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Correspondence: Address correspondence to Jennifer Hagerty Lingler, PhD, FNP, Department of Psychiatry, Alzheimer Disease Research Center, University of Pittsburgh School of Medicine, 121 University Place, Pittsburgh, PA 15260. E-mail: linglerjh{at}upmc.edu
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Key Words: Qualitative research • Grounded theory • Mild cognitive impairment • Illness narratives
Mild cognitive impairment generally refers to cognitive impairment that exceeds expectations for age and education level and that occurs among otherwise normally functioning older adults (Petersen, Stevens, et al., 2001). The literature suggests that the syndrome is a heterogeneous clinical state that, over time, may revert to normal, remain stable, or progress to one of several forms of dementia (for a review, see Bruscoli & Lovestone, 2004). Annual rates of conversion from mild cognitive impairment to dementia range from 2% to 31%, with an aggregate mean annual conversion rate of 10% (Bruscoli & Lovestone, 2004). Researchers have attributed the variability in findings regarding the clinical trajectory of the syndrome to between-study differences in sampling procedures (e.g., memory clinics vs community-based epidemiologic settings) and operational definitions (Ganguli, Dodge, Shen, & DeKosky, 2004).
Efforts to isolate variants of mild cognitive impairment representing distinct preclinical forms of specific dementias are in progress, as are investigations to identify robust predictors of clinical course among affected individuals. The most widely studied potential dementia precursor is amnestic mild cognitive impairment, which has, with relative consistency, been associated with progression to Alzheimer's disease. Amnestic impairment involves (a) a memory complaint, (b) abnormal scores on formal memory tests, (c) normal general mental status, (d) normal daily functioning, and (e) the absence of dementia (Petersen, 2000). Researchers have also linked such physiological factors as hippocampal atrophy and the presence of an apoE4 allele to more rapid conversion to Alzheimer's disease among those with the amnestic form of mild cognitive impairment (Jack et al., 2000; Korf, Wahlund, Visser, & Scheltens, 2004; Petersen et al., 1995).
In addition to this line of research, the literature reveals both empirically and ethically based arguments that suggest the need for caution in treating mild cognitive impairment as a clinical diagnosis. Critics of the concept concede that normal older adults who are experiencing changes in memory function are at elevated risk for the development of dementia, but they also argue that the mild cognitive impairment category has poor predictive validity in the general population and/or that its inefficiency serves only to obscure efforts to reliably identify incipient dementia (Ritchie, Artero, & Touchon, 2001). Others have argued against the classification on the basis of research suggesting that those who meet diagnostic criteria for the syndrome actually have Alzheimer's disease pathology (Morris et al., 2001).
Ethical commentary about mild cognitive impairment is tied to concerns regarding the trend toward medicalizing normal aging processes. In reference to the syndrome, geriatrician and ethicist Whitehouse (2001) posed to dementia researchers the following question: "How much do we have to pathologize aging with the clinical gaze?" He has advocated for balance in attending to cognitive changes affecting older adults. However, the details of striking such a balance remain unarticulated.
There may be benefits to being diagnosed with the clinical suspicion of incipient dementia. Such knowledge may, for example, afford one the opportunity to conduct legal or personal planning for the future. Yet there are potentially negative consequences that merit consideration. Individuals diagnosed with mild cognitive impairment may be considered at risk for high utilization of long-term-care resources, impacting their insurability. In addition, there may be intra- and interpersonal consequences of being labeled as cognitively impaired.
