Being at risk of dementia: Fears and anxieties of older adults

Journal of Aging Studies 18 (2004) 143–155
Being at risk of dementia: Fears and anxieties of older adults
Lynne Corner*, John Bond
Centre for Health Services Research and Institute for Ageing and Health, University of Newcastle upon Tyne,
21 Claremont Place, Newcastle upon Tyne NE2 4AA, UK
Abstract
Early diagnosis of mild cognitive impairment and dementia maximizes the potential benefits of early access to
specialist therapies and support. Barriers to early diagnosis include late presentation. Research has traditionally
focused on people following a formal diagnosis. Very little is known about the perceptions of older people, who,
because age is an important risk factor, can be said to be at risk of developing dementia. Changes in cognition,
competence, and personality are often dismissed as ‘normal aging.’ The views of older people were explored using
qualitative interviews. The findings reinforce existing research evidence that suggests that some older people fear
developing the condition. Participants felt uncomfortable with friends or relatives with dementia and were reluctant
to contact health professionals about memory problems. There was uncertainty about the causes of dementia,
anxieties about loss of self-identity and dignity, and long-term care. Greater understanding of this group’s views
could help inform information strategies and health and social care policy.
D 2004 Elsevier Inc. All rights reserved.
Keywords: Dementia; Older people; Cognitive impairment
1. Introduction
Epidemiological studies have identified many risk factors for dementia, including medical factors
(cardiovascular disease, history of depression, head injury), demographic factors (low levels of
education), as well as family history and genotype, although with late-onset dementia (after age
65), genotype confers only a relatively small increase in risk. However, overwhelmingly, the
greatest risk factor for developing dementia (of which Alzheimer’s disease is the most common
condition) is age itself. The prevalence of dementia increases markedly with age, doubling every 5
* Corresponding author. Tel.: +44-191-222-7968; fax: +44-191-222-6043.
E-mail address: l.s.corner@ncl.ac.uk (L. Corner).
0890-4065/$ - see front matter D 2004 Elsevier Inc. All rights reserved.
doi:10.1016/j.jaging.2004.01.007

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to 7 years after the age of 65 (Hofman et al., 1991). It is forecasted that in 25 years, 34 million
people worldwide will have dementia (Alzheimer’s Disease International, 2000).
The causes of dementia and distinguishing ‘normal aging’ from disease remain contested (Eastwood
et al., 1996; Huppert, Brayne, & O’Connor, 1994). Linguistic confusion arises because of two
meanings of the word ‘normal.’ It can either mean normative or usual, or it can mean nonpathological.
Cognitive decline is normative, that is, usual amongst older adults and increases with increasing age.
However, while memory loss, mental slowness, anxiety, or depression is not uncommon amongst
older people, dementia is not inevitable. Cognitive decline becomes cognitive impairment when the
impairment of memory, plus the impairment of at least one other cognitive function, is sufficient to
interfere with daily activities (DSM-IV, ICD-10). With regard to normal in the sense of nonpathological,
it is extremely rare to find no evidence of Alzheimer’s pathology in the brains of
nondemented, older people. A report in the Lancet from the MRC Cognitive Function and Ageing
Study (Neuropathology Group of the Medical Research Council Cognitive Function and Ageing Study
(MRC CFAS), 2001) showed clearly that in the brains from a population of older people, it was not
possible to differentiate those with dementia and those without dementia on the basis of neuropathology
alone. Again, pathological brain changes typical of Alzheimer’s disease are normative or usual
amongst older people, and the degree of pathology tends to increase with increasing age. Therefore,
it is not obvious that Alzheimer’s disease is a physical disease of the brain, in contrast to normal
aging.
Although these data remain contested (Kay & Roth, 2002), some researchers and clinicians see
no clear distinction between normal aging, or signs of memory loss, and the subsequent
development of dementia. Given this confusion, it would perhaps be understandable if the general
public, including older adults, are also confused as to the causes of dementia and dismiss changes in
cognition, competence, and personality, often the early signs of dementia, as normal aging (Rabbitt,
1992).
