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http://dem.sagepub.com/content/early/2011/10/05/1471301211416615The online version of this article can be found at:

 DOI: 10.1177/1471301211416615

published online 9 October 2011DementiaRobert W. Schrauf and Madelyn Iris

memory and behavioral problems associated with dementiaVery long pathways to diagnosis among African Americans and Hispanics with

  

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Article

Very long pathways todiagnosis among AfricanAmericans and Hispanicswith memory and behavioralproblems associated withdementia

Robert W. SchraufPennsylvania State University, USA

Madelyn IrisLeonard Schanfield Research Institute, USA

Abstract

Research shows that African Americans and Hispanics experience longer delays in dementia

diagnosis than do whites. This study focuses on the duration and direction of help-seeking

pathways among individuals who had either very short (median: 1 year, 9 months) or very long

(median: 9 years, 2 months) times-to-diagnosis. Participants reported the frequencies of events,

actions, outcomes, and results around four key time points in the pathway: First Notice of a

Problem, Recognition of a Pattern, First Doctor Visit, and Final Diagnosis. Using reported

frequencies of events, actions, and outcomes around these events, we constructed the modal

pathway or ‘canonical narrative’ and then used correspondence analysis of the data to model

short and long pathways. Short pathways were dominated by stepwise movement toward

diagnosis (84.5% of inertia or variance) and some ambivalence around symptom recognition

(10%). Long pathways were marked by a shift away from movement toward diagnosis (44.5%)

but toward the family’s taking over key quotidian tasks (55.5%). We suggest that Hispanic and

African American caregivers effectively provide a kind of ‘scaffolding’ for the patient, which may in

fact be adaptive rather than dysfunctional. Thus, delayed diagnoses and non-diagnosis may reflect

‘active’ choices for dealing with the disease rather than avoidance of the problem.

Keywords

correspondence analysis, delays to diagnosis, dementia, help-seeking pathways, social course of

illness

Corresponding author:

Robert W. Schrauf, Department of Applied Linguistics, 305 Sparks Building, Pennsylvania State, University Park,

PA 16802, USA

Email: rws23@psu.edu

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DOI: 10.1177/1471301211416615

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Introduction

In a seminal paper on help-seeking pathways, Rogler and Cortes defined a pathway as ‘thesequence of contacts with individuals and organizations prompted by the distressed person’sefforts, and those of his or her significant others, to seek help as well as the help that issupplied in response to such efforts’ (Rogler & Cortes, 1933, p. 555). Such pathways haveboth duration (the time lapse between initiation of seeking and the final contacts) anddirection (sequential ordering of contacts). Intriguingly, Rogler and Cortes note a gap inthe pathways research caused by the fact that most individuals/patients who participate instudies of help-seeking already have diagnoses. By leaving out the potentially large numberof individuals/patients who never in fact receive a diagnosis, we limit our knowledge of whatsorts of barriers or obstacles may prohibit obtaining a diagnosis.

This certainly has been the case for research on pathways to diagnosis in Alzheimer’sdisease. Many studies have drawn upon patient/caregiver rosters maintained at Alzheimer’sdisease research centers, from community-based medical clinics or practices, orAlzheimer’s disease support groups, and these naturally involve individuals who alreadyhave diagnoses (Boise, Morgan, Kaye, & Camicioli., 1999; Clark, Kutner, et al., 2005;Krull, 2005; Wackerbarth & Johnson, 2002). Furthermore, the normalization ofsymptoms as ‘just old-age’ (Krull, 2005) coupled with the under-diagnosis of the disease(Chodosh, Petitti et al., 2004; Valcour, Masaki, & Curb, 2000;) may well leave under theresearch radar many individuals who in fact have AD (but no diagnosis). One method ofaddressing the problem is to study individuals who identify themselves as having the kinds ofmemory and behavioral problems associated with dementia (but no diagnosis) and/orindividuals who have experienced very long pathways from recognition of symptoms tofinal diagnosis, and who, by definition, have remained undiagnosed for a long period oftime. African Americans and Hispanics are of particular interest in this regard becauseresearch suggests that they experience longer delays in diagnosis than do white people.

Although prior research has addressed the barriers and triggers of diagnosis seeking (e.g.Streams, Wackerbarth, & Maxwell, 2003; Wackerbarth & Johnson, 2002, Werner, 2003,2004), little research has addressed the repetitive events, actions, and outcomes thatcharacterize such pathways. In the spirit of the Rogler and Cortes’ (1993) article onpathways, we present results from a descriptive study that seeks to characterize theduration and direction of long vs. short pathways to diagnosis among African Americanand Hispanics.

We address the overall duration of the pathways or times-to-diagnosis, decomposed intothe lags between first notice to recognition of a pattern, recognition of a pattern to firstdoctor visit, and first doctor visit to final diagnosis. By examining long pathways inparticular, we also seek to fill a gap in the research by targeting individuals who were‘undiagnosed’ for many years. As will become evident below, long pathways-to-diagnosiscan last as long as 7�9 years.

We examine the direction of long vs. short pathways in terms of the recursive events,actions, and outcomes that characterize them. We seek to give a descriptive account thatanswers the question ‘What is going on during these lengthy periods of time?’ Whereas priorresearch has investigated reasons for these delays (e.g. access to insurance, family resources,fears of stigmatizing labels, etc), our research addresses the content of the delay, or morespecifically: the interaction between the duration and direction of long times-to-diagnosis (orongoing ‘non-diagnosis’).

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African Americans, Hispanics, and Dementia

The literature on African Americans’ and Hispanics’ experiences with Alzheimer’s diseasepoints to differences with whites in prevalence and symptom presentation. Thus, AfricanAmericans vs. whites show a higher prevalence of dementia (Heyman, Fillenbaum, et al.1991; Husaini, Sherkat et al., 2003), greater symptom severity at time of diagnosis (Dilworth-Anderson, Williams, & Gibson, 2002; Shadlen, Larson, Gibbons, McCormick, & Teri,1999), and more dementia related behaviors at moderate and late stages of the disease(Sink, Covinsky, Newcomer, & Yaffe, 2004). Hispanics vs. whites show earlier onset ofsymptoms (Clark, DeCarli, et al., 2005) and present for diagnosis with more symptoms(Ortiz, Fitten, Cummings, Hwang, & Fonseca, 2006). Taken together, greater symptomseverity than whites at time of diagnosis, and presentation at diagnosis with moresymptoms than whites, imply that both African Americans and Hispanics experiencelonger delays and possibly different pathways to diagnosis than do whites.