One way to better understand the experiential implications of being diagnosed with mild cognitive impairment is to inquire about the patient's subjective experience of such a diagnosis. Yet research on the personal impact of receiving a diagnosis of mild cognitive impairment is scant. A literature review revealed one published abstract and one article that described various personal reactions to a diagnosis. Moody and Whitehouse (2003) presented four cases in order to illustrate the ethical dilemmas posed by treating mild cognitive impairment as a clinical diagnosis. These cases included individuals who responded to a diagnosis with denial and severe depression, as well as two who held frank misunderstandings about mild cognitive impairment. Frank and colleagues (2006) used a focus-group approach in order to identify key aspects of mild cognitive impairment and early Alzheimer's disease for the purpose of developing patient-based outcome measures for use in clinical trials research. Their focus-group analysis provided a broad overview of the mild cognitive impairment and early Alzheimer's symptom experience and its impact on functioning. Like Moody and Whitehouse, these researchers reported that participants voiced confusion around the mild cognitive impairment diagnosis with inconsistent mention of the possibility of progression to Alzheimer's disease among those affected. In order to expand upon these findings, we undertook a qualitative study to better understand, from the patient's point of view, the experience of living with a diagnosis of mild cognitive impairment. This article focuses on responses to a subset of open-ended questions that specifically targeted the process of making sense of a diagnosis of mild cognitive impairment.
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We invited individuals with mild cognitive impairment to participate in in-depth, semistructured interviews within 3 to 6 months of receiving a diagnosis of the syndrome. We selected a 3–6-month post-diagnostic timeframe because we aimed to explore the experience of living with (as opposed to initially reacting to) knowledge of one's diagnosis. We established the 6-month boundary in order to minimize the possibility of interviewing individuals who had progressed to a state of clinical dementia.
Participants
We recruited participants from a cohort of patients at the University of Pittsburgh Alzheimer Disease Research Center (ADRC). Prior to being approached regarding the current study, participants underwent comprehensive multidisciplinary evaluations and, along with their families, participated in a formal clinical feedback session according to the ADRC protocol. The details of the multidisciplinary evaluation and criteria for enrollment into the ADRC registry have been described previously (Lopez et al., 2000). One of three neurologists, together with one of four social workers, conducted diagnostic feedback sessions. The basic content of the feedback sessions was standardized to include diagnostic disclosure following the presentation of findings from the physical and neurological examination, laboratory studies, neuroimaging studies, and neuropsychological testing. For the purpose of the current study, we did not manipulate, observe, or analyze feedback sessions.
An ADRC diagnosis of amnestic mild cognitive impairment required objectively verified memory deficits, defined as performance greater than 1.5 standard deviation units below that of individuals of comparable age and education, with otherwise normal cognitive function (Lopez et al., 2003). Such impairment must have been present upon administration of standardized tests of delayed recall verbal memory, nonverbal memory, or both. Nonamnestic mild cognitive impairment (or mild cognitive impairment—multiple cognitive domain) required (a) deterioration in at least one cognitive domain (not including memory) without sufficiently severe cognitive impairment or loss of daily living skills to constitute dementia, or (b) two abnormal tests in two different domains (Lopez et al., 2003). As with amnestic mild cognitive impairment, the criteria defined the neuropsychological deficits as scores 1.5 standard deviation units below that of individuals of comparable age and education.
Recruitment began within a convenience sample of older adults who (a) carried an ADRC registry diagnosis of either amnestic or nonamnestic mild cognitive impairment, (b) were older than age 65, (c) were community dwelling, and (d) were willing to participate as indicated by completion of the informed consent document. ADRC enrollment criteria required the exclusion of medically unstable individuals as well as those with severe, untreated psychiatric disorders. In addition, we excluded residents of assisted living or skilled nursing facilities from this study. As the iterative processes of data collection and analysis progressed, we implemented purposeful selection in order to ensure the representation of a range of personal experiences (e.g., varied marital statuses and diverse occupational backgrounds) in the narrative data (Kuzel, 1992). Qualitative studies widely use this sampling technique in order to increase the likelihood of characterizing the diversity of personal experiences within a given population; in this case, community-dwelling older adults with a consensus-based diagnosis of mild cognitive impairment.