Little is known about the perceptions of the general public, including older adults, about the
causes and consequences of cognitive impairment and dementia (Hodgson & Cutler, 1997; Hodgson,
Cutler, & Livingston, 1999), or of the attitudes of the general public towards people with dementia
and how they are cared for. Since older adults are the people who are most likely to experience
dementia in the future, either themselves or as a caregiver, understanding their beliefs, expectations,
and perceptions about dementia, as well as their attitudes towards the possibility of developing
dementia themselves, is crucial for informing social and health care policy towards dementia and
planning future service delivery. It is also important for the design and development of appropriate
information strategies to correct any misconceptions about cognitive impairment and dementia. It will
also inform the way health and social care professionals discuss dementia with older people,
particularly, if prophylactic treatments for mild cognitive impairment (Hogan & McKeith, 2001)
emerge.
The way that services respond can make a difference to the caregivers’ ability to continue caring
and to the quality of life for both the caregiver and the person with dementia, but the problem most
commonly voiced by caregivers is the difficulty in accessing information and help (Audit Commission,
2000). In the UK, there is increasing evidence that people with dementia and their caregivers do not
get advice and help soon enough after they have realized there is a problem (Audit Commission,
2000). Misunderstandings, fears, and taboos about dementia may potentially influence presentation in
the first place. Health professionals have also been criticized for not recognizing or understanding

L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155 145
dementia (Audit Commission, 2000) or for assuming that the symptoms of dementia were due to old
age (Alzheimer’s Disease Society, 1995). In the UK, the first point of contact is usually a family
doctor or general practitioner (GP). However, a national survey in the UK found that less than one half
of GPs felt it was important to actively look for early signs of dementia and to make an early diagnosis
(Audit Commission, 2000; Renshaw, Scurfield, Cloke, & Orrell, 2001). Family doctors also report that
it is difficult to know what to tell patients (Vassilas & Donaldson, 1998), and this is hampered by a
lack of knowledge about what people understand and believe about dementia. Dementia is still a
condition associated with considerable misunderstandings and stigma (Blum, 1991; Cotrell & Schulz,
1993; Goffman, 1968; Jolley & Benbow, 2000; Macrae, 1999). High-profile figures like Ronald
Reagan and the author Iris Murdoch, together with the activities of organizations like the US
Alzheimer’s Association, the UK Alzheimer’s Society, and Alzheimer’s International, have raised
public awareness of the fact that dementia is caused by underlying diseases such as Alzheimer’s
disease. Within this context, media articles present a negative discourse and fuel stereotypes by
focusing on the most debilitating and despairing features of dementia (Jolley & Benbow, 2000). This
may contribute to the fear of dementia, in turn, producing additional problems for people with
dementia, those who fear they may develop it and health professionals diagnosing it (Jolley &
Benbow, 2000).
2. Study design and methods
The data presented in this paper are part of a wider study of quality of life from the perspective
of older people with dementia and of their caregivers. The views of older adults (over the age of
60), who did not have a diagnosis of dementia nor were currently caring for someone with
dementia, were sought. It was hypothesized that they were the peer group of people currently
experiencing dementia and also, because of the risk factor of age, the group most likely to
experience dementia, either themselves or as a caregiver, in the future. As we were interested in the
range and kinds of understandings conveyed, qualitative in-depth interviews were the basis of the
study design.
Participants were purposively sampled from local day centers for older people in the study area to
reflect a range of socioeconomic circumstances. We also sought a range of ages (62–93), with a median
age of 82. Amongst the sample interviewed, those at highest risk of dementia were those who were
oldest.
Although not an initial sampling criterion, as data collection and analysis progressed, participants
were specifically sought who had relatives who had dementia. This subgroup was not perceived to be
at greater risk of dementia, but there is some evidence that they may be more likely to fear dementia
(Hodgson & Cutler, 1997). Indeed, we experienced some difficulties recruiting for the study. There
were 25 people initially approached, but 10 declined to take part—a much higher rate than
experienced in other similar studies. Those who declined were asked if they would be willing to
give a reason for refusal. Each of the 10 cited being uncomfortable with discussing the topic of
dementia. Four people specifically stated that they had had a parent who had dementia and felt that
talking about it would raise painful issues for them. We explained that because of this experience,
their views would be especially useful and interesting, but they still refused and their wishes were
respected.

