Sociology of Health & Illness Vol. 35 No. 1 2013 ISSN 0141–9889, pp. 130–146
doi: 10.1111/j.1467-9566.2012.01481.x
Making sense of nonsense: experiences of mild cognitive
impairment
Renée L. Beard and Tara M. Neary
Department of Sociology and Anthropology, College of the Holy Cross, Worcester MA,
United States
Abstract
Alzheimer’s disease (AD) is a stigmatised condition popularly assumed to be a
death sentence for diagnosed individuals. Consequently, people with AD are
often deemed incapable (and perhaps unworthy) of contributing to the social
discourse surrounding their illness experience. Data from qualitative interviews
with 18 people diagnosed with the potential precursor of AD known as mild
cognitive impairment (MCI) are examined. Using grounded theory methods,
analysis revealed overarching themes of uncertainty concerning definitions of
memory loss, MCI, and AD as well as distinctions between normal ageing and
dementia. While this confusion over the terminology and prognosis mirrors the
lack of scientific consensus about nosology and appropriate treatment regimens,
such ambiguity creates social and psychological tensions for diagnosed
individuals. Arguably, participants’ unequivocal fear of and subsequent desire to
differentiate their experiences from Alzheimer’s, however, stems from the
exclusively negative social constructions of AD. Drawing from Goffman, these
findings demonstrate the psychosocial impact of ‘framing contests’ and how
‘courtesy stigma’ can apply not only to associated persons but also associated
conditions, such as MCI to AD. Given the underlying nosological creep – or
medicalisation – of the recent diagnostic guidelines proposing two new predementia stages, understanding the illness narratives of MCI is critical.
Keywords: mild cognitive impairment, Alzheimer’s, illness narratives, clinical uncertainty
Introduction
In April 2011 the US National Institute of Aging and Alzheimer’s Association released new
diagnostic guidelines for Alzheimer’s disease (AD). In contrast to the original criteria
developed over a quarter of a century ago, the revised diagnostic and research standards
posit a continuum of AD that extends the medical gaze to include two new phases prior to
Alzheimer’s. Clinically, the new classification includes the dementia phase (AD), the
symptomatic, pre-dementia phase known as mild cognitive impairment (MCI) and an
asymptomatic, preclinical phase (Jack et al. 2011). For the past 20 years MCI was considered
merely a potential precursor and while diagnosed individuals scored below average for their
age and education on neuropsychological tests, they did not have an impairment in daily
living and were not necessarily expected to convert to AD. The new criteria inflate the
already soaring numbers of seniors experiencing ‘memory problems’ in a ‘hypercognitive’
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Sense-making in mild cognitive impairment experiences
131
society where cognition and rational thinking are ascribed paramount importance (Post
1995, 2000). Furthermore, highly medicalised and narrow depictions of Alzheimer’s lead to
stigmatisation as the condition is assumed to be a death sentence. Despite empirical
documentation that individuals so diagnosed remain engaged in life (Cohen-Mansfield et al.
2000, Li and Orleans 2002, Wilkinson 2001) and, indeed, report positive aspects to living with
dementia (Beard 2004a, Beard and Fox 2008, Harris 2009, Holst and Hallberg 2003, Kramer
1997), people with Alzheimer’s are often deemed incapable (and perhaps unworthy) of
contributing to the social discourse on their condition or even narrating their own experience
of illness. Constructions of individuals with Alzheimer’s as ‘the living dead’ (Aquilina and
Hughes 2006) and ‘zombies’ (Behuniak 2011) both reflect and reinforce this marginalisation.
The new diagnostic guidelines expand dementia to include cognitive disorders previously
defined as typical of ageing and a potentially very lengthy asymptomatic phase (Gaines and
Whitehouse 2006, Purser et al. 2006, Whitehouse and Moody 2006). The origin of MCI has
been traced to Kral’s (1962) term ‘benign senescent forgetfulness’. In 1993 the International
Classification of Diseases (World Health Organization 1993) listed ‘mild cognitive disorder’
and a year later the Diagnostic and Statistical Manual (American Psychiatric Association
1994) cited ‘mild neurocognitive decline’. In 1997 both ‘cognitive impairment no dementia’
and ‘mild cognitive impairment’ entered the discourse in psychiatry and neurology (Graham
et al. 1997, Petersen et al. 1997, respectively). Currently, MCI is most widely accepted among
medical practitioners to describe the decline in cognitive function that is detected in nondemented people. Clinicians have also identified numerous subtypes of MCI, with amnestic
MCI (impairment based predominantly on memory-related symptoms) deemed to be most
likely to progress to Alzheimer’s (Petersen 2004).
Significant dissent, however, regarding the conceptual basis, the diagnostic algorithms and
the relationship between MCI and similar concepts persists (Corner and Bond 2006, Graham
and Ritchie 2006, Ritchie and Touchon 2000). This is in part because rates of conversion
from MCI to AD vary drastically, with studies reporting as little as 9.6 per cent over 22 years
(Elias et al. 2001) and as much as 100 per cent in 4.5 years (Krasuski et al. 1998).
Furthermore, research suggests that the same number of MCI cases convert back to normal
as they do to AD (Daly et al. 2001) and a general instability across time, with as much as 40
per cent reverting to normal (Ritchie and Touchon 2000). The potential implication of such
predictive imprecision for MCI (Corner and Bond 2006) includes direct psychosocial costs to
individuals diagnosed with MCI and their family members as well as the indirect
consequences for all of us as we age.
Despite these controversies, an enormous amount of scientific attention and federal funds
have been directed to the recent discovery of this Alzheimer’s prodrome. Although many
consider it a potential precursor to AD, others argue that it has clinical utility only and warn
of the possible psychosocial consequences of diagnosing the condition. As a result, how to
diagnosis MCI – if at all – remains heavily debated among neurologists, geriatricians,
neuropsychiatrists, general practitioners and bioethicists (Corner and Bond 2006, Gaines and
Whitehouse 2006, Graham and Ritchie 2006). Some critical scholars suggest that the
condition demonstrates a ‘hardening of the categories’ (Whitehouse and Moody 2006) and
threatens a spoiled identity (Goffman 1963) for those diagnosed (Corner and Bond 2006),
resulting in the further medicalisation of ageing. Framed in this way, dementia becomes a
spectrum disorder representing an incisive example of diagnostic expansion (Conrad 2007).
Like attention-deficit hyperactivity disorder, erectile dysfunction and, most recently, autism,
the clinical constructions of Alzheimer’s create an ‘us ⁄ them’ dynamic between the everincreasing ranks of forgetful seniors and everyone else.