Procedure
With the approval of the University of Pittsburgh Institutional Review Board, we identified potential participants from the ADRC database and invited them to volunteer for the study. We procured written informed consent from all participants. Either a master's-prepared social worker or a doctorally prepared nurse practitioner, both with extensive experience with interviewing cognitively impaired populations, conducted semistructured interviews that ranged in length from 45 to 60 minutes. In order to promote a nonthreatening data collection environment, we conducted all interviews in participants' homes. We advised family members of participants in advance that if they were at home during the interview, they would be asked to vacate the room during the interview to ensure participant's privacy. Prior to the start of the interview, interviewers engaged participants in casual conversations in order to build rapport and put them at ease. At the start of each interview, interviewers reminded participants of the confidential nature of the study and the measures in place in order to preserve confidentiality. In order to create a safe environment for participants who held negative perspectives of the diagnostic process, we ensured that the clinician researcher who was conducting the interview had not been involved in the participant's initial ADRC evaluation or diagnostic disclosure session. Because we aimed to elicit participants' own perceptions of living with mild cognitive impairment, interviewers made a concerted effort to exercise self-reflexivity and avoid transferring their assumptions about mild cognitive impairment to respondents (Elder & Miller, 1995). Additionally, the interviewers deferred participants' questions about mild cognitive impairment until after the interview, at which point they answered general questions about the syndrome and referred case-specific questions back to the appropriate clinicians. Interviewers carefully explained the rationale for this to study participants at the outset of the interview.
Reflecting the aims of our larger study of living with mild cognitive impairment, we designed the interview guide to elicit rich descriptions of the perceived impact of the diagnosis on daily life, interpersonal relationships, and futuristic thinking. The guide consisted of 20 open-ended questions with instructions for probing, validating, and transitioning between topics. As recommended by Patton (1987), we designed interview questions to be open ended, neutral, sensitive, and clear. The questions from which the current data are derived reflected our intention to establish a context for each interview by engaging the respondent in an initial discussion of what mild cognitive impairment meant to them. We undertook the current analysis when a review of narrative responses to questions such as "What does the diagnosis of mild cognitive impairment mean to you?" revealed a rich set of data that merited a focused analysis of the process of coming to terms with the diagnosis. Indeed, a widely recognized strength of qualitative interviewing techniques is the potential to uncover new areas or ideas that were not anticipated at the outset of the research (Britten, 1995). The current study exemplifies this phenomenon. As we proceeded with the analysis of making sense of mild cognitive impairment, we scrutinized each interview in its entirety in order to identify additional data for inclusion in the analysis. For example, some questions that appeared later in the course of the interview (e.g., "In what way, if any, has your outlook for the future been changed by this diagnosis?") generated data that were especially relevant to the current analysis.
We audiorecorded all interviews and transcribed them verbatim. Interviewers checked transcriptions for accuracy. We generated field notes to provide a context for each encounter (including, for example, descriptions of the participant's nonverbal behaviors and the interview environment). With the participant's consent and institutional review board approval, we abstracted demographic and clinical (e.g., medical, psychiatric, and neuropsychological) data from the Memory Disorders Clinic patient records and ADRC database in a manner compliant with the Health Insurance Portability and Accountability Act of 1996.
Analytic Approach
Our analysis encompassed the concurrent processes of collecting, coding, categorizing, and interpreting interview data and field notes (Strauss & Corbin, 1990). First, two researchers (a doctorally prepared nurse practitioner and a medical anthropologist) coded transcribed text and field notes line by line by inserting notations in the margins of the data forms. This initial coding involved assigning tags or descriptive labels to units of data. As explained by Miles and Huberman (1994), units of data for qualitative analysis are phrases, sentences, or paragraphs containing the smallest amount of information that is itself informative. For example, the phrase "glad it was nothing serious" was first coded as a relief statement. As we discerned patterns within the data, we clustered codes and examined them for their defining characteristics and range of variations. This iteration of coding involved returning to the initial, provisional codes in order to ascertain the fit of each line-by-line label with the categories that were being identified and operationally defined. During this process, we grouped relief statements, like the one quoted here, with expressions of satisfaction and other positive meaning statements to compose the category positive emotional appraisal. The iterative procedures recommended by Hall, Long, Bermbach, Jordan, and Patterson (2005) guided the conduct of team meetings to discuss data collection, coding, and analysis. Discussions between the coders and other members of the multidisciplinary research team continued until consensus was reached. We maintained an audit trail in order to track decisions around coding rules. Finally, we proposed themes, analyzed relationships among categories by using matrix displays, and identified broader conceptualizations. Consistent with the principle of theoretical saturation (Glaser, 1978), data collection continued until scrutiny of incoming interviews of participants with varying personal characteristics revealed that the properties of, and relationships among, our categories were well established and that no new patterns were emerging.