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Table 1
Interview guide
Perceptions of risk factors: age; genetic, family history; head injury; environmental factors
Cause: normal aging or pathology?
Disease trajectory: course of progress
Perceptions of experience of dementia
Care for people with dementia: long-term care
Information and education: role of media
2.1. Data collection and analysis
A series of qualitative in-depth interviews with fifteen older people were conducted. Ten participants
were female, all were white and either married or widowed. Ten lived in warden-controlled sheltered
accommodation, two lived with their daughters and three lived alone. All participants were interviewed
on one occasion, and each interview typically lasted between 1.5 and 2.5 h. Interviews took place in the
participant’s home and, with their permission, each interview was tape-recorded and transcribed
verbatim. An interview guide (see Table 1) was used in each interview, comprising a list of topics
rather than specific or structured questions. It was used by the interviewer as a memory aid to help
guide the discussion. This was initially compiled from themes that had emerged from a review of the
relevant literature and data themes from the wider study referred to earlier on the quality of life for
people with dementia and their caregivers. The topic guide was not fixed and was amended after several
interviews to include new concepts and topics that arose. The interview tapes were transcribed within 2
days of the interview, and detailed sets of notes were made, including key themes and issues, which
were emerging, along with extensive verbatim quotes. Data collection was halted when data saturation
was reached and no new themes or topics were being generated. The data were analyzed thematically
using ‘Framework’ (Ritchie & Spencer, 1994). This is a widely used manual method for organizing,
indexing, charting, and interpreting themes from qualitative data. Verbatim quotes are used to present
themes from the data.
3. Themes from the interviews
3.1. Cause and onset: normal aging or brain disease?
All participants presented a decline in memory as an expected aspect of growing older, and all
considered that they experienced memory problems. They also all conceptually linked memory loss as
being a characteristic of dementia. The participants reported uncertainty as to the causes of dementia:
what was considered to be disease and what was normal aging? All participants referred in their
narratives to the concept of senile dementia. Implicit in this view was the assumption that dementia was
specifically associated with aging:
But at the same time everybody has got to grow old and you’re bound to lose your faculties as you get
older—you can’t help it really (D1, page 39, line 12).

L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155 147
This uneasy relationship (Gubrium, 1986) had implications for both their perceptions of the causes
and onset of dementia and the likelihood that they themselves might develop it. Given the
conceptual link that memory loss was the initial indicator of the onset of dementia, the meaning
of memory to the individual, specifically, any perceived problems with memory, became significant
for some participants:
Oh, I’m turning into a typical dotty old lady; I can’t remember a thing. My memory is so bad these
days (D3, page 42, line 4).
Many of the accounts were embedded with stories to illustrate how any memory loss experienced
could be ‘‘interpreted as insidious markers of the onset of Alzheimer’s disease or other dementias’’
(Cutler & Hodgson, 1996):
I go upstairs and forget what I’ve come for. I write...I have a diary there and I write everything
down that I’ve got to do—all my appointments, dentist, everything. I think Oh God! I’m losing my
marbles (D6, page 32, line 2).
My memory is getting worse. I go upstairs...and forget what I’ve gone for...and I do worry that I’m
slowly getting...senile dementia (D6, page 28, line 7).
As soon as you get forgetful you think: ‘‘is it going to happen to me?’’ It’s frightening really (D5,
page 19, line 8).
For others, however, forgetfulness or memory loss was contextualized as being normal for them over
the life course. They did not perceive any significant change in their memory, and for these individuals,
developing dementia was not assumed to be inevitable:
...you get very forgetful (laughs). I mean my daughter goes in there and she will say ‘‘I’ve forget
what I’ve come in here for’’. When I was 40 I used to do the same. I used to go in the cupboard
and I used to say ‘‘what have I come in here for’’ but I’m no worse now than I was then (D2, page
7, line 21).