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Renée L. Beard and Tara M. Neary
In practice, distinguishing between normal cognitive ageing, MCI and the early stages of
degenerative dementias such as Alzheimer’s remains an enormous challenge (Graham and
Ritchie 2006, Whitehouse and Moody 2006). Since neuropsychological testing is a poor
indicator of MCI, clinical judgment plays a central role in diagnosis (Corner and Bond 2006).
The clinical and aetiological heterogeneity of MCI is further complicated by a lack of evidence
supporting the notion that early treatment or intervention is beneficial for managing decline
or even for improving quality of life (Whitehouse and George 2008, Whitehouse and Moody
2006, Winbald et al. 2004). While early detection and diagnosis may allow planning for the
future or starting a specific drug regimen, the potential consequences of research endeavours
to identify the criteria and underlying neuropathology of this medical entity include the risk of
clinically or socially conflating MCI and Alzheimer’s. Although evidence suggests that some
seniors presenting with subclinical cognitive deficit show quantitative anatomical and
structural changes distinct from either normal ageing or Alzheimer’s, the magnitude of these
changes is difficult to calculate due to the lack of consensus regarding the selection criteria
employed and samples that are not representative. This lack of cohesion has implications not
only for bench science but also for clinical practice aiming to identify and treat memory loss.
Social implications of MCI diagnoses
Institutions such as modern medicine are powerful social forces in the lives of citizens of the
western world. When clinical diagnoses are assigned, everyday words such as MCI become
social labels with the power to differentiate between and discriminate against people. It is well
established that not all diagnoses are alike; that is, some come with a stigma relegating those
so labelled to second-class or even ‘subhuman’ status.
That modern medicine, as an institution of social control, has influenced the perception or
social construction of ageing as a negative phenomenon was long ago documented in the
social sciences (Estes 1979, Gubrium 1986, Kaufman 1994, Zola 1972). Accordingly,
pejorative views of ageing reflect and reinforce its (bio)medicalisation (Beard and Estes 2002,
Estes and Binney 1989, Kaufman et al. 2004) rather than a celebration of ageing or even the
acceptance of gradual, ‘normal’ decline, which clearly extends to dementia (Bond 1992,
Lyman 1989). The medicalisation of dementia involves framings of AD in the public media,
advocacy arena and scientific outlets that are predominantly disparaging. Such depictions
include ‘narratives of tragedy’ (Basting 2009), often using the ‘zombie trope’ (Behuniak
2011), focused on a loss of self rhetoric, end-stage issues and perceptions of caregivers as the
real victims of the condition, which are simplistic and overly reductionist. Scientific efforts
emphasise cause and cure and clinical practice focuses on identifying the condition as early as
possible (preferably preclinically and now asymptomatically) as reflected in the steadfast
focus on biomarkers, including imaging technologies (positron imaging tomography),
cerebrospinal fluid and genetic testing. Until recently there has also been scant attention to
the diagnostic imprecision that some provocatively claim created ‘the myth of Alzheimer’s’
(Whitehouse and George 2008) and contributes ‘to premature and speculative hype’
(Graham and Ritchie 2006: 32). Yet there has been little discussion of the social or
interactional consequences and bioethical implications of predicting Alzheimer’s decades
before symptoms are experienced. In exploring the subjective experiences of individuals
diagnosed with MCI, our data are among the first to begin asking how individuals make
sense of this diagnosis and its potential psychosocial impact.
Given the inefficacy of diagnostic and treatment regimens, the social implications of the
label are profound yet almost no data on the subjective experience of this condition exist
(Corner and Bond 2006). Only recently have scholars begun to examine the experiences of
individuals with MCI or their families, and the potential difficulties as well as the unique
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Sense-making in mild cognitive impairment experiences
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attributes of the label (Joosten-Weyn Banningh et al. 2008, Lingler et al. 2006) and associated
changes in familial roles (Blieszner and Roberto 2009, Garand et al. 2005, 2007) have been
demonstrated. Practical, social and psychological consequences of the diagnosis are reported
(Joosten-Weyn Banningh et al. 2008). Emotional and cognitive dimensions of assigning
meaning to a diagnosis of MCI are also said to be influenced by contextual variables such as
previous views about normal ageing, past exposure to dementia and comorbidities (Lingler et
al. 2006). Individuals report confusion and misinformation about their diagnosis (for
example, whether to take medication and where to seek help and find information). As a
result, those diagnosed engage in various coping strategies when faced with the uncertain
label of MCI (Joosten-Weyn Banningh et al. 2008) and the condition presents ‘new and
complex challenges’ (Blieszner and Roberto 2009) for families and care partners alike.
What people with MCI1 do have in common with those diagnosed with AD, sociologically
speaking, is a threatened personal and interpersonal wellbeing, including a sense of being
devalued (Beard and Fox 2008, MacQuarrie 2005, Werezak and Stewart 2002). Along with
epilepsy and schizophrenia, individuals diagnosed with Alzheimer’s risk being conflated with
the thing that they are labelled; thus becoming ‘epileptics’, ‘schizophrenics’, and ‘Alzheimer
patients’ (Estroff 1989, Link and Phelan 2001). Accordingly, unlike persons who have cancer
or even AIDS, the connotation of being ‘no longer there’ or ‘dead before death’ risks
throwing individuals with AD into a social wastebasket, which bioethicist Stephen Post
(1995) long ago termed ‘The moral challenge of Alzheimer’s disease’. Diagnostic expansion
escalates the threat.
While MCI diagnoses are likely to increase, given the new guidelines, its aetiological and
clinical heterogeneity have prompted questions about whether a diagnosis of MCI can be
accurately differentiated from normal ageing and whether the potential consequences of
being associated with Alzheimer’s are worth the questionable benefits offered by the current
pharmacological treatment options and social services available (Gaines and Whitehouse
2006, Whitehouse and Moody 2006). Although the lack of consistent evidence supporting the
hypothesis that MCI may progress to dementia or AD brings to light the relatively arbitrary
nature of this clinical entity, biomedical constructions dominate the framing of forgetfulness.
Given population ageing and the new diagnostic criteria, the social significance of this illness
identity cannot be overstated; a diagnosis of any ‘memory problem’ indeed creates social
problems for affected individuals.