Multiethnic Research on the Duration of Pathways

Prior research has broken down the overall time-course from symptom recognition to finaldiagnosis into the following lags: (a) first noticing irregularities or symptoms to therecognition that these symptoms form a coherent pattern or problem; (b) recognition of aproblem to the first time the topic is brought to the attention of a physician; (c) first talk withphysician to the final medical diagnosis of the disease. Among white samples, reportedmedian lengths for these lags are: 12 months from first notice of change to recognition ofa problem, and 6 months from recognition of a problem to first consultation with aphysician (Knopman, Donohue, & Gutterman, 2000; see also Boise et al., 1999). To ourknowledge, only one study addresses time-to-diagnosis among African Americans, and nostudy is available for Hispanics. Clark, Kutner, et al. (2005) examined inter-point lagsamong African Americans with NINCDS-ADRDA clinical diagnoses of Alzheimer’sdisease recruited from two memory clinics. This study found delays of 6�9 month fromfirst notice of symptoms to recognition of a problem (with a range of one month to sevenyears), and delays of 2�3 months between caregivers’ recognizing a problem and consultinga physician (with a range of three days to four years). It is notable that the longest lagbetween first notice and recognition was seven years, and between recognition andconsulting a physician was four years. In our research, we specifically address what mightbe happening during these lengthy lags.

Multiethnic Research on the Direction of Pathways

In a study of differences among Chinese, African American, and European American groupsin pathways to diagnosis, Hinton, Franz, and Friend (2004) devised a typology offour pathways: smooth (33%), fragmented (26%), crisis events (21%), and dead-endpathways (21%).

Smooth pathways were marked by recognition of symptoms, followed by contact with aphysician or other provider, and culminating in a diagnosis. In fragmented pathways,because of some dissatisfaction with the primary contact, caregivers and patientscontacted one or more secondary healthcare providers, until they felt satisfied with thediagnosis. Crisis event pathways described the situation of patients who suffered some

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acute event (e.g. stroke, major surgery, hip fracture, etc.) and whose cognitive impairmentcame to light as a result of hospitalization. Finally, dead-end pathways were those in whichpatients never received a diagnosis, but who were in fact experiencing cognitive impairment.These latter three ‘non-cohesive’ pathways were present across all ethnic groups (Hinton,Franz, & Friend, 2004). Although the paper does not report times-to-diagnosis for eachpath, it is a likely hypothesis that the non-cohesive paths are longer than the cohesive,smooth path.

In research directly comparing African American and Hispanic caregivers’ perceptionsand experiences during the early stages of the disease, Mahoney, Cloutterbuck, Neary, &Zhan, (2005) report the following commonalities. In general, both groups were alike inattributing symptoms to old age: African Americans referred to ‘old timer’s disease,’and Hispanics used the phrase el loco (referring to craziness). Both groups traced theirrecognition of the disease back to a precipitating event (e.g. the elder’s getting lost,wandering off, not recognizing family members, having a car accident). Both groupsturned to family members and community networks. Both groups were disappointed atthe first encounter with a physician who did not immediately diagnose the disease. Inaddition, research also shows that both groups are similar in patterns of use of informaland formal support, favoring the former (Cox & Monk, 1990, 1996), and no significantdifferences between the two in caregiver burden scores (Cox & Monk, 1990). Since familycaregivers are often key agents in diagnosis-seeking, it will be important to characterize‘family caregiver functionality’ both within and across cultural groups as a factor thatmight influence the duration and/or direction of pathways to diagnosis.

The present study

In the present study we examined the duration and direction of pathways-to-diagnosisamong African Americans and Hispanics, with a particular concentration on those withvery long pathways. First, we compared African Americans and Hispanics on times-to-diagnosis, and we found no significant differences. We therefore pooled the participantsand constructed short vs. long time-to-diagnosis groups (based on a tertile split). Using datafrom a card sort interview (see below) on events, actions, and outcomes, we examined thedirection (content) of these pathways, with particular focus on the long time-to-diagnosisgroup. We used correspondence analysis of the frequencies of events, actions, and outcomesto map the pathways of both groups.

Methods

Participants

Forty-three family caregivers of 44 older adults (patients) were recruited through seniorcenters, caregiver support groups, adult day care centers, caregiver information days,newspaper advertisements, and radio announcements. Given our interest in individualswho had memory or behavioral issues associated with dementia but not necessarily aformal diagnosis, we did not concentrate recruitment in academic medical centers.Advertisements indicated that individuals were sought who were either diagnosed ashaving dementia/Alzheimer’s disease or who were suffering memory problems associatedwith AD/dementia. They were compensated $25 for their participation in the interview.

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Two patients and their caregivers were eliminated from the study because of incompletedata, and two African Americans had the same caregiver. This brought the total sample to42 patients and 41 caregivers. Of the 42 patients, 26 were African American and 16 wereHispanic. Hispanics were from Belize, Cuba, Guatemala, Honduras, Mexico, Peru, andPuerto Rico. (Since the situation of one caregiver with two patients introduces issues ofindependence of observations, analyses were run on both the full sample of 42 patients andon a restricted sample of 40 patients in which the linked patients were eliminated. Resultswere similar, and we report the results for the 42 patients). Patients were mostly women(69%), with a mean age of 79.2 years (SD¼ 9.3). Caregivers were mostly female (90%), witha mean age of 57.4 (SD¼ 12.2). Table 1 shows the demographic data on patients andcaregivers. Additional comparison of ethnic groups is presented in the results.

Demographics questionnaire

Participants completed a basic demographics questionnaire that also included items on theirrelationship to the patient (spouse, adult child, other) and a rough estimate of previousexperience with dementia/Alzheimer’s disease (none, some, a lot), and (for the patient)numbers of comorbidities, Medicare/Medicaid (yes/no), and private insurance (yes/no).

The University of University of Wisconsin Family Assessment Caregiver Scale

All participants completed the UW-FACS (Greenberg et al., 1993) which is a validated, 21question instrument, using a 5-point Likert scale designed to measure family systemprocesses in situations involving caregiving for an older adult. Family function ismeasured through five subscales: validation (support for the caregiver); family of origin(caregiver-care recipient relationship in the past); roles (caregiver tasks); problem solving(family’s ability to resolve problems associated with caregiving, including problemidentification); and boundaries (who participants in the family caregiving system). Highscores (sums) represent higher functionality.

Time-line card sort

In the research reported in this paper we used a structured, retrospective recall interview.Retrospection can be problematic and raises the issue of biases and shortfalls in memory asthreats to validity of the data (Ross, 1989; Safer and Keuler, 2002; Schrauf and Hoffman,2007). However, in a study of times-to-diagnosis among AD patients, Drebing et al. (2004)explicitly compared retrospective interviews, questionnaires, and chart review, against aconsensus time-line that was constructed from all three methods. Highest summaryagreement levels were found between the consensus key and structured interviews (77%)and the consensus key and medical records (72%). Thus, although a prospective designwould be ideal for this kind of study, the Drebing et al. (2004) research points to thereliability of the structured interview for retrospective data collection.

In addition, research on autobiographical memory demonstrates the effectiveness ofasking individuals to think about events in terms of ‘landmarks’ in their lives to anchorevents around a basic structure (Belli, 1998; Shum, 1998). Hence, in the interview procedure,we began by asking participants to think carefully about the events and timing of the fourkey ‘landmarks’ in the diagnostic pathway, and we explained these as follows:

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(1) First Notice: The first time that you (the participant) noticed or became aware of amemory or behavior change in X.

