one adult daughter stated, 'It's like an emotional rollercoaster; sometimes you think you're going up and, bang, you c»medown.'

The relationship between the tribulation mode and the related

18 Jaber F. Gubrium

frusfration is not unidirectional. There are cxx^asions when delibera-tions over the typical course of iUness leacis to cUsagreements £rad afinal consensus about the lack of order, commonly exasperatingparticipants. There are other occasions when commiseration overerratic burdens of care infer that there is no clear structure todecline, leacUng those concemed to question the clarity of thecUsease's developmental logic. The overall concem with the courseof iUness, as it enters into the related affairs of those involved, is, inthe tribulation mode, a mutual dcx;umentation (Garfinkel 1967) offrustration and perceived lack of temporal order. It is a rounci ofpractical theory and proof which serves to confirm that, as onecaregiver remarked, 'You just can't seem to makes heads or tails ofwhere it's going.'

The uses of disarray In the ameUorative mode, cUverse individualtemporal experiences are used to dcKument the general - typicaldevelopmental cx>des - which, in tum, provides a conc rete sense oforder and variation, structuring the disease experience. A regularfeature of ADRDA chapter newsletters are items presenting thevarious stages of select disease facets. For example, the summer,1985 issue of the Fort Myers, Florida ADRDA chapter's newsletteroffered two different stage models, explaining:

Many different articles have been written alx)ut the different stages ofAlzheimer's Disease. Here are two that seem helpful in looking at theprogression of AD in very different ways. The first article is from thePortland Area Chapter, and divides the [three stage] changes intocognitive, personality, and functional areas. Tlie second article comesfrom the St. Louis Chapter and was written by Valerie Watson, 15. In'Understanding My Grandmother,' she documented the age of hergrandmother when a symptom ocx:un'ed. Tlie stages [in a four-phasemoclel] were developed by research scientists but Valerie shows howindividual the process of deterioration really is. Keeping a similar recordmight be beneficial to you.

Thereafter followed the two mcxlels.In the ameliorative mode, the developmental models are high-

lighted as two proffered means of doing something about the courseof illness, formulated in the phrases 'two [models] that seem helpfol'and 'similar record might be beneficial to you.' Both Valerie'sincUvidual acxount designating the specific years her grandmotherchanged, and the illustrative incUvidual behaviours listed under eachstage or phase of the respective models, serve the descriptivepurpose of indicating developmental theme and variaticms. While

Stnicturmg and destmcturing tt^ course of iUnes 19

Valerie's account 'shows how individual ttie process of deteriorationreaUy is,' it is nonethdess pre^nted in the service of iUustratingvariations cm an overarching ctevelo{»nenM code, not as a fiuMJamentalchallenge to its ordering function. Indeed, readers are invited to'keep a similar record,' using the stages as a 'beneficial' means ofdocumenting incUvidual variations in the process of deterioration.Thus, Valerie's 'reaUy' individual difference does not as much serveto destmcture the developmental course of the disease as it is usedto display an instance of it. Likewise, the two models presentedoffer readers a choice of 'looking at the progression of AD in verydifferent ways,' while still lcx)king at the progression, as cUd thegreat variety of erodes discussed earUer offer a cUverse, yetcommonly developmental stock of resources for structuring ('staging')any range of individual differences.

In this regard, returning to Berger's (19^) model presentedearlier, we find that the apparent descriptive tension over develop-mental order and disarray does not destructure what, according tohim, should be a 'composite picture,' because individual cUfferencesare presented as variations on a general code. The severity ratingsystem, in fact, is presented toward the clarification and organisationof individual disarray. As Berger notes, even while there areindividual differences, 'the disease remains.'

In tribulation mode, in cx}ntrast, individual cUfferences, anddiverse developmental cx>des in their own rights, serve a differentcommunicative funcrtion, their descriptive tension resolved in fovourof disorder, destructuring the disease experience. For example, atone point in the prcxeedings of an Alzheimer's disease conferencesponsored by a chapter of the ADRDA, it was evident that thestock of developmental codes itself was considered to be too great toaccommodate any credible sense of order in select attendee'sexperiences with the cUsease. In an aftemoon cUscussion pericxlfollowing a presentation of the stages of adjustment to the burdensof care, a social worker in the audience remarked at length:

I've heard many things today. This moming we were told b y . . . aneurologist I believe it was . . . that there are three stages of progressivedecline and that means that we, as service providers, should be preparedto deal with three stages of adjustment. Now I hear about six stages and,if my notes are coirect, some of them sound to me iike they're thereverse of what we heard earlier. Several times, a couple of thepresenters warned us about th^e being no discenilble stages.

As a socaal worker mtb a lot of expeiknce working witii Alzheimer'spatient and their £ainiUes, I run across many, many c^iuuons abcHit iK)w

20 Jaber F. Gubrium

the disease progresses and many models and, if you ask my opinion, Ithink it's gotten out of hand. I can just pick and choose whatever I needto say and say it. It's that simple. It really doesn't help matteis muchwhen you really want to understand what's happening to these families.