Understanding the social aspects of MCI diagnoses was the basis for our analysis. We
found that respondents were confused and misinformed about definitions of memory loss,
MCI and AD as well as the distinctions between normal ageing and dementia. While
respondents’ confusion over terminology and prognosis mirrors the lack of scientific
consensus about the nosology and appropriate treatment regimen for MCI, their
resoundingly negative perceptions of AD and associated fears also reflect the dismal
portrayal of the condition in the media, advocacy arena and biomedical realms. We
hypothesise that in the framing (Goffman 1974) contest over Alzheimer’s a deficit model of
modern medicine prevails, based on America’s decline ideology (Gullette 2011). Since frame
analysis sheds light on how people interpret situations and activities, we speculated that
individuals diagnosed with MCI would perform interactional work to employ coping
strategies similar to those reported by individuals with Alzheimer’s (Beard 2004a, Beard and
Fox 2008, Beard et al. 2009, Clare 2002, 2003, Clare et al. 2005, Sabat 2001) in an effort to
minimise their subsequent social disenfranchisement or the associated stigma. We suspected
that such efforts to avoid the master status of ‘Alzheimer patient’ would reflect an
internalised ageism in our respondents based on what has been called the American cultural
construction of decline (Gullette 2011). We posit that the interactional tensions resulting
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134
Renée L. Beard and Tara M. Neary
from this label, which necessitate management strategies, are based on the courtesy stigma
(Goffman 1963) from the presumed association with Alzheimer’s. Thus, the diagnosis comes
with considerable social baggage; that is, the confusion and fear surrounding the condition
causes a threat to the social identity of those labelled with MCI. While stigma as a
sociological concept has been widely applied to various illnesses, disabilities and
characteristics, ‘courtesy stigma’ is most often used to analyse the social and psychological
impact, on the individual level, of associating with a discredited person. We suggest that the
term can be extended to various related conditions, here MCI. Applying courtesy stigma to
associated conditions adds to the reconceptualising of stigma (Link and Phelan 2001) and the
general theoretical discourse on this core sociological concept.
Methods
These data are a subset of a larger study, entitled ACCESS (Assessing the Cultural
Characteristics of Elders and the Support Systems), exploring first-hand and second-hand
narratives of AD. The purpose of the subset analysis reported here was to examine the
specific experiences of memory loss for individuals diagnosed with MCI.
The larger project was an exploratory study utilising mixed methods, including in-depth
interviews, focus groups and survey data. Multiple forms of data collection were used to
allow participation in either personal or group discussions, depending on the respondents’
preference. Furthermore, triangulation of in-person interviews with focus groups increases
the validity of the findings since group conversations remove the potential pressure of direct
recall required during in-person interviews. The research was based on a nonprobability
sample using convenience, snowball and theoretical sampling.
Given the paucity of previous studies on the topic and exploratory nature of this research,
grounded theory methods were deemed well-suited to the project. These techniques were
employed in collecting, coding and analysing data to inductively generate theory grounded in
the data themselves rather than testing hypotheses or existing theories.
Recruitment
All study participants were recruited from a research registry at an Alzheimer’s Disease
Center in a large Midwestern US city. The respondents had sought cognitive evaluation of
their own accord because they suspected that something was wrong with their memory, had
been given a diagnosis of amnestic MCI within the previous three years and were
community-dwelling. They had agreed to be contacted about future research studies and
thus, at least implicitly, self-identified with the label they had been given.
Sample
The subset sample reported on here included in-depth individual interviews (n = 10) and two
focus groups (n = 8) with individuals diagnosed with MCI (N = 18). Among our
informants, two-thirds (n = 12) were women and one-third (n = 6) were men. Most were
either widowed (50%) or married (33%), with one each being single and divorced. Their
average age was 76 years old. The sample was divided between respondents who stated their
race was Caucasian (56%) and those who self-identified as African American (44%). Almost
three-quarters (n = 13; 72%) of the participants had at least ‘some college’, with seven
(39%) reporting 16 + years of education and another third (n = 6) who had graduated from
high school. Half (n = 9) of our respondents reported income levels between $20,000–39,000
(adjusted per person), with 22% (n = 2 each) below $20,000 and above $65,000. What these
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Sense-making in mild cognitive impairment experiences
135
characteristics reveal is a group of respondents who are disproportionately middle-class
widows of higher than average education living alone in the community. Given the paucity of
previous samples to compare with and the lack of consensus on inclusion criteria (amnestic
versus other MCI, age, comorbidities, etc.) used in prior studies, meaningful comparisons
cannot be made. The social location of these study participants is, however, important to
keep in mind when interpreting the findings outlined below. See Table 1 for complete sample
characteristics.
Qualitative analysis
The first author and principal investigator (RB) conducted all interviews in person using an
interview guide. The guide was utilised as a probe to generate conversation without following
a standardised format and questions were added on if and when new areas of inquiry were
discovered. Respondents, as the experts on the subjective experiences of MCI, were generally
encouraged to lead the conversation according to what they deemed important.
Table 1 Sample characteristics
Women
(n = 12)
Diagnosis
Mild cognitive impairment
Age
65–74 years
75–84 years
85 + years
Race ⁄ ethnicity
African Americans
White, not Hispanic
Marital status
Married
Widowed
Single
Divorced
Highest education completed
High school graduate or general
education diploma
Some college, technical or vocational
College degree
At least some graduate education
Annual income per person
< $20,000
$20,000–39,999
$40,000–64,999
$65,000–99,999
Time since diagnosis
< 1 year
2 year
3 years
Percentage of
total sample
Men
(%)
(n = 6)
(%)
(N = 18)
12
100
6
100
100
8
3
1
67
25
8
2
1
3
33
17
50
56
22
22
8
4
67
33
0
6
0
100
47
53
1
9
1
1
8
75
8
8
6
0
0
0
100
0
0
0
39
50
6
6
5
42
0
2
1
4
17
8
33
2
2
2
33
33
33
22
17
33
2
7
3
0
17
58
25
0
0
2
2
2
0
33
33
33
11
50
28
11
10
2
0
83
17
0
1
4
1
16.5
67
16.5
61
33
6
28
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Renée L. Beard and Tara M. Neary
All interviews were audio-taped, transcribed and then analysed using the constant
comparative method and coding paradigm of grounded theory (Corbin and Strauss 1998,
Glaser and Strauss 1967). Since this method aims to generate overarching themes, the
ongoing process of taking notes, writing memos and (re)reading data lends itself to emergent
categories for simplifying and articulating data. As line-by-line coding occurs, themes are
generated. Detailed notes were dictated immediately following all interviews. Paid assistants
transcribed each taped interview verbatim, yielding 311 pages of narrative transcript data.
The interviewer verified the transcript accuracy by reading each one upon receipt. Additional
quality control measures (i.e., reading transcripts while playing the data files) were performed
on 100 per cent of the subsample used for the present analysis. In the larger study all
interview transcripts were read prior to scheduling the next one to encourage the incremental
development of theory and the categorisation of ideas and themes.