(2) Recognition: The first time that you really felt that the memory or behavior changes thatyou were seeing were a definite problem.

(3) Doctor Visit: The first time X went to the doctor because of memory or behaviorchanges.

(4) Final Diagnosis: Date of diagnosis day or interview.

We also instructed participants to think in terms of the following pattern: events occurringat the time-point ! actions taken in response to those events! outcomes of thoseactions! results. In essence, we asked: what happened, what did you do in response, andwhat happened next?

The interview was structured around a card-sort based on a set of 58 cards with events,actions, outcomes, and results pre-printed on one side, with behavioral examples on the backsides (totaling 121 across the 58 cards). The cards were developed during two prior studiesinvolving open-ended interviews with 26 African Americans and 22 whites (Iris, 2007) and 15Hispanics (Iris, Berman, & Morhardt, 2001). Some examples of events (10) included ‘X didsomething unusual, like forgetting important things, getting lost, stopped paying bills, etc.,’or ‘X was hospitalized for something and was referred for memory testing.’ Actions (14) wereresponses to events by families or caregivers; for instance, ‘I/we contacted family membersand talked about X’s memory or behavior changes,’ and ‘I/we decided to get a generalmedical evaluation.’ Outcomes (24) followed on actions. Two examples of outcomes

Table 1. Demographics for Patients and Caregivers

Total

Sample

African

Americans Hispanics

Short

Time-to-

Diagnosis

Long

Time-to-

Diagnosis

Patients, N 42 26 16 14 14

Age, M� SD 79.2 (9.3) 78.4 80.4 (8.5) 79.0 (9.5) 79.2 (7.3)

Female, % 69.0 61.5 81.2 85.7 64.2

Education, �High School graduate,% 42.8 46.1 25.0 42.8 42.8

Income, �25 K, % 73.8 69.2 81.2 71.4 64.3

Medicare/Medicaid, % 95.2 96.1 93.7 100 100

Health Insurance, % 38.0 53.8 12.5 35.7 28.6

Comorbidites, M (SD) 4.0 (1.9) 4.1 (2.0) 3.9 (1.8) 4.2 (2.4) 4.6 (1.4)

Time-to-Diagnosis, median years 4.25 4.13 4.92 1.72 9.09

Caregivers, N 41 25 16 14 14

Age, M (SD) 57.4 (12.2) 59.6 (12.0) 53.8 (11.9) 55.8 (9.7) 58.1 (14.2)

Female, % 90.2 92.0 87.5 85.7 100.0

Education, �High School graduate,% 82.9 76.0 68.7 62.5 78.6

Income, �25 K, % 53.6 52.0 56.2 64.3 50.0

Spouse of patient, % 26.8 36.0 12.5 14.3 28.6

Adult child, daughter- or son-in-law)

of patient, %

68.3 56.0 87.5 78.6 57.1

Previous experience with AD, % some

or a lot

46.3 50.0 37.5 64.2 30.0

Caregiver FACs Score* 71.9 (13.9) 70.0 (12.5) 75.0 (15.8) 71.6 (11.9) 65.1 (14.5)

*Sum score for the University of Wisconsin Family Assessment Caregiver Scale (Greenberg, 1993).

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were: ‘X would not cooperate and refused to go to the doctor,’ and ‘A doctor gave usinformation about memory problems.’ The results (10) all described some step toward, orversion of, diagnosis. Two examples are: ‘A doctor diagnosed X with a memory disorder,’and ‘No specific diagnosis was made.’

Interviews proceeded as follows. At the beginning of the interview, the investigator askedthe participant to sort out which of the 10 event cards described things that happened at oraround the first time point (i.e. First Notice of a Problem). Participants were then asked toselect which of the 14 action cards described their own or their family’s responses to theevents at that time, and then which of the 24 outcome cards were pertinent, ending with anyof the 10 result cards. After doing the card sort for the first time point, the interviewer gavethe participant a second, identical set of 58 cards, and asked the participant to select event,action, outcome, and result cards for the second time point (Recognition of a Problem). Thisprocess was repeated for the third time-point (Doctor Visit) and fourth time-point (FinalDiagnosis).

The primary advantage of this method lies in the almost exhaustive list of 179 memorytriggers (58 acts/responsesþ 121 examples) that participants use to describe their experiencesaround the four landmark moments (first notice, recognition of pattern, first doctor visit,and formal diagnosis). Indeed, as participants became more familiar with the cards, theyoften returned to prior time points to re-assign or change cards, thus correcting and revisingtheir accounts as they remembered more (Bluck & Li, 2001). The disadvantage of thismethod is that interviews can become quite lengthy. However, based on the availableresearch on autobiographical memory and current methods for eliciting, elaborating,revising, and correcting such recalls, we believe that the card sort methodology produceddefensible, veridical accounts of participant pathways. While this seems a burdensomeprocess, in fact participants figured out very quickly that many cards were only pertinentto early or later time points in the pathway and moved with ease through the interview.The card sort took between 60�90 minutes to complete.

A note on correspondence analysis

Pathways to diagnosis are inherently social processes with many actors involved innumerous interweaving, repetitive, non-linear, and recursive trajectories(events! actions! result!outcome) over time. As noted above, the card sort datarepresents this complexity and recursivity in frequency counts of 58 acts/responses basedon 121 examples across four time-points. We used correspondence analysis to model thesedata. Correspondence analysis is a method for analyzing and graphically representingfrequency data from large contingency tables (Clausen, 1998; Greenacre, 1992, 1994).Conceptually and statistically, it is akin to principal components analysis andmultidimensional scaling (Weller & Romney, 1999). Like principal components analysis itfacilitates the reduction of multiple variables to fewer, logically related ‘factors.’ Likemultidimensional scaling, it provides a graphic map in which these factors or ‘dimensions’are represented as axes, while the variables are plotted as points within this n-dimensionalspace. As with principal components analysis and multidimensional scaling, the dimensionsare then labeled or interpreted by the investigator(s). The method is primarily descriptiveand interpretive. It is appropriate for frequency or categorical data and does not assume thatdata are normally distributed.

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Given the large number of events, actions, and outcomes represented on the cards, wecombined and recoded them into a more manageable 16 behaviors and events (Table 2) andconstructed a contingency table with the 16 behaviors in the rows and the 4 time-points inthe columns. The frequencies of variables in the cells of this 4x 16 contingency table werethen converted to percentages relative to rows and columns, which made it possible tocompare the relative magnitude of cells. In the language of correspondence analysis, thiscreated 16 row profiles (each a vector of 4 numbers) and 4 column profiles (each a vector of 16numbers). Further, each row and column profile has associated with it a particular mass,which is calculated by dividing the marginal frequencies of rows and columns by the grandtotal of the frequencies in the table. Each row or total mass then represents the relativeweight of the row or column in proportion to the table as a whole. Given that the 16 rowprofiles are vectors of 4 numbers, it would be possible to represent them as points in4-dimensional space using the Pythagorean theorem and Euclidean distances. Similarly,the four column profiles could be represented in 16-dimensional space. Obviously, even ifthese representations were possible, they would not be very informative.