In order to enhance our theoretical sensitivity, we discussed our findings with a diverse group of social and health science coinvestigators, including representatives from the disciplines of nursing, social work, anthropology, psychology, neurology, and geriatric psychiatry. This process increased our reflexivity by promoting a discussion of competing explanations for our emerging findings, which ultimately resulted in a sharpening of our conceptual structures (Barry, Britten, Barber, Bradley, & Stevenson, 1999).
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For the other older adults in our sample, assigning meaning constituted a fundamental aspect of living with a diagnosis of mild cognitive impairment and was composed of interrelated emotional and cognitive dimensions. Our analysis revealed three key contextual factors that were influential in shaping perceptions of meaning within the sample. These were expectations of normal cognitive aging, personal experience with dementia, and concurrent health problems.
Emotional Dimension of Assigning Meaning
Participants employed a range of positive (n = 5), neutral (n = 4), and negative (n = 2) phrasing to depict their emotional reactions to receiving a diagnosis of mild cognitive impairment. "Wonderful," "glad," "good," and "happy," were among the positive terms used to convey perceptions of the meaning of a diagnosis. Participants repeatedly qualified positively framed reactions to the diagnosis as being accompanied by feelings of relief and/or satisfaction. Examination of the narrative accounts revealed that feelings of relief typically emerged within the context of a looming Alzheimer's disease diagnosis. Thus, for relieved individuals, the meaning assigned to mild cognitive impairment was entangled within perceptions of the concomitant absence of a dementia diagnosis. Participants conveyed such perceptions through explicit talk of relative relief as well as through the use of metaphorical phrasing. Less commonly, connotations of relief surfaced as participants contrasted mild cognitive impairment with potentially life-threatening medical conditions. The following is an example of this phenomenon:
Well, to be quite honest, I think I was relieved. I knew that I had a problem. I was concerned probably like everyone would [be], that I had Alzheimer's, and then he [the neurologist] said, "You don't have Alzheimer's," and you know that's like taking a cloud off your shoulder ... So I knew I had the problem, so giving it a title, you can call it anything you want, but it's not Alzheimer's, so I can live with it ... . It's a lot better than having lung cancer. (Case 1, a 65-year-old man with amnestic type)
Other participants derived satisfaction in finding professional validation of the symptoms that they were experiencing. For this group, putting a name to the syndrome was perceived as comforting. Case 2, a 74-year-old man with nonamnestic type, said, "Oh, I feel that it's a good thing to ... to try to get some result for what the heck is going on and why." The man replied "absolutely" when the interviewer clarified his statement as follows: "So having [or rather] knowing that there is a name for this, makes you feel better than not having anything to call it?"
Neutral reactions were characterized by reports of feeling "just fine" about being diagnosed with the syndrome or by the provision of matter-of-fact responses to inquiries regarding felt reactions to the diagnosis. We frequently observed reactions of this nature among the women in our sample. Like positively framed reactions, neutral reactions were often qualified in terms of participants' prediagnostic awareness of changes in cognitive functioning. However, in stark contrast to individuals expressing relief, neutral reactors usually did not refer to dementia. Case 7, an 81-year-old woman with amnestic type, said, "It didn't make me feel too bad because I knew, you know, that there were things that maybe I was having trouble with." Case 8, an 82-year-old man with nonamnestic type, stated, "It's just a matter of putting a name on the condition I was aware of."
Less frequently, participants expressed feelings of fear or distress in their narrative accounts of assigning meaning to a diagnosis of mild cognitive impairment. Like the perceptions of relief described previously, these negative feelings emerged within the context of a looming dementia diagnosis. "It was ... scary because I think it could lead to Alzheimer's," said Case 3, a 79-year-old man with amnestic type.