3.1.1. Anxiety about memory loss and dementia
The degree of anxiety that any memory loss caused varied between participants. All participants
had had contact with someone who had dementia (a friend, neighbor or relative), even if they had
not been a main caregiver. Studies have shown that people who have a relative with Alzheimer’s
disease are more likely to fear that they will develop the same condition (Hodgson & Cutler,
1997; Jorm, 1990). Our findings supported these findings in that participants who reported having
a close relative who had dementia were more specifically concerned about developing Alzheimer’s
disease:
...and this is one thing I do just dread, and that is Alzheimer’s, very much so, because my father had it
(D1, page 20, line 31).

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...the mere thought of dementia terrifies me...more than any other thing [disease] to die from...like
cancer (D15, page 30, line 4).
Dementia was described by some as a disease of the brain. Implicit in this view is the belief that
dementia is something that happens to some people, but not necessarily to others (Cheston & Bender,
1999). These participants used the language of disease, cure, and treatment, reinforcing the assertion of
Gubrium (1986) that if the disease is medicalized, then there is also potential of a cure (Cheston &
Bender, 1999):
Well, this Alzheimer’s disease, it’s something that goes wrong with the brain, I think. I read that the
brain is diseased and this is what causes the symptoms (D8, page 4, line 7).
They know so little about it, there doesn’t seem to be anything they can do...treatment or that. But
they usually crack it eventually, I mean they might not...cure quickly or anything, but there’s some
talk of that isn’t there? (D8, page 10, line 6).
...they will eventually, probably, find some sort of medical treatment, or medicine, or something, that
will help (D1, page 39, line 12).
However, this presents a paradox: If they believe that dementia is a pathological condition, what is
normal? (Gubrium, 1986). For the participants who considered dementia to be normal aging, it does not
make sense to them to search for a cure (Gubrium, 1986). Their narratives suggested no sense of urgency
amongst these participants to find a cure. This was linked to a reduced sense of value for older citizens in
society and dulled expectations:
when you’re old, you’re on the scrap-heap, or at least you feel as if you are, that is people make you feel
as if you are. I suppose I think that the people who have Alzheimer’s and dementia are at the bottom of
the scrap heap, and...most people would just think they should die... (D7, line 31, page 17).
I don’t think it’s right that money is taken away from children and the like...to treat the elderly and
the demented (D14, line 7, page 13).
For other participants, they consciously tried not to think about the possibility of developing
dementia, which was perceived to be a condition about which little was known and they acknowledged
that there was no cure or treatment:
No, I daren’t let myself think about it. I just push it to the back of my mind, and try not to think of it. I
mean when I have an itch or a bad head, I don’t think I have cancer, but then again, they know a fair
bit about cancer now don’t they? (D8, page 29, line 8).
3.1.2. Additional causal factors of dementia
Participants actively distanced themselves from the possibility of getting dementia by rationalizing
that people with characteristics different to their own were more likely to develop dementia. Some
participants held the view that dementia was more likely to occur amongst people with a high level of

L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155 149
intelligence or education. Yet, studies have reported that it is a low level of education which confers
increased risk of developing dementia (Letenneur et al., 2000). Messages from the media were selected
to support their views:
Well I read that Ronald Reagan had it, didn’t he, and Iris Murdoch—very well educated people and I
think you find that. Fred Fletcher from the Rotary Club, now he had it and he was a very bright chap,
very smart, he held down a top job (D4, page 18, line 5).
Oh I’ve always been very average, very average indeed, I’m not brainy or that (D4, page 19, line 17).
Stress and inactivity were perceived to be triggers of cognitive decline:
I think it is the pressure. I think it is the pressure of work these days (D1, page 22, line 1).
You’ve got to keep on doing things...Once you stop I’m quite sure that’s when it gets much worse
(D8, page 28, line 3).
If you are over anxious about things, anxiety would help, you know, bring it on, I think (D2, page 13,
line 21).