The present analysis began with open coding, which involved identification of the
dimensions and properties of the themes in the margins of textual data line-by-line. Next,
themes were consolidated by using an explanatory matrix to identify core variables. Themes
were not deemed representative of the subsample unless they occurred in most of the cases or
interviews. To ensure reliability of the findings in this sub-study analysis, three research
assistants from the larger ACCESS project read all the textual interview files, provided
detailed analysis notes and line-by-line coded each transcript. The themes identified in their
analyses were consistent with the major core variables identified by the co-authors. The
common themes for the subset of individuals diagnosed with MCI will be reported here.
Findings
The data reveal that the study participants in fact perform various types of interactional
work, on abstract as well as concrete levels, to manage their memory difficulties. The four
common themes include: questioning whether or not their condition was a disease, struggling
to define MCI, distancing their experiences from Alzheimer’s and, at least implicitly,
grappling with the social implications of the diagnosis vis á vis Alzheimer’s. In the extracts
the abbreviation ‘R’ with a number indicates a respondent, ‘INT’ indicates the setting was an
interview and ‘FG’ indicates the setting is a focus group. The interviewer’s questions are in
italics.
Is what we are experiencing a disease?
In support of previous studies (Joosten-Weyn Banningh et al. 2008, Lingler et al. 2006), most
respondents identified their forgetfulness as a consequence of the normal ageing process
rather than a brain-based disorder. While they reported occasional difficulty with remembering names or places, individuals with MCI did not consider their experiences to be a
significant problem. This led them to ascribe their memory problems to their ageing identity:
R1:
R2:
R3:
What do you think is going on?
Other than getting old? I don’t know.
Getting old. I think that’s what it is.
Getting older, you forget certain types of things. You’re not as quick as you used to be.
(FG, African American women)
I think the problem I have today is a mild problem. It is not a severe problem for me.
(INT, Caucasian man)
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Similar views were cited, to varying degrees, by nearly every respondent in our study. As
Lingler et al. (2006) suggest, individuals with MCI perceive their diagnosis to be an expected
aspect of the ageing process, and our findings demonstrate that those with MCI normalise
their memory difficulties accordingly. That is, memory loss was yet another obstacle to be
overcome, like hearing loss, reduced mobility or social isolation.
Furthermore, several respondents identified the need to slow down in general as they grew
older and the importance of accepting the changes in their memory:
It’s time to slow down ... I’m not Superwoman. I have to realise that and stop. That’s what
I realise is going on with me. (FG, African American woman)
I guess another thing that you have to realise is that as you age your whole body
changes and things change in your life and you have to accept it. (INT, African
American woman)
Yes, we all laugh about it. You know, ‘Oh, we’re getting old!’ (INT, African
American woman)
As the last quote shows, some respondents actively used humour to help them manage their
memory lapses. Our findings also support the notion that individuals with MCI engage in
various coping strategies when dealing with their diagnosis (Joosten-Weyn Banningh et al.
2008). Such strategies include emotion-oriented coping in which individuals express
acceptance and resignation as a way to normalise their forgetfulness rather than fight it.
Problem-focused coping, such as keeping notes to remind them of important dates and
information, were also reported. Unlike the participants in the Joosten-Weyn Banningh et al.
(2008) study, however, our respondents did not explicitly deny their forgetfulness or
demonstrate avoidance-oriented coping strategies. On the contrary, most participants
contended that their memory problems were not unique and that nearly everyone their age
experiences similar difficulties:
So do you think you have the same amount of forgetfulness as others your age?
Oh, I think we all go through times where we can’t remember something and we just skip
and we forget what we’re looking for but it will come back to us. I don’t think it’s a serious
problem. All of us go through those things. (INT, African American woman)
It’s not early stage Alzheimer’s. It’s not MCI. I have a situation where I can’t remember
something. But, I don’t think that is different than other people my age. (INT, Caucasian
man)
Ultimately, our respondents identified their forgetfulness as a normal and common feature of
growing older. As such, they did not consider their difficulties to be a serious problem or
something that required routine medical attention. Instead, they normalised their experiences
as part of the ageing process.
What is MCI?
When asked specifically about their diagnosis, respondents reported a resounding lack of
clarity about what constitutes MCI despite the predominance of perceptions connecting it to
normal ageing processes:
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Renée L. Beard and Tara M. Neary
What does MCI mean to you?
[laughs] You forget things. You’re not always doing the right thing 100% of the time …
Something’s going on in the brain.
Do you think that’s what’s going on for you? Is this mild cognitive impairment?
I’m not sure. I don’t know … It means I forget. It could be the first stages of Alzheimer’s.
Was your impression that mild cognitive impairment is a disease or forgetfulness?
I don’t know about a disease, more of a … Well I don’t believe it was ever discussed. I think
it was at least in my mind a consequence of getting older. (INT, Caucasian woman)
How would you define mild cognitive impairment?
I’m not sure that it was defined. I would say that it is the inability to function the way you
should. I don’t necessarily find that is the case with me. (INT, Caucasian man)
Have you ever heard the words mild cognitive impairment?
I’ve heard those terms, but I’m not sure what they mean. (INT, African American woman)
As these quotes demonstrate, study participants generally did not know how to describe
MCI. In fact, many were not sure that the term had ever been defined for them by doctors.
Perhaps this general ambiguity reflects the scientific literature and clinical practices based on
it. Nonetheless, there were a few respondents who defined MCI as a memory-related
disorder, if vaguely:
Some kind of disorder in … the brain? Mild disorder. That’s what I think. (FG, African
American woman)
Do you think it might mean you’re on your way to Alzheimer’s?
You’re on your way to something … it’s a disorder. (FG, African American woman)
While the new guidelines suggest that MCI is undergoing a medicalisation process,
narrative accounts of the condition do not support this.2 In fact, study respondents
demonstrate a resistance to such labelling. Despite advances in diagnostic criteria and
practice parameters, perhaps this is due to the fact that the MCI label is used inconsistently
by clinicians and researchers (as the need for new diagnostic guidelines suggest; see
Whitehouse et al. 2004). Accordingly, its arbitrary location on a continuum of ageassociated cognitive challenges can be a source of great confusion and uncertainty for
individuals with MCI. For example:
I don’t have any idea … a precursor? My feeling is there is a lot of guesswork involved and
that people don’t really know. Do you have early stage Alzheimer’s? Do you have MCI? Is
there a difference? [It’s] a gray area. It’s like trying to make sense of nonsense. (INT,
Caucasian man)
Such ambiguity about terminology and prognosis reflects the lack of scientific consensus
about the nosology and appropriate treatment regimen for MCI.
At least it isn’t AD
Despite their confusion, participants vehemently denied any association between their
experiences and Alzheimer’s. Consequently, many respondents reported that the awareness
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of one’s own forgetfulness distinguishes MCI from AD. The following quotes demonstrate
this differentiation:
We acknowledge that we forgot this or forgot that.