Cognitive Dimension of Assigning Meaning
Participants further framed personal constructions of the meaning of a diagnosis of mild cognitive impairment in terms of face-value and prognosis-focused cognitive appraisals. Face-value appraisals of having the syndrome surfaced among participants who found the phrase "mild cognitive impairment" to function as a fitting descriptor of the everyday experience of memory loss. In addition to being symptom focused, such accounts were typically characterized by an orientation toward the present. One participant who held a face-value appraisal responded as follows when asked to explain what a diagnosis of mild cognitive impairment meant to him:
I'll remember that [my wife] told me that she was going out, but I won't remember with who or where she was going... . They're [the diagnosticians] telling me that I can't remember things, and I already know that. (Case 1)
Another participant who held a face-value appraisal said that the diagnosis meant that "It's just that ... I just don't remember everything [chuckles] that I, you know ... maybe I should, I don't know" (Case 7).
By contrast, a prognosis-focused participant said, "MCI to me means that it would lead to AD [Alzheimer's disease]" (Case 3). References to uncertainty and apprehension regarding the future were frequently embedded within prognosis-focused appraisals: "It means I have a problem and I don't ... know whether it ... will continue to generate or whether it can be turned around" (Case 8). And, "I don't want to get to the point where I don't remember my own daughter's name" (Case 1). Similarly, prognosis-focused reactions sometimes implied perceptions of powerlessness, as demonstrated by the following quotation from an individual who personified the syndrome as having power, intention, and unpredictability: "It can change, I guess ... anytime ... anytime it wants to" (Case 4, an 86-year-old man with amnestic type).
Emotional and Cognitive Dimensions as Interrelated
We discerned several patterns of connection between the emotional and cognitive dimensions of meaning assignment. For example, neutral reactors typically held face-value appraisals. Fearful reactors were prognosis focused, as evidenced by the aforementioned quote from Case 3 (i.e., "It was ... scary because I think it could lead to Alzheimer's"). We noted the widest variation in cognitive appraisal profiles among those who expressed feelings of relief or satisfaction. For some participants, a current emotional state of relief was held in tension with an uncertain prognosis:
Well since he said mild, that, that sort of gave me some relief there, that maybe my ... it's not all that serious and maybe I can get improvement on although they did say there's no way you can improve it, it's just a matter of living with it ... . Hopefully it's going to get worse; not hopefully, but possibly it will. (Case 5, a 78-year-old man with nonamnestic type)
Less often, participants interpreted the diagnosis to represent an explicit ruling out of dementia. For example, 1 participant with amnestic type mild cognitive impairment reported having been worried about the possibility of developing dementia prior to receiving this diagnosis but stated, "As it turned out, why, that was a great relief and ... . so I haven't worried since."
Perceived Implications for the Future
Interviewers asked both face-value and prognosis-focused participants to describe how having a diagnosis of mild cognitive impairment had impacted their outlook for the future. Responses to such questions ranged to include both marginal ("I don't worry about it") and marked ("[I] haven't made definite plans of going into a home") expressions of concern. Participants who related higher degrees of concern regarding the future described the conduct of planning activities. A 78-year-old married man explained multiple attempts to teach his wife to manage the household finances. A 74-year-old participant who expressed satisfaction and contentment with his diagnosis reflected as follows when asked how having the diagnosis had changed his thoughts of the future:
... just the realization that we're getting older ... . I savor the things that are all around us. I enjoy them. I enjoy seeing the sun come up, and go down when I go to bed. And, I watch the moon a lot ... . I wish I could just slow things down.
Contextual Factors
Participants' perceptions regarding meaning assignment in general or implications for the future in particular did not appear to vary as a function of diagnostic type. Furthermore, scrutiny of the narratives revealed only sporadic references to health care professionals as a source of information about mild cognitive impairment. Rather, personal constructions of the meaning of a diagnosis arose within the context of three main factors: expectations of normal aging, presence or history of dementia within one's family or social network, and concurrent medical diagnoses.
Expectations of Normal Aging
Half of those who positively framed their emotional appraisals of the diagnosis—and all but 1 of the neutral appraisers—perceived mild cognitive impairment to be an expected aspect of the aging process. Distressed appraisers, in contrast, did not engage in such normalizations of the syndrome.