There was also a perception that levels of dementia were on the increase:
I think now I am quite sure that people are getting Alzheimer’s much younger than they did. It didn’t
used to be such a terrific problem until people got much older and I’ve heard the doctor say that he’s
got more patients with Alzheimer’s (D1, page 21, line 29).
3.2. Seeking advice and presentation to health professionals
Participants who discussed being concerned about their memory during the course of the interviews
felt there was little point contacting health professionals, such as their GP, as they perceived there was
little that could be done, especially when dementia was perceived to be inevitable and there was no cure:
I don’t think so, not really, I don’t think there is much they can do about it...I don’t have any faith in
what they could do (D2, page 20, line 24).
There’s not much point going to your doctor, really is there, I mean it’s not like they can cure it or
anything (D1, page 30, line 4).
Several participants who were concerned about memory loss because of family history had not
mentioned this to their family doctor, citing both a fear that they might be developing dementia and an
assumption that the doctor would make the family connection and investigate further if necessary:
...it never really occurred to me to mention it to be honest...I was there for other problems and that
and...well, I suppose I’m frightened that I hear what I don’t want to hear. I’m mean he’s been our
doctor for years and years and it’ll be in my notes (D6, line 18, page 16).

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I’d go out my way not to mention it, play it down...if I’ve got it, I’d rather put off the inevitable as
long as possible (D11, line 18, page 18).
3.3. Perceptions of the experience of dementia
Participants who feared the development of dementia focused especially on a perceived loss of
independence, control, identity, and dignity. Comparisons were made with physical illnesses:
Well, I think, perhaps, (sighs) well, you can lose a leg or you can have some other physical illness, but
you are still in control, but once you lose control, you see it doesn’t really affect you, you can’t
remember it so it doesn’t really affect you...it’s the thought of it (D1, page 15, line 4).
Well it’s people that can’t remember anything or anybody. They can’t go out on their own or do their
shopping or anything like that and they forget who their relations are...I dread it (D2, page 5, line 19).
These participants dreaded developing dementia themselves and considered it to be appalling:
I mean your life, I think is over...and I know people that have nursed people with dementia and they
end up nearly as potty as they are because it’s so frustrating. It’s one of the most appalling, frustrating
diseases because...you can’t remember who has been and done things for you or anything. Oh! no I
think it’s sad, that, I think it’s terrible (D1, page 30, line 22).
Their perception that people with dementia actually were happy and content was, then, especially
interesting. This view was particularly strong amongst those who had cared for a relative with dementia:
Well, I think for the person themselves, certainly...actually my father was...happy (D1, page 16, line
35).
Oh I think when people get dementia then their quality of life has gone completely and they don’t
know anything, they don’t remember anything, they don’t know anything and therefore they are
usually very content (D1, page 9, line 14).
These participants talked of the burden of care (Gubrium & Holstein, 1998) to family members, and
caregivers were presented as the real victims (Robertson, 1991), not the person with dementia:
But you see it’s the family I feel sorry for, the ones who have to look after them, they’re the ones who
really suffer (D1, page 30, line 4).
Despite acknowledging that dementia was now viewed as an illness, dementia was still perceived to
have a stigma for the family.
Well you don’t hear quite so much about that and I think people if they’ve got a member of a family
with it, I think it is one thing that they try and cover up (D1, page 35, line 32).

L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155 151
Never heard of that when I was young...of course anybody was mental, you never thought, you
didn’t talk about it. It was kept under cover, they didn’t get any sympathy for that it was never
considered as an illness but it is you know (D2, page 13, line 27).
3.4. Responses to people with dementia
An assumption in all accounts was that the appropriate place for people with dementia to be cared for
was in long-term care, and that admission to this setting was inevitable. This reflected a belief that there
was nothing that could be done to improve the quality of life for people with dementia and, therefore, it
remained important that basic care was provided (Gubrium, 1986):
All you can do is provide basic care, make sure that they’re well fed and watered, and clean, you
know. I think that’s very important (D1, page 30, line 19).