And do you think that is what makes it different from, say, Alzheimer’s disease?
Right. Or it’s just one step behind. (INT, Caucasian woman)
I would say that if my memory begins to get worse, then I would know. I would know that
something is worse. (INT, African American woman)
Previous studies have shown considerable variability in the level of awareness of cognitive
deficits among individuals with MCI. While some people have quite limited awareness,
others overestimate their dysfunction which may signify a hyper-awareness (Roberts et al.
2009). The ability to recognise their memory difficulties was interpreted by our
respondents as evidence of normal ageing rather than a serious problem like Alzheimer’s.
Perhaps the apparent need to distinguish their experiences from AD is an example of
efforts to maintain a normal identity, as reported in relation to other health conditions
(Gray 2002). Although many respondents talked about this, one woman specifically stated
that not being able to do what she normally does would signify that her condition was
more significant:
If it gets to the point where I cannot do a straight tax and I don’t know where to begin
with a client, then there’s something wrong. And [if] I’m going to church and Sunday
school and I can’t get through a lesson, and I don’t understand what it’s saying to me, then
there’s something wrong. (INT, African American woman)
This quote demonstrates the assumption most respondents held that crossing some
predetermined threshold would signal a ‘real’ problem.
Implications of association with Alzheimer’s
When discussing Alzheimer’s, there was general consensus among our respondents that it is a
medical condition. Despite the vague definitions provided below, respondents relied mainly
on medical explanations to define AD.
I do think of it as a disease, as a loss of not just function but actual tissue. It is not a
normal thing. (INT, Caucasian man)
In your impression what is Alzheimer’s, a disease?
Okay … I would say it’s a disease. But there’s no cure. But it’s a disease like anything else.
(INT, African American woman)
Upon further probing, however, most respondents were unsure of its aetiology:
R1:
R2:
R3:
R4:
So how do you think people get Alzheimer’s? What causes Alzheimer’s?
I don’t know.
I don’t know.
I have no idea. Some people say maybe a lick on the head you incurred earlier.
Some people, age just doesn’t affect them the way it affects other people. (FG, African
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Renée L. Beard and Tara M. Neary
American women)
What do you think causes that [AD]?
I have no idea. Is it something in the brain or something in the body chemistry or
something that changes with aging or what? I don’t know. (INT, African American
woman)
What was unanimously and most commonly expressed, however, was the fear associated
with Alzheimer’s – the ‘death sentence’ diagnosis – and their determination not to ‘get it’:
It’s feared just like cancer is. It’s a death sentence … Means a loss of function, of essential
function. To function as a human being. A loss of the capacity to be one’s self. And it’s
frightening. It’s the worst of all insults.
Why?
Because I suppose above all things we prize ourselves, who we are, who we have come to
be, what we have been and what we can be and if we lose all that we’ve lost everything.
And as you see it the disease that is Alzheimer’s does that?
As it progresses, yes. (INT, Caucasian woman)
Because they would rather be crazy than have Alzheimer’s … It’s a death sentence. It’s
over. (FG, African American woman)
[Alzheimer’s is a] lack of life. Lack of recognition. Lack of knowledge. (INT, Caucasian
woman)
Perhaps as a result of their determination not to have their experiences conflated with
Alzheimer’s, some respondents reflected a lay understanding of what Goffman might have
called a courtesy stigma potentially resulting from associating MCI with Alzheimer’s:
And when you get something like Alzheimer’s you feel you’re no longer in charge … I
don’t think any of us like the idea of having to give over to somebody else. (INT, African
American woman)
[With Alzheimer’s] you are not able to do what you need to do psychologically and
mentally. That’s what I think and I don’t think I have early stage Alzheimer’s. Probably
because it is a terrible disease and I don’t want to be a part of that. (INT, Caucasian
man)
The transparency of their fears related to Alzheimer’s demonstrates the assumptions our
respondents held about the futility of life with AD. Given that depictions of memory loss
have typically been framed within what has been called a biomedical discourse of loss (Beard
and Fox 2008), in which a diagnosis of Alzheimer’s signifies the never-ending funeral, a slow
unravelling of the self and a complete loss of one’s self (Basting 2009, Beard et al. 2009, Fox
1989, Gubrium 1986), the views of our participants are not surprising. Empirical studies of
memory loss are most often based on biomedical or psychological models of disease
pathology and symptom reduction. Our respondents’ views reflect the general public’s
negative perception of AD based on media and advocacy representations of this disease as
the slow death of the mind and the biomedical emphasis on cause and cure rather than living
with Alzheimer’s.
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Contemporary public perceptions and media portrayals of Alzheimer’s are almost
exclusively pejorative despite the now vast literature demonstrating the meaningful lives such
individuals continue to live (Basting 2009, Beard et al. 2009, Harris 2009), including
numerous autobiographies countering such generalisations (Bryden 2005, DeBaggio 2007,
Fisher 2007) and explicit efforts by those so diagnosed to combat these assumptions (Knauss
and Moyer 2006, Sterin 2002, Taylor 2006). Attempts to normalise experiences of
forgetfulness, or manage their social identities to avoid the master status of Alzheimer patient
are commonly reported by individuals who have AD as well (Beard and Fox 2008, Clare
2003, Clare et al. 2005). Although it is likely that our respondents are indeed aware of the
vast differences between Alzheimer’s and their own experiences of forgetfulness, it is
important to understand the social context within which they were medically evaluated and
ultimately diagnosed with MCI.
Previous studies have discussed how individuals diagnosed with AD (must) negotiate
threats to self (Clare 2003) and a tangled veil (Sabat 2001) in order to preserve their identities
(Beard 2004a). Arguably, the respondents’ unequivocally negative perceptions of life with
Alzheimer’s encourage them to perform stigma avoidance by differentiating their experiences
from those with AD. The social consequences of being associated with individuals who are
stigmatised, or courtesy stigma, perhaps leads individuals diagnosed with MCI to (need to)
actively resist the stigma of Alzheimer’s. Given the overwhelmingly negative constructions of
AD in modern western societies, it is perhaps strategic to at least try to avoid such
association.
Discussion
We argue that Alzheimer’s can be added to the long list of stigmatised medical labels that
ascribe a master status to recipients. Perhaps most significantly, the diagnostic creep of
Alzheimer’s extends the threat to preclinical states like MCI. The seemingly endless
diagnostic expansion (Conrad 2007) demonstrated by the new guidelines for AD has the
potential to apply this devalued status to individuals in the asymptomatic phase as well.