Personal Exposure to Individuals With Dementia
Four participants described personal experiences with dementia-affected individuals. Although not a pervasive theme in our analysis, when present personal experiences with dementia profoundly impacted participants' perceptions of living with mild cognitive impairment. For example, describing his personal experiences with Alzheimer's disease (parent) and dementia with Lewy bodies (sibling) as a "hell of a thing," a distressed appraiser conveyed the perception that his symptoms would inevitably progress to dementia.
Concurrent Health Problems
Although comprehensive dementia evaluations had, for all participants, ruled out the clinical possibility of cognitive impairment due to a general medical condition, references to concurrent health problems permeated participants' narrative accounts of living with a diagnosis of mild cognitive impairment. References to concurrent conditions ranged to include the attribution of changes in functional status to musculoskeletal problems, chronic fatigue syndrome, eye disease, bereavement, and general physical slowing. Talk of concurrent health conditions appeared to serve varying purposes for the participants in our sample. For some individuals, alterations in physical health provided a rational explanation for mild changes in functioning that were occurring at either the community or household level. In other cases, mention of concurrent illnesses served to establish a context for the distinct, but relative, impact of mild cognitive impairment on daily life. As such, 6 individuals regarded the diagnosis of mild cognitive impairment to represent just one condition co-occurring with a host of other chronic health problems. Neither of the 2 participants who had been diagnosed by ADRC psychiatrists with mood disorders directly spoke of their affective diagnoses. However, the individuals with anxiety NOS and depression NOS conveyed distressed and neutral emotional appraisals, respectively, suggesting that their affective states may indeed have played a role in the process of meaning assignment.
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Illness Representation Theory
Although our theoretical approach was inductive in nature, it is important to consider the emergent theory in light of previous work on creating meaning in the context of chronic illness. Specifically, our main finding of interrelated emotional and cognitive dimensions of meaning assignment can be advanced by consideration of the construct illness representation, which some researchers hypothesize precedes and informs the coping and appraisal stages of illness construction (Leventhal, Nerenz, & Steele, 1984). Leventhal and colleagues defined illness representation as an individual's common-sense portrayal of their health problem(s) arranged as a coherent system involving identity, timeline, consequences, cause, control, illness coherence, and emotional representations (Leventhal, Diefenbach, & Leventhal, 1992). Under this framework, both cognitive and emotional processes influence one's mental image of an illness or a threat of illness. Our core finding of active engagement in the cognitive and emotional processing of a diagnosis of mild cognitive impairment offers cross-validation for Leventhal and colleagues' fundamental assertion that threats to one's health—like symptoms or diagnostic feedback—bring about such mental representations of illness. Table 2 provides a provisional explanation of the applicability of each dimension of illness representation theory in the context of mild cognitive impairment.
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Leventhal and colleagues' hypothesis that illness representation has important implications for how individuals conceptualize and cope with their condition finds support from investigations linking the construct to decisions to seek health care and adhere to health recommendations, as well as to functional health outcomes, across a range of chronic disorders (Coutu, Dupuis, D'Antono, & Rochon-Goyer, 2003; Hampson, Glasgow, & Toobert, 1990; Lacroix, Martin, Avendano, & Goldstein, 1991; Leventhal et al., 1992; Meyer, Leventhal, & Gutmann, 1985). Although the current study did not allow us to relate illness representation to health behaviors, the fit of our findings with illness representation theory suggests the need for future research in this area. Formal evaluations of the structure, correlates, and consequences of illness representation in mild cognitive impairment will become increasingly important as pharmacotherapies targeting the syndrome emerge and gain regulatory approval. However, such evaluations will need to consider the complexity of illness representation in the context of a syndrome like mild cognitive impairment, wherein the illness trajectory is uncertain, the impact on basic daily functioning is minimal, efficacious treatments remain elusive, and affected individuals are likely to be experiencing any number of additional threats to well-being.
Influence of Personal Experience, Concurrent Health Conditions, and Expectations of Aging
The factors that we identified as influencing meaning assignment in mild cognitive impairment have varying fit with previous work on illness representation. For example, Heijmans and de Ridder (1998) argued that illness representations are, by nature, disease specific. Yet we found that mild cognitive impairment is subjectively processed in the context of other health problems. The possibility that illness representations are less discretely defined when multiple chronic conditions (especially those that only minimally impact basic daily functioning) are present deserves further exploration at both the theoretical and empirical levels.
Perhaps related to this is the fact that our analysis suggested that expectations of normal aging play a pivotal role in assigning meaning to a diagnosis of mild cognitive impairment. Leventhal and colleagues' dimensions of controllability and causality may be particularly influenced by such cognitive constructions. Moreover, previous studies using various methodologies have found older adults to perceive memory loss as an inevitable consequence of growing old (Hinton & Levkoff, 1999; Mahoney, Cloutterbuck, Neary, & Zhan, 2005). Although researchers have hypothesized such normalizations of memory loss to yield delays in presentation for dementia evaluations (Knopman, Donohue, & Gutterman, 2000), we nevertheless detected the perception of "memory loss as normal" within our sample of individuals who had both undergone clinical evaluations and participated in formal diagnostic sessions in which they were told that their symptoms exceeded expectations for normal aging. This finding suggests that such perceptions may be especially pervasive among older adults.
Finally, our finding that personal experience with other common disorders of cognitive dysfunction, namely dementia, shapes one's perception of the meaning of mild cognitive impairment finds support in studies of illness representation in chronic disease. For example, Decruyenaere, Evers-Kiebooms, Welkenhuysen, Denayer, and Claes's (2000) review of cognitive representations of breast cancer suggested that both personal familiarity with, and family history of, an illness may contribute to one's perception of susceptibility to that illness.
Role of Insight
A small group of studies have documented varying insight levels among individuals with mild cognitive impairment (Ready, Ott, & Grace, 2004; Vogel et al., 2004). For this study, we assumed that individuals with mild cognitive impairment held authentic perceptions of their illness experiences and that those perceptions could be reliably elicited by interview. With the exception of 1 individual who expressed a belief that she had been diagnosed with Alzheimer's disease, each of our participants expressed insight, albeit in varying degrees, into their diagnoses. For those who expressed an underappreciation of the possibility of impending progression to clinical dementia, it is unclear the extent to which impairments in insight, recall, language, or other cognitive processes may have adversely influenced their impressions. Similar concerns apply to those who interpreted mild cognitive impairment to imply inevitable progression to dementia.
Conclusions
Individuals with mild cognitive impairment assign a diverse range of meanings to their diagnosis—from equating the syndrome with Alzheimer's disease to interpreting mild cognitive impairment as a ruling out of dementia—and are at risk for both over- and underestimating the significance of their diagnoses. In practice, misconceptions about mild cognitive impairment hold potential to impede the process of informed decision making among affected individuals. Clinicians who disclose diagnoses of mild cognitive impairment should be mindful of the potential for varying interpretations of the information that they are conveying. Future research needs to include systematic, longitudinal investigations of illness representation and its impact on health behaviors (such as planning for future states of decisional incapacity or returning for follow-up cognitive testing) among individuals with mild cognitive impairment.
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Marie C. Nightingale, PhD is no longer affiliated with the University of Pittsburgh. 
1 Department of Psychiatry, University of Pittsburgh School of Medicine, PA.
2 Alzheimer Disease Research Center, University of Pittsburgh, PA.
3 Graduate School of Public Health, University of Pittsburgh, PA.
4 University of Pittsburgh School of Nursing, Pittsburgh, PA.
5 Advanced Center for Intervention Services Research/Late Life Mood Disorders, Western Psychiatric Institute and Clinic, Pittsburgh, PA.
6 University Center for Social and Urban Research, Pittsburgh, PA.
7 Department of Neurology, University of Pittsburgh School of Medicine, PA.
Decision Editor: Linda S. Noelker, PhD
Received for publication January 16, 2006. Accepted for publication August 9, 2006.
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