Many beliefs about dementia had been formed from the negative experience of visiting friends and
relatives with dementia in long-term care. Participants explained why they did not now visit friends who
had dementia, or those caring for them:
I tell you what is so difficult when they’ve got dementia you get no sort of feedback. You...they don’t
know, they don’t remember what you’ve done. They don’t remember if you’ve been to see them,
therefore, it’s different and people, I think they fight shy of going to see people. I know certainly that’s
happened with Rita (D1, page 26, line 1).
Amongst the reasons they gave was a fear that they may develop dementia, and they found this
difficult to confront. Responses to people with dementia can depend on our ability to conceptualize such
potential personal losses (Cheston & Bender, 1999) and are based on our experiences of dementia.
Participants considered how they would like to be treated should they themselves develop dementia,
referred to by Post (1995) as moral solidarity. Dementia was presented as the condition they most feared.
Admission to long-term care was a major source of anxiety (Reed, Payton, & Bond, 1998) and
compounded any fear of developing dementia.
One participant recalled how she and a friend had been frightened of visiting a friend with dementia,
who had been admitted to a nursing home:
Oh! I think that’s very upsetting. I think I hope I don’t live to get like that you know. You are bound to
think like that (D2, page 23, line 7).
They suddenly get frightened about going to see...I think they can put themselves...see themselves
perhaps landing up in the same position (D1, page 19, line 8).
The distinction was made between visiting someone who was ill in hospital and someone who was in
a nursing home:
I’ve been amazed how people, that she had good friends and entertained and everything, they’ve just
never bothered, when she once just went into a home and lost her memory, they did occasionally, the

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odd one, when she was in (hospital). Now that was strange because now people will go and see people
in hospital. I suppose there are some older people that although they have a dread of being in hospital
themselves, they will still go and see people in hospital but they don’t want to go and see them in a
home (D1, page 27, line 1).
Examples of behavior were recalled by this participant to legitimize control from health professionals
(Robertson, 1991).
Well because they’re so out of control and they are not really the people they were. I don’t know the
others...of course, sometimes, they get the wrong clothes on and they’ll be very loud and noisy and
very aggressive, very aggressive. But I think more than anything it is their quality of life—they’re just
quite happy and if they don’t get the same chair, they get very vicious with the person that has taken
their chair and come very possessive. Have to have the same chair and they won’t have...some of the
nurses, they can be very rude to them if they’ve been perhaps rough handled or something (D1, page
29, line 5).
In this case, stigmatizing labels and passive terms (Goffman, 1968; Robertson, 1991) serve to
infantalize and depersonalize the person with dementia. Participants, in their narratives, talked of people
they knew with dementia in the past tense, even though they were very much a part of their present. This
reflects the assertion of Goffman (1968) that the person becomes a stranger, ‘someone I once knew,’
perceived to be a mere shell of what he or she was (Gubrium, 1986).
4. Summary and conclusions
Preliminary data from in-depth interviews with 15 healthy older adults in the UK reinforce existing
research evidence that some older people fear developing dementia (Hodgson et al., 1999). The study
has limitations. It is a small, qualitative study, and examining the fears and anxieties of older people
about dementia was not the focus of the original research design. We do not know from the data
presented here how generalizable the findings are. But the data suggests considerable diversity amongst
older people and that there is a need to further investigate the knowledge, expectations, fears, and
anxieties that a population of healthy, older adults, at risk of dementia, has about aging, cognitive
impairment, and dementia. This is important if we are to identify the range of expectations and the
information needs of healthy, older adults about cognitive impairment and dementia. This, in turn, might
help to inform strategies, which voluntary and statutory organizations might develop for providing
support for older people, older people with dementia and those caring for them.