The goal in correspondence analysis (Clausen, 1998; Greenacre, 1992, 1994) is to reducethe numbers of dimensions necessary to graphically represent the row and column profiles(points) to either two dimensions (a map) or three dimensions (a cube) while preserving theirinter-relations. For this purpose, a weighted Euclidean distance between points, called thechi-square distance, is used to calculate a total chi-square statistic. Correspondence analysisis a method for decomposing this chi-square statistic, called inertia (or total variance), intolow dimensional solutions and for representing the profiles as points in such spaces. Therelative contribution of each dimension to the total inertia is similar to the notion of‘proportion of variance accounted for’ by factors in factor analysis and provides amathematical means for determining the relative importance of each dimension in thefinal interpretation of the map.

The task of the investigator is to interpret the meaning of each of the two dimensionsusing three pieces of information: (1) the relative placement of the points on the map; (2) therelative mathematical contribution of each point to the inertia (variance) of each dimension;and (3) the relative mathematical contribution of each dimension to the inertia (variance) ofthe total solution. In practice, this works as follows. Visually, greater inter-point distancesreflect greater contributions by points to each dimension. Thus, the first clue to the meaningof a dimension is found by examining the extreme points along the x-axis (right vs. left) andalong the y-axis (top vs. bottom). Visual inspection can be checked against the mathematicalcontributions of these points to the inertia of the dimension in question (extreme pointsmake greater contributions). Finally, the contribution of each dimension to the total inertia(variance) is a measure of the importance of one dimension versus the other.

Results

The duration of pathways: Times-to-diagnosis for African Americans vs. Hispanics

Of the 42 cases, there were five individuals (three African American, two Hispanic) that didnot have formal diagnoses at the end of the study (either from their primary care providersor specialists), but for each one there was evidence of cognitive impairment: the familymember was placed on Aricept (1); a nurse or other hospital staff mentioned Alzheimer’s’disease (2); the nursing home ordered tests for dementia (1); the doctor ordered tests bya neurologist (1). In the survival analysis used to generate medians, these five cases were

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right-censored. The median time-to-diagnosis for the whole group was about 4 years, 10months. A comparison of the two ethnic groups showed no significant differences in times-to-diagnosis: the median for African Americans (4.13 years) did not differ significantly fromHispanics (median¼ 4.92 years; Gehans’s¼ 1.03, p¼ 0.30).

Demographically, the two ethnic groups were largely equivalent as well (Table 1).Comparisons of the caregivers from the two ethnic groups � African American vs.Hispanic � showed no significant differences on age (t(39)¼ 1.5), education (Z¼ .95),income level (Z¼ .14), relationship to patient (spouse, adult child, other; Z¼ 1.07)) orprevious experience with Alzheimer’s disease (Z¼ .76). Similarly comparisons of thepatients from both ethnic groups showed no significant differences on age (t(39)¼ .65),income (Z¼ .94), numbers of comorbidities (Z¼ .26), or number receiving Medicare orMedicaid benefits (Z¼ .13). However, African American patients were more educatedthan Hispanic patients (Z¼ 2.9, p< .01), and African Americans were more likely to haveprivate health insurance (�2¼ 7.2, p< .01). Finally, we used the UW-FACS to measure the

Table 2. Categories of behaviors/actions plus examples

Code Examples from Card Sort

PtBehavior Became confused, irrational, argumentative; was taken advantage of; had driving

difficulties; stopped paying bills; had trouble with routine task; just wasn’t him/herself

PtMemory Got lost in a familiar place; became forgetful; lost things; couldn’t follow conversation;

talked about her/his own memory problems

Comments Relatives or friends made comments; neighbors or coworkers called; someone suggested

we go to the doctor; doctor noted changes

CGrealize Couldn’t explain the changes anymore; couldn’t live with the changes anymore; noticed

changes during a visit or family event

TalkFamily Asked family members if they had noticed changes

CGtakeover Took over driving, paying bills, power of attorney; started shopping or cooking for the

patient; had patient move in with us

GetInfo Went to the bookstore, Alzheimer’s Association; looked on the Web; attended a

presentation on memory loss or AD

TalkPt Suggested patient do word puzzles or reading, take vitamins, start socializing more, go to

the doctor

CGadjust Tried to be more patient; started expecting more from patient; made sure patient was not

put into uncomfortable situations

TakeDoc Took patient to his/her regular physician; went to a specialist (geriatrician, neurologist,

psychiatrist); sought mental health care

Wait Didn’t believe there was a problem; didn’t do anything; checked on patient more often;

snooped to see if patient was paying bills, taking medications, cleaning house

MedEval Doctor asked some memory questions; doctor referred patient for tests; doctor referred

patient to a specialist.

Service Advised to put patient in adult day care, in nursing home; arranged meals on wheels

Treatment Doctor prescribed medications (e.g. Aricept, Exelon; vitamin E); patient was hospitalized;

doctor told us what to expect

Prognosis Patient got better, worse, stayed the same

Diagnosis Doctor diagnosed memory disorder, dementia, Alzheimer’s disease; doctor said problems

due to a physical or psychological problem; no diagnosis was made

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functioning of families as caregiving systems. No significant differences emerged betweenAfrican Americans and Hispanics in total scores (t(40)¼ 1.13) or on any of the five subscales.Thus, no ethnic differences were seen on the validation subscale measuring the level ofsupport and acknowledgement perceived by the caregiver from his/her family(t(40)¼ 1.63), the family of origin subscale, comparing caregiver perception of the qualityof the parental or spousal relation prior to the present (t(40)¼ 2.01), the problem solvingsubscale, measuring the family’s ability to identify and collectively solve problems(t(40)¼ .91), the roles subscale, measuring the sharing of caregiving tasks byfamily members other than the primary caregiver (t(40)¼ .75), and the boundariessubscale, assessing levels of tension between family members and between generations(t(40)¼ .09).