DeUberation over the timing of select aspects of the cUseaseexperience also shows that conversants oscillate between cotn-municative usages, thereby serially structuring and destructuring thedisease's developmental order, evident in the earlier case of apsychologist's participation in a support group's proceedings. In theameUorative mode, the psychologist was asked to describe thedisease's stages in a husbancl, to which the psychologist responded,in tribulation mode, that one of the disease's frustrations is thatthere are no clearcut stages. Attempting to illustrate her comments,the psychologist inadvertently served to suggest its opposite to theinquiring caregiving wife, who subsequently lent concrete individualsupport to the general account of stages she heard being offered.Responding to the wife's comments, the psychologist then began tovirtually teach the disease as expressed in the husband, for which anumber of others provided personal credence. But then, in achallenge to the developmental code being considered and elaborated,a number of participants began to compare stages and, in a mannerof speaking, proceeded to upstage it all. This time, the individualdifferences in their experiences with the course of iUness were seenas too great to accommodate a clearcut, general order, being, intum, a sign of the disease's fmstrations. The jwychologist nowreminded the group that she had said as much earUer. Yet, as timepassed, it became evident that the need to be able to do something,to rationaUy organise an approach or adjustment to what washappening, urged another stmcturing of experience. Disarray, thus,was seriaUy used to structure, destmc:ture, and restmcture thecx>urse of illness.

CoiKluskin

In and about worlcis of everyday Ufe are innumerable signs of order,more or less articulated through material traces and behaviouralregularities. Confusion, disorientation, and agitation, it is said, areamong the signs of dementia in old age, definitively beingAlzheimer's disease when accompanied by characteristic organicmarkers in the cerebral cx>rtex and the appro{»iate long-termpersonal and family histories. Yet, interestin^y, equivalent signs

Structuring and destrui^uring the couise of iUness 21

represent what is called 'normal ageing,' grounded in the organicand life historical markers. I have argued elsewhere that we mustpartially tum away from such apparent contradictions and theirsubject matter as suc^, to their prac:tical organisation, in order toreveal the separately perceived entities that disease and normalageing are taken to be (Gubrium 1986). As Silverman (1985), tcx),more generaUy maintains about the relationship of order andassignment, the realities of everyday life are loc:ated in theirpractical dialogue, the reaUties being equally concrete and artful,sustainable as separate entities only within courses of concem andconduc:t.

In this paper, I have examined the apparently ordered, and yetlikewise disordered, world of a course of illness. It is a world fraughtwith a wide-ranging stock of ordering structures - developmentalcodes by which to perceive pattem in particular facets of relatedexperiences. The variety is as broad as the formal and informalinterests of those cx)ncemed. As such, that which is perceivable inthe Alzheimer's disease experience reflects manifold attentions andintentions.

Still, while there is a weighty and continuaUy expanding stock ofdevelopmental cxides, those cx}ncemed do not repeatedly code andrecode - stmcture and reconstmct - their charges and personal orcoUective responses. The Alzheimer's disease experience, for one,shows that a particular form of descriptive activity serves todestmcture it. Examined in terms of communicative usage, we haveseen that experience is not exhausted by codes and cocUfication; agood share of it is concertedly uncocUfied, admittedly uncocUfiable.The tribulation mode of address destmctures it. Of course, itthereby serves inaction, the inabiUty to do something about 'it.'

Therein Ues a very important clue to the nature of the varied 'its'of everyday life - how inexorably tied things are to the lifeworlds ofthose concemed. The le^on of the tribulation mode is that it isimportant, too, not to make 'every-thing' out of experience, as itwere, for, on occasion, it is frustratingly comprised of nothing at aU.(I would venture to guess that the overfilling of experience withconcrete meanings - things - is as much a product of scKial scientists'aim to reveal its stmctures as it is an ongoing artifact of nativepractice.)

I suppose one might argue that the tribulation mode contains acode of its own, the stmcture of cUsarray. Yet what is this tocomprise as a guide to practice? Doing nothing? The Alzheimer'sdisease data surest that, ratiier than being a course of action, doing

22 Jaber F. Gubrium

nothing is a tribulation, something acknowledged on occa^on but tobe avoided if anything at aU is to be done. There is a cUfferencebetween advisedly doing nothing because, as things stand, nothingshould be done, on the one hand, and not being able to do anythingbecause nothing is evicient to do anything about, on the other. It isthe latter experience that confronts thc^e concemed in thetribulation mode, the lack of order, not what it suggests we don't doin response to it. In this vein, the tribulation mode contains notemporal code, leaving those concemed bereft of a meaningfulobject of address, actively or inactively. Unless analytic credence begiven to the difference between structures and de-stmction, ascx)ncrete conditions of experience, all behaviour is reduced toconduct, aU attuned to objec:ts of concem, the relation betweendoing nothing and nothingness indistinguishable.

The developmental code and its disarray, and the mutualdocumentary applications of individual experiences and the disease,offer those cx>ncemed broad descriptive resources for communic^ativepurposes. As Durkheim (1%1) might have suggested, Uke peopleand their gods, those involved in the Alzheimer's experience get thedisease and course of iUness they both deserve and need. Theconcemed do not as much encounter general developmentalregularity in the course of illness, as they use it and its destmcturedopposite to both express and guide their actions and relatedfrustrations. In practice, we find that developmentalism enters intoexperience more as culture than as regulating structure, reveaUngdevelopmentalism's symbolic and practical functions (c:f. Gubriumand Buckholdt 1977; Bury 1982). As such, while I have focused inparticular on the developmental structuring and destmcturing of acourse of illness, the argument is, more generally, a c:ritique ofdevelopmentalism as a temporal theory of conduct.

SociologyDepartment of Social and Cultural Sciences

Marquette UniversityMilwaukee W153233

USA

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