The study participants expressed considerable uncertainty regarding what MCI is and
how it differs from AD. Although they mostly considered their forgetfulness to be ageingrelated or normal, they vacillated on this. Furthermore, they were unclear even about the
definition and cause of Alzheimer’s, despite the steady stream of media attention and
outpouring of research funding. What is quite clear, however, is their resounding fear of
Alzheimer’s – according to them it is a ‘death sentence’ the ‘loss of function as a human
being’ and ‘a loss of capacity to be one’s self’. Perhaps the study participants fear AD not
as a result of their direct experiences but rather because of their uniformly negative
perceptions of the condition. This loss of self rhetoric reflects the contemporary pejorative
views portrayed in the public media and basic sciences generally. This projection
homogenises all individuals so diagnosed and universalises all ‘stages’ of the condition (to
the ‘end stage’). Although advocacy organisations could go a long way to help refute this
discourse of loss they have been slow to do so (Beard 2004b). Since social identities are
constructed and precarious in nature, people devise strategies to make the unmanageable
manageable (Birenbaum 1992, 1970). If the social attribution of stigma creates distinctions
– moral and otherwise – then individuals diagnosed with MCI strive to distinguish their
experiences from Alzheimer’s to avoid being ascribed the associated spoiled identity
(Goffman 1963). Stigma is deeply social and for those adversely labelled, medical conditions
become social problems to be managed.
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Renée L. Beard and Tara M. Neary
The ever-expanding medical gaze arguably generates courtesy stigma (Goffman 1963) not
only for those associated with individuals who have problematic conditions – as discussed in
relation to the significant others of people with various health conditions, including
Alzheimer’s (Holston 2005, Jolley and Benbow 2000, MacRae 1999, Werner and Heinik
2008) but also for associated conditions, such as MCI. Accordingly, critical social theorists
(Armstrong 1995, Arney and Bergen 1984, Foucault 1973) might position Alzheimer’s as a
quintessential case of contemporary surveillance medicine. By reifying everyday words such
as MCI into a bona fide medical label, the new guidelines simultaneously socially construct
the perception of a need for increased self-surveillance by current and future older individuals
alike. Given the relatively recent interest in and now established diagnosis of MCI, the
diagnostic shift underway in dementia care reveals a compelling example of postmodern
social problems. Since diagnostic labels can influence emotional responses, symptom
perceptions, attributions and coping skills (Wadley and Haley 2001), even a ‘pre-dementia’
diagnosis can generate interactional tensions. Thus, more and different information is needed
as a result of the prognostic uncertainty of an MCI label than the existing practice geared
toward individuals with AD provides. In particular, qualitative, narrative accounts of MCI
are missing. Including the perspectives of individuals diagnosed with MCI makes a
substantial contribution to the research on subjective experiences of AD and reveals the
existential angst present in what has been called a health-obsessed or risk society.
Furthermore, since dementia and AD do not exist in all cultures, the heightened sense of
value imposed on brains, minds and sentience in western societies positions Alzheimer’s as a
distinctly postmodern phenomenon as well as a powerful example of how social
constructions and processes of medicalisation can be socially and interactionally troublesome
for even potentially diagnosed individuals.
In addition to expanding existing theoretical debates, these findings also have implications
for future research and clinical practice. It is crucial to understand the perspectives of those
most intimately affected in order to trace the effects of medical labels on social interactions
and everyday lives. In order to address bioethical concerns, inform interventions and improve
clinical encounters and quality of life for diagnosed individuals, as well as to provide
appropriate services and treatment options, narratives of MCI must be explored further.
Given the recent redefinition of MCI as the symptomatic, pre-dementia phase of Alzheimer’s,
which is technically the middle stage of the continuum for what is now a spectrum disorder,
experiences of the condition should also be tracked longitudinally as this reconceptualisation
infiltrates lay understandings of the condition or is resisted by them.
Address for correspondence: Rene´e L. Beard, Department of Sociology and Anthropology,
College of the Holy Cross, One College Street, Beaven Hall 218, Worcester, MA 01610,
USA
e-mail: rbeard@holycross.edu
Notes
1 Despite the fact that we use the term ‘people’, the lack of consensus on the terminology prevents an
accurate reading of the characteristics, or social location, or the kinds of people who are diagnosed
with MCI. It is impossible, therefore, to address variables such as race and ethnicity, social class,
gender or even age of diagnosed individuals: issues of central importance to sociology.
2 Perhaps this is related to the fact that the official designation of MCI as a stage of AD had not been
made at the time this research was conducted.
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Acknowledgements
The findings from this project were presented at the Gerontological Society of America and
Society for the Study of Symbolic Interaction meetings in 2010. We want to thank all the
individuals who took the time to share their stories with us. The insightful comments of the
journal editors and anonymous reviewers were also very helpful. This research was funded by
the Midwest Roybal Center for Health Promotion and Behavior Change (2005-E7651) and
the Illinois Department of Public Health’s Alzheimer’s Disease Research Fund (No.
83280014). Thank you also to the Northwestern Alzheimer’s Disease Center (grant
AG13854) Clinical Core and the National Chapter of the Alzheimer’s Association, both in
Chicago, for kindly helping us recruit participants. The Richard and Sarah Greisch Summer
Research Fellowship in Sociology at the College of the Holy Cross, awarded to the second
author, supported this sub-set analysis.
References
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders
IV (DSM-IV), available at http://www.psych.org/mainmenu/research/dsmiv/dsmivtr.aspx (last
accessed 19March 2012).
Aquilina, C. and Hughes, J.C. (2006) The return of the living dead: agency lost and found? In
Hughes, J.C., Louw, S.J. and Sabat, S.R. (eds) Dementia: Mind, Meaning, and the Person.
Oxford: Oxford University Press.
Armstrong, D. (1995) The rise of surveillance medicine, Sociology of Health & Illness, 17, 3, 393–
404.
Arney, W.R. and Bergen, B.J. (1984) Medicine and the Management of Living: Taming the Last
Great Beast. Chicago: University of Chicago Press.
Basting, A.D. (2009) Forget Memory: Creating Better Lives for People with Dementia. Baltimore:
Johns Hopkins University Press.
Beard, R.L. (2004a) In their voices: identity preservation and experiences of Alzheimer’s disease,
Journal of Aging Studies, 18, 4, 415–28.
Beard, R.L. (2004b) Advocating voice: organisational, historical and social milieux of the
Alzheimer’s disease movement, Sociology of Health & Illness, 26, 6, 797–819.
Beard, R.L. and Estes, C. L. (2002) Medicalization of aging. In Ekerdt, D.J. (ed.) Macmillan
Encyclopedia of Aging. London: Macmillan.