The duration of pathways: Short vs. long time-to-diagnosis groups andthe temporal lags between time-points

Given these similarities among both African American and Hispanic groups, we pooled theirdata and used an extreme groups design to narrow the focus on the lengthiest pathways. Tothis end, we constructed three groups (short, medium, long) based on a tertile split of totaltime-to-diagnosis (from First Notice to Final Diagnosis). Median times-to-diagnosis for theextreme groups were: short group, 1 year, 9 months (range¼ 2 months to 3 years, 5 months),and long group, 9 years, 2 months (range¼ 6 years, 3.5 months to 19 years, 3 months).Interestingly, there were no demographic differences between short vs. long groups (Table 1).Comparisons of demographic data of caregivers from short vs. long groups showed nosignificant differences in age (t(25)¼ .50), education (Z¼ .41), income (Z¼ 1.33), orrelation to patient (Z¼ .61). Similarly, comparisons of patients from either group did notshow significant differences in age (t(25)¼ .07), education (Z¼ .67), income (Z¼ .72), ornumber of comorbidities (Z¼ .77). In addition, reported access to health care wasequivalent for both groups: all of the participants received either Medicare or Medicaid,and there was no significant difference in numbers of individuals with private healthinsurance plans (short group, 5/9; long group, 4/10; �2¼ .16). Nor were there significantdifferences between short and long groups on the functioning of family caregiver systems,either on total scores (T(26)¼ 1.3) or any of the subscales: validation (t(26)¼ .41), family oforigin (t(26)¼ 1.15), problem solving (t(26)¼ 1.13), roles (t(26)¼ 1.47), and boundaries(t(26)¼ .61). Family caregivers from long pathways reported more previous experiencewith dementia than did caregivers from short pathways groups, but the result did notreach statistical significance (�2¼ 3.03, p¼ .08).

Differential lengths of lags between the four time points are shown in Table 3. For allparticipants, the longest lag was between First Notice of symptoms and Recognition of thepattern as a ‘problem’: short group median¼ 7 months; long group median¼ 6 years, 4months. For both groups, durations were shorter between all subsequent time points.Roughly, however, the proportion of the total process consumed by each lag wasequivalent for short vs. long groups: First Notice to Recognition (0.56 and 0.62),Recognition to Doctor Visit (0.19 and 0.16), and Doctor Visit to Diagnosis (0.25 and0.21). However, the lengths of the lags across groups are stunningly different. The longtime-to-diagnosis group took 10 times longer than the short group to move from FirstNotice to Recognition, 5 times as long to move from Recognition to First Doctor Visit,and almost 12 times as long to move from First Doctor Visit to Final Diagnosis.

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The direction of pathways: The canonical narrative

Using frequency data from the card sort, we first present a ‘canonical narrative’ of diagnosis-seeking from the pooled data. This presents in story-format a ‘modal’ picture of thediagnosis seeking process across all participants. To construct the aggregate picture fromthe 42 participants’ actual narratives, we looked for any behavior/activity that occurred in atleast 20 percent of the cases within each time point (First Notice, Recognition, Doctor Visit,and Final Diagnosis) and constructed a composite narrative. (Because interesting themesappeared at 19 percent, we included these behaviors as well). The name ‘Ann’ is used to referto a hypothetical family member with AD (Table 4).

The frequency distribution of cards selected across the time points confirms in generalwhat we would expect on this topic. Symptom recognition and caregiver activity dominateearlier in the process and continue throughout, whereas interaction with the medicalestablishment dominates later in the process. Although memory problems are thehallmark of the disease, participants more frequently mention behavioral problems. Muchdiscussion with other family members and friends takes place early on in the process. Finally,a physician diagnosis may require several visits (or hospitalization for another condition).

The direction of pathways: The ‘short’ time-to-diagnosis group

As indicated above, we used correspondence analysis to analyze the frequency data from thecard sort and to construct maps for the short vs. long time-to-diagnosis groups. Comparinggroup maps may be done in two ways. First, we mapped a reference group (e.g. the shorttime-to-diagnosis group) and added the other group data (e.g. long time-to-diagnosis) assupplemental points to construct a map. This places all data on a single map, but isstatistically disadvantageous because the supplemental points do not contribute to theinertia (variance) of the total solution. A second method is to do separate correspondenceanalyses for each group and present both maps for visual and quantitative comparison. Wefollowed both strategies, and the quantitative and graphic results were substantially similar.For the sake of simplicity, therefore, we present separate maps for each group.

The pathways maps constructed by the correspondence analysis procedure represent theinter-relations of the four pathway time-points with the 16 events, actions, outcomes, andresults that recur over the pathway period. In both maps the first dimension (running fromleft to right along the a-axis) represents the progression across time from First Notice of aproblem, through Recognition of the Pattern and First Doctor Visit, to the Final Diagnosis.

Table 3. Median Times-to-Diagnoses in Years for Short and Long Time-to-Diagnosis Groups

Short Group Long Group

Median Min-Max Median Min-Max

First Notice to Recognition .62 (.08 � 1.91) 6.33 (1.04 � 17.39)

Recognition to First Doctor Visit .21 (.02 – 2.17) 1.52 (.21 � 4.34)

First Doctor Visit to Final Diagnosis .28 (.00 � 1.42) 3.34 (.08 � 10.34)

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This is partly the result of our having laid out the time-point cards in that order during theinterview, and partly the result of the placement of the associated behavior cards by theparticipants. For instance, participants usually (but not exclusively) assigned cardsrepresenting problems with memory with First Notice and Recognition at the beginningof the process (on the left of the x-axis) and assigned cards representing diagnosis andtreatment with Doctor Visit and Diagnosis at the end of the process (on the right side ofthe x-axis). Given this regularity in temporal sequence across groups, these four time points(the column profiles) are not shown on the maps below. Rather, to emphasize differences

Table 4. Aggregate Narrative of Diagnosis Pathway1

First Notice (Events) We noticed that Ann2 became confused, argumentative, irrational, and/or

paranoid (45%), and she became forgetful, or she forgot something important

(26%). She just wasn’t herself (24%). She stopped doing a favorite activity (21%),

and she lost or misplaced things (21%)

(Actions) So we contacted family members and talked about her memory and

behavior changes, and asked if they had noticed changes in Ann’s memory or

behavior (21%). We checked on Ann more often (21%). But we didn’t do

anything right away. We just waited (55%). We just didn’t believe there was a

problem, and so didn’t do anything (29%).

(Outcomes) Things continued as they were; Ann seemed to stay the same (29%)

Recognition (Events) Ann continued to be confused, argumentative, irrational, or paranoid

(38%) and forgetful � sometimes forgetting important things (26%). Now and

then she lost or misplaced things (26%), and she herself got lost in a familiar

place (19%)

(Actions) So we contacted family members and talked about her memory and

behavior changes (40%). We asked if they had noticed changes in Ann’s memory

or behavior (36%). Then we started checking on Ann more often (21%).

Doctor Visit (Events) Ann kept getting confused, argumentative, irrational, and/or paranoid

(19%).

(Actions) We decided to talk about Ann’s memory and/or behavior at the next

regular checkup (19%). And around that time, we took her to the doctor for a

regular visit (21%). [Or: Ann was hospitalized for another condition (19%)].

(Outcomes) The doctor asked a few memory questions (29%), and sent Ann for

further tests (e.g. CAT, MRI, EEG, blood, genetics, etc; 26%).

(Result) But at the time no specific diagnosis was made (24%). The doctor did not

diagnose or treat the memory and/or behavior changes in Ann (21%).

Final Diagnosis (Events) Ann was increasingly forgetful and forgot important things (26%).