A greater understanding of the personal and social characteristics that influence perceptions and
beliefs about dementia is important. For example, although all participants had shared beliefs about
dementia, some were more anxious about themselves or a close family member developing dementia
than others were, especially if they had a relative with dementia. The participants were confused as to
whether the development of dementia was normal aging or should be attributed to disease. Their
perceptions were intertwined with an expectation of declining cognitive ability with old age, even if this
had not been their experience. Just as person-centered care has been illustrated to cause increased anxiety
and depression amongst formal and informal care givers, as they can no longer medicalize dementia as a

L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155 153
disease, this juxtaposition caused increased anxiety amongst older people, who feared they might
develop it. Mild memory loss was, on the one hand, perceived to be a normal part of the aging process,
but if it was not normal—were they developing dementia?
While this study focused on older people, the views of middle-aged persons are also important to help
understand if, at what stage, and why memory loss is associated with a fear of developing dementia.
There is a growing debate on if and how to identify individuals with mild cognitive impairment, and
more background data on this group’s views would make an important contribution to this debate. What
is the impact going to be on people diagnosed with dementia, given the anxieties identified and the trend
towards earlier intervention and diagnosis? A person’s self-concept is fundamentally doubted when
given the powerful label of a diagnosis of dementia, and they may experience spoiled identity (Charmaz,
1983; Goffman, 1968). Older people’s attitudes to cognitive impairment and dementia are socially
constructed. They are formed over the life course and are deeply embedded in their cultural biography
and life experiences. While health and social care professionals are encouraged to embrace the new
culture, which (Kitwood, 1997) espouses, focusing on the personhood of people with dementia, the data
suggest that many older people have not been exposed to this. The development of dementia was
perceived to be an end point, signifying the ultimate loss of control, identity, and dignity, and from this
perspective, the experience was perceived to have few positive features and one to be feared. This
suggests that older people diagnosed as having dementia and their caregivers cannot automatically be
encouraged to view any positive aspects of the experience of dementia or be socialized to take on a more
liberated identity, which the academic literature espouses, when, through their lifetime, the presentation
of dementia in their culture has been one of despair and loss. This may help to clarify why older people
do not present to health professionals for advice in the first place (Audit Commission, 2000; Boise,
Morgan, Kaye, & Camicioli, 1999) and their reactions following a diagnosis of dementia. Understanding
older peoples’ perceptions about dementia may help to make the disclosure of a diagnosis of dementia
less despairing for the person with the diagnosis and for family members (Post, 2001). Increased
understanding of the ‘prediagnosis phase’ (Woods, 2001), beginning with a focus on the person’s beliefs
and knowledge, may also facilitate the development of successful coping strategies (Husband, 1999;
Woods, 2001).
One of the key findings is that older people who do not have dementia avoid talking and thinking
about dementia and do not plan for it. Are there parallels with other illnesses associated with old age?
The data do not tell us if and how this response differs to other prevalent diseases of old age associated
with high mortality, such as cancer or heart disease. Further comparisons would be helpful, as would
more information to contrast older people’s responses to conditions associated with high morbidity, such
as arthritis.
Alzheimer’s disease is a disease of exclusion (Gubrium, 1986), and people with dementia and their
caregivers can often feel tucked away at the margins of society. There is evidence that people with
dementia and their caregiver’s quality of life is negatively effected, as social support networks break
down because of the stigma surrounding dementia (Jolley & Benbow, 2000). This may have an effect on
the quality of life of people with dementia and their caregivers and have significant implications for the
management of dementia. The data from this study suggest that older people experienced difficulties in
confronting their fears and anxieties about developing dementia and admission to long-term care. A
consequence of this was that they were less likely to visit friends or family with dementia or those caring
for them. The social, political, cultural, and economic context is important in determining this
experience, as people rarely operate in isolation, and the perceptions and reactions of family, friends,

154
L. Corner, J. Bond / Journal of Aging Studies 18 (2004) 143–155
professionals, the wider community, and society, in general, to dementia are all relevant to the issue.
Improving public understanding about the experience of dementia may help improve responses to people
with dementia and their caregivers and, in turn, help improve the quality of life for people with dementia
and those caring for them.
Acknowledgements
Lynne Corner is an Alzheimer’s Society Research Fellow, and this work is funded by the Alzheimer’s
Society, UK.
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