Beard, R.L. and Fox, P.J. (2008) Resisting social disenfranchisement: negotiating collective
identities and everyday life with memory loss, Social Science & Medicine, 66, 7, 1509–20.
Beard, R.L., Knauss, J. and Moyer, D. (2009) Managing disability and enjoying life: how we
reframe dementia through personal narratives, Journal of Aging Studies, 23, 4, 237–45.
Behuniak, S.M. (2011) The living dead? The construction of people with Alzheimer’s disease as
zombies, Ageing & Society, 31, 1, 70–92.
Birenbaum, A. (1970) On managing courtesy stigma, Journal of Health and Social Behavior, 11, 3,
196–206.
Birenbaum, A. (1992) Courtesy stigma revisited, Mental Retardation, 30, 5, 265–8.
Blieszner, R. and Roberto, K.A. (2009) Care partner responses to the onset of mild cognitive
impairment, The Gerontologist, 50, 1, 11–21.
Bond, J. (1992) The medicalization of dementia, Journal of Aging Studies, 6, 4, 397–403.
Bryden, C. (2005) Dancing with Dementia: My Story of Living Positively With Dementia. London:
Jessica Kingsley.
2012 The Authors
Sociology of Health & Illness 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd
144
Renée L. Beard and Tara M. Neary
Clare, L. (2002) We’ll fight it as long as we can: coping with the onset of Alzheimer’s disease,
Aging & Mental Health, 6, 2, 139–48.
Clare, L. (2003) Managing threats to self: awareness in early stage Alzheimer’s disease, Social
Science & Medicine, 57, 6, 1017–29.
Clare, L., Roth, I. and Pratt, R. (2005) Perceptions of change over time in ES Alzheimer’s
Disease: implications for understanding awareness and coping style, Dementia: The International
Journal of Social Research and Practice, 4, 4, 487–520.
Cohen-Mansfield, J., Golander, H. and Arnheim, G. (2000) Self-identity in older persons suffering
from dementia: preliminary results, Social Science & Medicine, 51, 3, 381–94.
Conrad, P. (2007) The Medicalization of Society: On the Transformation of Human Conditions into
Treatable Disorders. Baltimore: Johns Hopkins University Press.
Corbin, J. and Strauss, A. (1998) Basics of Qualitative Research: Techniques and Procedures for
Developing Grounded Theory. New York: Sage.
Corner, L. and Bond, J. (2006) The impact of the label of mild cognitive impairment on
individual’s sense of self, Philosophy, Psychiatry, and Psychology, 13, 1, 3–12.
Daly, E., Zaitchik, D., Copeland, M., Schmahmann, J.D., et al. (2001) Clinical predictors of
conversion to Alzheimer’s. In Vellas, B. and Fitten, L.J. (eds) Research and Practice in
Alzheimer’s Disease. Vol 5. Paris: Springer.
DeBaggio, T. (2007) When It Gets Dark: An Enlightened Reflection on Life with Alzheimer’s. New
York: Free Press.
Elias, M.F., Beiser, A. Wolf P.A., Au, R., et al. (2001) 22-years of prospective study of the
preclinical phase of Alzheimer’s Disease: the Framingham Cohort. In Vellas, B. and Fitten, L.J.
(eds) Research and Practice in Alzheimer’s Disease, Vol. 5. Paris: Springer.
Estes, C.L. (1979) The Aging Enterprise: A Critical Examination of Social Policies and Services for
the Aged. San Francisco: Jossey-Bass.
Estes, C.L. and Binney, E. (1989) The biomedicalization of aging: dangers and dilemmas, The
Gerontologist, 29, 5, 587–96.
Estroff, S.E. (1989) Self, identity and subjective experiences of schizophrenia: in search of the
subject, Schizophrenia Bulletin, 15, 2, 189–96.
Fisher, L.S. (2007) Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with
Alzheimer’s. Columbia: L.S. Fisher.
Foucault, M. (1973) The Birth of the Clinic: An Archeology of Medical Perception. London:
Tavistock.
Fox, P.J. (1989) From senility to Alzheimer’s disease: the rise of the Alzheimer’s disease
movement, Milbank Quarterly, 67, 1, 58–102.
Gaines, A.D. and Whitehouse, P.J. (2006) Building a mystery: Alzheimer’s disease, mild cognitive
impairment, and beyond, Philosophy, Psychiatry, and Psychology, 13161–74.
Garand, L., Dew, M.A., Eazor, L.R., DeKosky, S.T., et al. (2005) Caregiving burden and
psychiatric morbidity in spouses with mild cognitive impairment, International Journal of
Geriatric Psychiatry, 20, 6, 512–22.
Garand, L., Dew, M.A., Urda, B., Lingler, J.H., et al. (2007) Marital quality in the context of
mild cognitive impairment, Western Journal of Nursing Research, 29, 8, 976–92.
Glaser, B.G. and Strauss, A.L. (1967) Discovery of Grounded Theory: Strategies for Qualitative
Research. Chicago: Aldine de Gruyter.
Goffman, E. (1974) Frame Analysis: an Essay on the Organization of Experience. New York:
Harper Colophon.
Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Engelwood Cliffs:
Prentice-Hall.
Graham, J.E. and Ritchie, K. (2006) Mild cognitive impairment: ethical considerations for
nosological flexibility in human kinds, Philosophy, Psychiatry, and Psychology, 13, 1, 31–43.
Graham, J.E., Rockwood, K., Beattie, E.L., Eastwood, R., et al. (1997) Prevalence and severity of
cognitive impairment with and without dementia in an elderly population, The Lancet, 349,
9068, 1793–6.
2012 The Authors
Sociology of Health & Illness 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd
Sense-making in mild cognitive impairment experiences
145
Gray, D.E. (2002) ‘Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma
among parents of children with high functioning autism, Sociology of Health & Illness, 24, 6,
734–49.
Gubrium, J.F. (1986) Oldtimers and Alzheimer’s: The Descriptive Organization of Senility. London:
JAI Press.
Gullette, M.M. (2011) Agewise: Fighting the New Ageism in America. Chicago: University of
Chicago Press.
Harris, P.B. (2009) Intimacy, sexuality, and early-stage dementia: the changing marital
relationship, Alzheimer’s Care Today, 19, 2, 63–77.
Holst, G. and Hallberg, I.R. (2003) Exploring the meaning of everyday life for those suffering
from dementia, American Journal of Alzheimer’s Disease and Other Dementias, 18, 6, 359–65.
Holston, E.C. (2005) Stigmatization in Alzheimer’s disease research on African American elders,
Issues in Mental Health Nursing, 26, 10, 1103–27.