(Outcomes) At another visit to the doctor, the doctor asked about her memory

(45%) and had her medically evaluated or tested for memory problems or brain

function (e.g. CAT, MRI, EEG, blood, genetics, etc; 62%). They prescribed medicine

specifically for memory (e.g. Aricept, Exelon, vitamin E; 45%), gave us advice for

dealing with or taking care of Ann (e.g. needs supervision, can’t live alone, can’t

drive; 45%), and they told us what to expect (38%). Ann was evaluated by a social

service provider or worker (21%).

(Result) Ann was diagnosed with a memory disorder (e.g. AD, VlD, dementia; 71%).

1Percentages represent how often this behavior was mentioned across all participants at each time point (i.e. First Notice,

Recognition, First Doctor Visit, and Final Diagnosis).2‘‘Ann’’ refers to a hypothetical family member who has been diagnosed with Alzheimer’s disease.

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between the groups in behaviors, the maps show only the configurations of actions andbehaviors (row profiles).

Again, interpreting the graphs involves looking at the dimensions that structure the dataalong the x- and y-axes on the maps. The relative importance of each dimension is signaled bythe amount of inertia (or variance-accounted-for) by that dimension in the total solution.The meaning of each dimension is constructed by the investigator via interpretation of theextreme points at the top and bottom of the graph (y-axis) and left and right of the graph(x-axis). These extreme points account for the greatest variance (i.e. highest inertia) in thedimension.

Temporal Progression in Diagnosis-Seeking (Dimension 1). For the short time-to-diagnosis group a two dimensional solution accounted for 94.5 percent of the totalinertia (�2¼ 117.1; df¼ 45; p< .001), and Figure 1 represents this solution. The firstdimension (along the x-axis) reflects temporal movement from symptom recognition tohelp-seeking to medical treatment, and it accounts for the majority of the inertia (84.5%)in the total solution. Visual inspection of the points representing behaviors and activities (therow profiles) shows that symptoms of patient behavior, the caregiver’s taking over certaininstrumental activities of daily living, and the watch-and-wait attitude of caregivers fall at the

OtherComment

PtMemory

PtBehavior

CGRealization

CGactionTalktoFamily

CGTakeOver

SeekinfoTalkwithPatient

TaketoDoctor

Watch&Wait

MedicalEvaluation

ReferraltoServicePrognosis Treatment

FinalDiagnosis

–1.0–0.50.00.51.0Dimension 1:

Temporal Progression in Diagnosis-Seeking (84.5%)

–1.0

–0.5

0.0

0.5

DIm

ensi

on

2:

Dile

mm

a o

f C

areg

iver

Dis

cern

men

t (9

.9%

)

Figure 1. Short Time to Diagnosis Group (Median time-to-diagnosis¼ 1 year, 9 months). Correspondence

analysis graph of 16 behaviors/actions (see Table 2) by caregivers, patients, social service personnel, and

clinicians in 2-dimensional space. Percentages indicate amount of variance (inertia) accounted for by each

dimension. A circle (serrated edge) has been added to highlight the dominance of the first dimension in this

pathway.

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extreme left of the graph in association with early points in the pathway. These account for27 percent of the inertia in this first dimension (14%, 5%, and 8% respectively). At theextreme right are behaviors such as receiving treatment and receiving a physician diagnosisthat are associated with later points in the process. These account for 34 percent of thevariance in this first dimension (14% and 20% respectively). Together these extremesaccount for 61 percent of the inertia in dimension 1, and in light of these we interpret thisdimension as reflecting temporal progression from symptom recognition to help-seeking tomedical treatment. The map also demonstrates a clearly marked shift in responsibilities ascaregiver recognition of a problem (points to the right of the vertical axis at 0.0) gives way tomedical diagnosis and treatment (points to the left of the axis at 0.0).

The Dilemma of Caregiver Discernment (Dimension 2). A second dimension (along they-axis) accounted for another 10 percent of the variance in this solution. Thus, despite theorder implied by the first dimension, the short time-to-diagnosis pathway is also marked bythe back-and-forth character of caregiver discernment (i.e. ‘Is it or isn’t it a problem?’, ‘Is itor isn’t it Alzheimer’s disease?’). At the top of the graph, points represent: hearing otherscomment about the patient (16%), the caregiver’s realization that something is wrong (12%)and caregiver’s talking with the family (14%). Nevertheless, at the bottom of the graph,watch and wait predominates (18%). Together these behaviors at the extreme endsaccount for 60% of the inertia in this dimension.

In sum, it is obvious that pathway is organized almost exclusively by the temporalprogression of diagnosis-seeking, and we highlight this on the map by adding a serratedoval showing the compression of behaviors stretching lengthwise along the horizontaldimension in Figure 1.

The direction of pathways: The ‘‘long’’ pathway to diagnosis group

For the long time-to-diagnosis group, three dimensions were necessary to map the relationsbetween the pathway time-points and behaviors/activities involved in the diagnostic pathway(�2¼ 70.2; df¼ 45; p< .01). The first two dimensions are shown in Figure 2.

Temporal Steps in Diagnosis-Seeking (Dimension 1). The first dimension replicates thetemporal progression in diagnosis-seeking found in the short time-to-diagnosis group, butstrikingly it accounts for about half of the total variance here (44.5%) than it did for theshort time-to-diagnosis group (84.5%). Inspection of both the placement of extreme pointsat the left and right of the graph and their percentage contribution to the first dimensionconfirms the importance of the temporal structure of the pathway. Important row profiles atearlier moments are: wait (23%) and the symptoms of patient memory (11%) and patientbehavior (14%). At later stages, referral to service (12%) and final diagnosis (17%) dominate.Collectively these account for 77% of the inertia in the first dimension.

Caregiver Management of Activities of Daily Living (Dimension 2). Whereas for the shorttime-to-diagnosis group a second dimension seemed to reflect caregivers’ puzzling throughthe normal-aging-vs.-disease dilemma, for the long group this second dimension has adifferent meaning entirely and is marked by caregivers’ assuming all or part of extendedinstrumental activities of daily living (e.g. from cooking and shopping to driving, payingbills, and even power of attorney). Thus, the relevant profiles at the top of the graph arecaregiver’s taking over key functions and talking with the family, and at the bottom of thegraph the watch and wait strategy (accounting for 13%, 19%, and 15% of this dimension).

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Thus, decreased normal functioning on the part of the patient is met by increasingadjustment on the part of the caregiver and family. We highlight this dimension on themap by adding a serrated oval showing the compression of behaviors stretchinglengthwise along the vertical dimension in Figure 2.

Getting Outside Help (Dimension 3). A third dimension accounts for almost a quarter(23.4%) of the total variance (not shown). The meaning of this dimension is less clear.Contrasting row profiles in this third dimension are, at one extreme: referrals to servicessuch as meals on wheels, adult day care, or residential long-term care (30%) and commentsby others, which would include relatives, neighbors, co-workers and/or the patient’s doctor(17%). At the other extreme is found: caregiver realization that he or she couldn’t explain orlive with the patient’s changes in behavior any more (23%). This dimension seems to reflect ashift to sources of assistance outside the home as caregivers adjust to the severity of thesituation.

In sum, although both groups showed similar progression through the steps ofrecognizing the symptoms and eventually seeking a diagnosis, the emphasis on thismovement differed markedly between them. The short time-to-diagnosis group movedswiftly to resolution (median¼ 1 year, 9 months), while exhibiting some ambivalenceabout the process, whereas the long time-to-diagnosis group moved far more slowly

OtherComment

PtMemory

PtBehavior

CGrealizationCGaction

Talk to Family

CGTakeOver

SeekInfo

TalktoPatient

TaketoDoc

Watch&Wait

MedEvaluation

ReferraltoService

Prognosis

Treatment

Diagnosis

–1.0 –0.5 0.0 0.5 1.0Dimension 1:

Temporal Progression in Diagnosis-Seeking (44.5%)

–1.0

–0.5

0.0

0.5

Dim

ensi

on

2:

Car

egiv

er M

anag

men

t o

f A

DL

's (

32.1

%)

Figure 2. Long Time-to-Diagnosis Group (Median time-to-diagnosis¼ 9 years, 2 months).

Correspondence analysis graph of 16 behaviors/actions (see Table 2) by caregivers, patients, social service

personnel, and clinicians in 2-dimensional space. Percentages indicate amount of variance (inertia) accounted

for by each dimension. A circle (serrated edge) has been added to highlight the dominance of the second

dimension in this pathway.

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(median¼ 6 years, 2 months) and exhibited a discernible pattern of caregiver assumption ofactivities of daily living and a move to recruit outside help.

Discussion

In this study we focus on the direction and duration of short vs. very long pathways-to-diagnosis in an attempt to characterize the timing and content of such pathways.Given that those who only received a diagnosis after a long period of time were bydefinition ‘undiagnosed’ throughout this lengthy period, a focus on very long pathwaysprovides some insight into the pathways of the undiagnosed as well. The literaturesuggests that African Americans and Hispanics in particular experience longer delays indiagnosis than do whites, and we have concentrated on these two ethnic groups.

An initial comparison of African Americans and Hispanics showed no significantdifference in times-to-diagnosis. Both groups took approximately 4�5 years from firstnotice of a problem to formal diagnosis. Although data on time-to-diagnosis forHispanics is not available in the literature, a 4�5 year time-span is well within the rangesreported for African samples in Clark, Kutner, et al. (2005). In our data, in fact, there waslittle difference between the groups around other factors as well. African Americans vs.Hispanics did not differ in demographics, access to health care, previous experience ofcaregivers with dementia, or numbers of patient comorbidities. Nor did they differ inscores on the family caregiver functioning scale. In sum, at least for our samples drawnfrom a large urban population, the experience of diagnosis-seeking seems equivalent acrossAfrican Americans and Hispanics.

We therefore pooled the data, and we used an extreme groups design to look morespecifically at short vs. long times-to-diagnosis. The median time-to-diagnosis for theshort group was 1 year, 9 months, and for the long group, 9 years, 2 months. Priorresearch has emphasized four cardinal time points that mark diagnosis pathways: FirstNotice of a problem, Recognition of a pattern, first Doctor Visit about the problem, andformal medical Diagnosis. Interestingly, a comparison of short vs. long showed roughly thesame proportions of time spent in each period: just over half the time was spent from FirstNotice to Recognition, and roughly a quarter of the time between Recognition and firstDoctor Visit and between first Doctor Visit and formal Diagnosis. However, the magnitudeof difference between the groups in each lag was quite remarkable. The long group took 10times as long as the short group to move from First Notice and Recognition, and 12 times aslong to move from First Doctor Visit to Diagnosis. In this regard, it is particularly strikingthat short vs. long groups did not differ in patient or caregiver age, income, patient access tohealth care, numbers of patient comorbidities, previous experience of caregivers withdementia, or scores on the caregiver family functioning scale. Whatever is driving thisdifference in the lags between time-points in these samples is not due to demographics,patient health status, access to care, or any dysfunctional dynamics in the situations ofcaregivers and patients.

Turning to the content, or direction, of the pathways, we used correspondence analysis ofthe frequency data to devise ‘maps’ of these pathways and to interpret the dimensions ofcontrast underlying the configurations of events, actions, outcomes, and results.

Both groups showed a logical progression from an early, caregiver-dominated periodmarked by recognition of symptoms and caregivers’ attempts to deal them, followed by alater, clinician-dominated period of diagnosis and treatment. For the short time-to-diagnosis

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group, this chronological structure accounted for the vast majority of variance (84.5%) inthe pathway. A second dimension reflected the classic struggle to distinguish age-associatedmemory problems and/or behaviors from actual symptoms of Alzheimer’s or otherdementias. In addition, as Figure 1 shows, the involvement of family members and othersin their social networks is also quite prominent as caregivers move toward piecing togetherthe puzzle. Nevertheless, for the short pathway group, the ambivalence accounts for onlyabout 10 percent of the variance. In essence, the short group in this study represents thesmooth pathway described by Hinton et al. (2004): recognition of symptoms, followed bycontact with the medical establishment, and culminating in a diagnosis.

In contrast, the map of the long pathway group presents a far more complex picture.Here, stepwise progression towards a diagnosis accounts for only half as much of thevariance in the pathway as it did for the short group (44.5% vs. 84.5% respectively).Nevertheless, time stretches out considerably along this pathway. Thus, a powerful seconddimension of meaning reshapes the distribution of events, actions, and outcomes. Thissecond dimension, which we have labeled ‘Caregiver Management of Activities of DailyLiving,’ accounts for almost a third of the variance (32.1%) in the total solution.Recursivity, repetition, and recurrence mark this pathway, as caregivers take overinstrumental functions such as cooking, shopping, driving, paying bills, and even powerof attorney.

A third dimension is also operative in the analysis of data from the long group. Weinterpreted this as ‘Getting outside help,’ because the major activities involved referrals tosources of help outside the home: for example, meals on wheels, adult day care, or residentiallong-term care. This dimension accounted for almost a quarter of the variance for the longpathway group (23.4%), and it may simply be complementary to the domestic scaffolding ofthe second dimension. These second and third dimensions show that caregivers and patientsare quite active, but this activity is pulled away from the seemingly inexorable march towardmedical diagnosis that marks the short pathway.

How should we interpret these findings? On one hand, the two dimensions of the shortpathways group � stepwise movement from symptom recognition to formal diagnosis andambivalence about symptoms � fit the canonical narrative. They reflect a longstanding,biomedically-framed script about illness cognition and delays in help-seeking: symptomappraisal, evaluation, and contact with the medical establishment (e.g. Cameron,Leventhal, & Leventhal, 1995; Leventhal & Diefenbach, 1991; Safer, Tharps, Jackson, &Leventhal, 1979). As noted in the introduction to this paper, the two most frequently citedexplanations for diagnostic delays in Alzheimer’s disease are normalization of symptoms andphysician under-diagnosis. That is, families often don’t seek a diagnosis and physicians oftenfail to diagnose the disease because the associated memory problems are ‘just old age’ (Krull,1995; Wackerbarth & Johnson, 2002). In addition, sometimes physicians will not order extradiagnostic tests or prescribe medicines when they know that these exceed the insurancecoverage or financial reach of family’s budgets (Hicks & Lam, 1999). This leaves somefamilies frustrated and sometimes triggers a search for ‘another opinion,’ and it leavesother families simply stymied. These are the ‘fragmented’ and ‘dead-end’ pathways ofHinton et al. (2004).

This explicitly biomedical framing, however, may not be as powerfully operative in thecase of the long pathways/undiagnosed group. In the long pathways group, the emphasis oncaregiver management of patient activities (2nd dimension) and seeking outside help (3 rd

dimension) effectively reconfigure the pathway and suggest an alternate framing of the

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disease, not from the viewpoint of clinical biomedicine, but rather from the viewpoint of thefamily and/or social network surrounding the patient. One articulation of such framing is thesocial course of chronic illness (Hicks & Lam, 1999; Kleinman et al., 1995; Ware, 1999; Ware& Kleinman, 1992), which characterizes ‘illness experience as social experience � shared,‘‘intersubjective’’ � and social course as the way the social experience of illness develops’(Ware, 1999). Thus, illness and social context are mutually interdependent. On the one hand,‘illness initiates a sequence of changes in the sufferer’s environment’ (Ware & Kleinman,1992, p. 548) while, on the other hand, ‘the fact of disability becomes a medium fornegotiating transformation in the life context’ (Ware & Kleinman, 1992, p. 548).

From the viewpoint of the social course of illness, the emphasis shifts from framing‘behaviors as symptoms of the pathological process of disease’ (which logically results in aclinical diagnosis) to ‘the behaviors as effects of the experience of illness’ (which practicallyrequire family adjustments in roles, expectations, responsibilities, and caring). Further, andperhaps more radically, a diagnosis can be a mixed blessing, and lengthy pathways maysignal an adaptive resistance. The family’s assumption of key responsibilities over a longperiod of time prior to diagnosis may be adaptive in a context where, in fact, the efficacy oftreatments is questionable and being diagnostically labeled can negatively shape how othersinteract with the patient.

The literature provides some support for such a view. Addressing the issue of decisionmaking in the social course of dementia, Hicks and Lam note that ‘symptoms are notenough’ (Hicks & Lam, 1999, p. 441), but rather that ‘work roles, schedules, and familystructures may affect the threshold of symptoms that can be tolerated by families supportingan elder at home’ (Hicks & Lam, 1999, p. 441), and that the well-being of others in the homeand the resources available within the social context also play a key role. Thus, in a study ofAfrican American, Chinese, and Latino impressions of the onset and diagnosis of dementia,Mahoney et al. (2005) note that ‘‘Among African Americans, there was a strong respect forelders that supported tolerance of behavioral deviations, and there was strong familysupport to help elderly family members’’ (Mahoney et al., 2005, p. 788), and ‘‘Latinofamily members tried not to upset the elder until safety concerns arose’’ (Mahoney et al.,2005, p. 788). Further, as noted in the introduction, research shows that both AfricanAmerican and Hispanic caregiving families ‘maintain strong feelings of filial support forthe aged and have actively involved informal support networks’ (Cox & Monk, 1990, p. 340;see also Cox & Monk, 1996).

In the end, delayed diagnoses (long pathways) and non-diagnosis may reflect ‘active’choices for dealing with the disease rather than deviance. If these interpretations areindeed correct, and of course the phenomenon deserves additional investigation, then re-framing the disease from the ‘social course of illness’ perspective (vs. the clinical biomedicalperspective) may well teach us a good deal about living with a condition that currently has nocure. In other words, families and ‘patients’ in long pathways may be sources of insight for‘caring’ vs. ‘curing.’ Moral support may be some of the most powerful medicine that healthcare professionals can offer, and increased attention to care (along with attention to cure) onthe part of the scientific community will offer considerable relief.

Conclusion

This research finds that short pathways to diagnosis are characterized by somewhat smoothmovement along a path from caregiver- and family-centered recognition of a problem,

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followed by contact with a physician and eventual diagnosis. Certainly, some ambivalenceattends the process of discernment as caregivers struggle with whether behaviors are‘normal’ or in fact ‘symptoms.’ However, this ambivalence accounts for a small portionof the variance in these pathways. Lengthy pathways follow the temporal stages from firstnotice of a problem to eventual diagnosis less smoothly, but they are marked by a greateremphasis on caregivers’ taking-over key quotidian tasks, in whole or in part, from the familymember that shows deficits in functioning. Thus, the emphasis on cognitive andaffective ambivalence about symptoms found in the short time-to-diagnosis cases shiftsin the long time-to-diagnosis cases to a kind of scaffolding in which the patient’sineffective moves seem to be met by caregiver and family mediation. Eventually, theseefforts give way to the need for, and engagement of, agencies outside the home to dealwith the situation. We suggest that what are seen as ‘delays’ from a clinical biomedicalperspective may be adaptive responses on the part of families from the viewpoint of thesocial course of dementia.

Acknowledgements

This research was supported by National Institute of Aging grant AG022177.

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Robert W. Schrauf, Ph.D. is Professor of Applied Linguistics at Pennsylvania StateUniversity in the United States. His background is in medical anthropology and cognitivepsychology, and he conducts research in three areas: cross-cultural gerontology; cognitiveaging & cognitive impairment; and multilingualism & aging. Recent publications includeLanguage Development across the Lifespan (Routledge, 2009), co-edited with Kees de Bot,and ‘A Direct Comparison of Popular Models of Normal Memory Loss and Alzheimer’sDisease in Samples of African Americans, Mexican Americans, and Refugees andImmigrants from the Former Soviet Union,’ with Madelyn Iris in Journal of the AmericanGeriatrics Society (2011). Address: Robert Schrauf, Department of Applied Linguistics, 305Sparks Building, University Park, PA 16801. [email: rws23@psu.edu]

Madelyn Iris, Ph.D., Director, Leonard Schanfield Research Institute, CJE SeniorLife hasworked for over 20 years studying topics related to Alzheimer’s Disease and diagnosis-seeking, protective services for older adults, and social service program evaluation. She isan Adjunct Associate Professor in the Departments of Psychiatry and Preventive Medicine,Feinberg School of Medicine and the Department of Anthropology, NorthwesternUniversity. Her current research focuses on factors related to time to diagnosis of AD,how family caregivers make decisions about AD diagnosis seeking, cultural and socialfactors related to beliefs about AD, as well as elder abuse and self neglect. She hasrecently published ‘The development of a conceptual model for understanding elder self-neglect’ with John Ridings and Kendon Conrad in The Gerontologist (2010). Address:Madelyn Iris, CJE SeniorLife, 3003W. Touhy, Chicago, IL 60645. [email: Micki.iris@cje.net]

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