Jack, C.R. Jr, Albert, M.S., Knopman, D.S., McKhann, G.S., et al. (2011) Introduction to the
recommendations from the National Institute on Aging and the Alzheimer’s Association
Workgroups on diagnostic guidelines for Alzheimer’s Disease, Alzheimer’s & Dementia, 7, 3,
257–62.
Jolley, D.J. and Benbow, S.M. (2000) Stigma and Alzheimer’s disease: causes, consequences and a
constructive approach, International Journal of Clinical Practice, 54, 2, 117–9.
Joosten-Weyn Banningh, L. J.-W., Vernooij-Dassen, M., Rikkert, M. O. and Teunisse, J.-P. (2008)
Mild cognitive impairment: coping with an uncertain label, International Journal of Geriatric
Psychiatry, 23, 2, 148–54.
Kaufman, S.K., Shim, J.K. and Russ, A.J. (2004) Revisiting the biomedicalization of aging:
clinical trends and ethical challenges, The Gerontologist, 44, 6, 731–8.
Kaufman, S.R. (1994) The social construction of frailty: an anthropological perspective, Journal of
Aging Studies, 8, 1, 45–58.
Knauss, J. and Moyer, D. (2006) The role of advocacy in our adventure with Alzheimer’s,
Dementia: The International Journal of Social Research and Practice, 5, 1, 67–72.
Kral, V.A. (1962) Senescent forgetfulness: benign and malignant, Canadian Medical Association
Journal, 86, 6, 256–70.
Kramer, B.J. (1997) Differential predictors of strain and gain among husbands caring for wives
with dementia, The Gerontologist, 37, 2, 239–49.
Krasuski, J.S., Alexander, G.E., Horowitz, B., Daly, E.M., et al. (1998) Volume of medial
temporal lobe structures in patients with Alzheimer’s disease and mild cognitive impairment
(and in healthy controls), Biological Psychiatry, 43, 1, 60–8.
Li, R. and Orleans, M. (2002) Personhood in a world of forgetfulness: an ethnography of the selfprocess among Alzheimer’s patients, Journal of Aging and Identity, 7, 4, 227–44.
Lingler, J.H., Nightingale, M.C., Erlin, J.A., Kane, A.L., et al. (2006) Making sense of mild
cognitive impairment: a qualitative exploration of the patient’s experience, The Gerontologist, 46,
6, 791–800.
Link, B.G. and Phelan, J.C. (2001) Conceptualizing stigma, Annual Review of Sociology, 27, 363–85.
Lyman, K. (1989) Bringing the social back in: a critique of the biomedicalization of dementia,
The Gerontologist, 29, 5, 597–605.
MacQuarrie, C.R. (2005) Experiences in early stage AD: Understanding the paradox of acceptance
and denial, Aging and Mental Health, 9, 5, 430–41.
MacRae, H. (1999) Managing courtesy stigma: the case of Alzheimer’s disease, Sociology of Health
& Illness, 21, 1, 54–70.
Petersen, R.C., Smith, G.E., Waring, S.C., Ivnik, R.J., et al. (1997) Aging, memory, and mild
cognitive impairment, International Psychogeriatrics, 9, 1, 65–9.
Petersen, R.J. (2004) Mild cognitive impairment as a diagnostic entity, Journal of Internal
Medicine, 256, 183–94.
Post, S.G. (1995) The Moral Challenge of Alzheimer’s Disease. Baltimore: Johns Hopkins
University Press.
2012 The Authors
Sociology of Health & Illness 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd
146
Renée L. Beard and Tara M. Neary
Post, S.G. (2000) Concepts of Alzheimer’s disease in a hypercognitive society. In Whitehouse, P.,
Maurer, K. and Ballenger, J.F. (eds) Concepts of Alzheimer’s Disease: Biological, Clinical and
Cultural Perspectives. Baltimore: Johns Hopkins University Press.
Purser, J.L., Fillenbaum, G.G. and Wallace, R.B. (2006) Memory complaint is not necessary for
diagnosis of mild cognitive impairment and does not predict 10-year trajectories of functional
disability, word recall, or short portable mental status questionnaire limitations, Journal of the
American Geriatrics Society, 54, 2, 335–8.
Ritchie, K. and Touchon, J. (2000) Mild cognitive impairment: conceptual basis and current
nosological status, The Lancet, 355, 9199, 225–8.
Roberts, J.L., Clare, L. and Woods, R.T. (2009) Subjective memory complaints and awareness of
memory functioning in mild cognitive impairment: a systematic review, Dementia and Geriatric
Cognitive Disorders, 28, 95–109.
Sabat, S.R. (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford:
Blackwell.
Sterin, G. (2002) Essay on a word: a lived experience of Alzheimer’s disease, Dementia:
The International Journal of Social Research and Practice, 1, 1, 7–10.
Taylor, R. (2006) Alzheimer’s from the Inside Out. Baltimore: Health Professions Press.
Wadley, V.G. and Haley, W.E. (2001) Diagnostic attributions versus labeling: impact of
Alzheimer’s Disease and major depression diagnoses on emotions, beliefs, and helping intentions
of family members, Journal of Gerontology: Psychological Sciences, 56, 4, 244–52.
Werezak, L. and Stewart, N. (2002) Learning to live with early dementia, Canadian Journal of
Nursing Research, 34, 1, 67–85.
Werner, P. and Heinik, J. (2008) Stigma by association and Alzheimer’s disease, Aging & Mental
Health, 12, 1, 92–9.
Whitehouse, P.J. and George, D. (2008) The Myth of Alzheimer’s: What You Aren’t Being Told
About Today’s Most Dreaded Diagnosis. New York: St Martin’s Press.
Whitehouse, P.J. and Moody, H.R. (2006) Mild cognitive impairment, Dementia: The International
Journal of Social Research and Practice, 5, 1, 11–25.
Whitehouse, P.J., Frisoni, G.B. and Post, S. (2004) Breaking the diagnosis of dementia,
The Lancet Neurology, 3, 2, 124–8.
Wilkinson, H., (ed.) (2001) The Perspectives of People with Dementia: Research Methods and
Motivations. London: Jessica Kingsley.
Winbald, B., Palmer, K., Kivipelto, M., Jelic, V., et al. (2004) Mild cognitive impairment: beyond
controversies, towards a consensus: report to the International Working Groups on mild
cognitive impairment, Journal of Internal Medicine, 256, 3, 240–6.
World Health Organization (1993) International Statistical Classification of Diseases and Related
Health Problems (ICD-10). Geneva: WHO.
Zola, I.K. (1972) Medicine as an institution of social control, Sociological Review, 20, 4, 487–504.
2012 The Authors
Sociology of Health & Illness 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd