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A bio-psycho-social approach to dementia

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A bio-psycho-social approach
to dementia
Steven R Sabat
Learning objectives
By the end of this chapter, you will learn that people with dementia:
+are capable of learning new things
+can be sad about and embarrassed by their condition
+do not lose their selfhood
+can be powerfully affected by how they are treated by others
In the coming decades, barring medical interventions that can prevent or
reverse the occurrence of Alzheimer’s disease and other types of dementia, the
numbers of people affected directly and indirectly will reach into the tens of
millions and the financial costs required to care for such people will be in the
hundreds of billions of US dollars (ADRDA 2000) (see Chapter 1). It is of
paramount importance in the absence of such interventions that we understand
the effects of dementia in order to develop more effective means of treating and
sustaining those who have been diagnosed. If we assume that dementia is the
outcome of brain damage and that much of what a person does that can be
seen as being ‘abnormal’ in one way or another (such as anxiety, agitation,
anger, etc.) is directly caused by the brain damage, we are then left with the job
of ‘managing the patient’ so as to make him or her more and more comfortable
and less and less of a burden on caregivers. Management is often accomplished
via the use of drugs, including anti-anxiety and antidepressant medication, in
addition to drugs that may enhance synaptic transmission between neurons in
the brain and thereby improve aspects of memory, such as the ability to recall
recent events.
There is a very important assumption in the above paragraph: many, if not
all, of the ‘symptoms’ of dementia are, in one or another way, the direct
outcome of the neuropathology caused by the disease process. This assumption
is the foundation of the purely biomedical approach that dominated our
understanding of dementia for decades (Katzman et al. 1978). In the past two
decades, Kitwood (1997, 1998) called attention to significant problems with a
strictly biomedical approach and, increasingly, research has shown that a
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of such people is affected by at least four factors (Harris 2002; Killick and
Allan 2001; Sabat 2001; Snyder 1999; Wilkinson 2002):
+brain damage,
+the person’s reaction to the effects of the brain damage
+the ways in which the person is treated by healthy others
+the reactions of the diagnosed person to the ways in which he or she is
treated by others.
Kitwood (1990) captured some of these factors in the following formula:
where SD is senile dementia, NI is neurological impairment, and MSP is
malignant social psychology.
Malignant social psychology was Kitwood’s term for a style of interaction
and relationship which had the effect of diminishing a person’s personhood
such as is seen in the depersonalizing treatment given to persons with dementia.
In the quest for ways to sustain and care for people with dementia so as to
enhance as much as possible their quality of life, it is important to examine
closely each of the different factors so as to understand what people with
dementia can and cannot do and under what conditions their abilities are
facilitated as opposed to inhibited. It is important, in other words, to identify
correctly what constitutes a symptom of neuropathology as opposed to an
appropriate emotional reaction to an extremely undesirable situation or to
dysfunctional social treatment. This chapter will examine the biological, the
psychological, and the social domains, so as to develop a clear picture of a
bio-psycho-social approach.
The biological domain
As described in Chapter 1 the biological and clinical aspect is different in the
different types of dementia. Depletion of certain transmitter substances occurs
in Alzheimer’s disease, but not necessarily in vascular dementia. A person with
a vascular dementia might not have damage to the hippocampus, but people
with Alzheimer’s disease do have that damage. In addition, people with
multi-infarct dementia have had several small strokes, but people with Alzhe-
imer’s disease have not. As described in Chapter 1, Alzheimer’s disease is a type
of dementia said to involve a depletion of a variety of neurotransmitters as well
as the purported development of senile plaques and neurofibrillary tangles
(Gaines and Whitehouse 2006). Over the course of the disease, there is a
significant loss of neurons in the brain. This section will focus on the
relationship between damage to particular areas of the brain (damage includes
the loss of neurons) and losses in particular cognitive abilities and skills
associated with Alzheimer’s disease.
Dementia involves brain damage that can affect a variety of cognitive abilities.
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first areas of the brain that is affected by Alzheimer’s disease is the hippocam-
pus, and the effects of damage here involve defects in what is known as
‘explicit’ memory. Among the ways by which information can be retrieved from
memory are explicit and implicit forms of retrieval (Squire 1994). Explicit
memory involves the ability to recall consciously or to recognize specific pieces
of information on demand. So, when we ask someone what today’s date is, or
what month it is, we are asking the person to recall in a conscious way a
specific piece of information. Thus, when a person with Alzheimer’s disease
asks a question and we answer it and then, five minutes later, the person asks
the same question again as if it were the first time he or she was asking, we are
witnessing a failure of recall. If we then ask the person, ‘what did I just tell you
five minutes ago?’ the person might say, ‘I don’t know’, and that would be
another example of the failure to retrieve information via recall.
In some instances, one may change the format of the question from ‘what
day of the week is it today?’ (to which the person with Alzheimer’s disease said,
‘I don’t know’) to a multiple-choice format (‘Is it Tuesday?’, ‘Is it Friday?’, etc.)
and with this format, the person might identify the day correctly. This can
happen because recall is much more difficult than is recognition, which is the
method of retrieval being used with a multiple-choice format, and this
phenomenon is seen in many people with Alzheimer’s disease. Therefore, one
should not assume that a person’s failure to recall information means that the
person cannot remember that information. Recall and remembering are not the
same things. Recall is one way to remember, but there are other ways to do so,
including recognition (Sabat 2001).
Another form of memory, apparently involving mechanisms of retrieval
that are different than those used with explicit memory, is known as ‘implicit’
memory, and this is defined as a change in behaviour that can occur as a result
of an experience that the person is not consciously aware of having had (Grosse
et al. 1990; Howard 1991; Roedigger 1990; Russo and Spinnler 1994).
Box 4.1 Case example
In what is called a word-stem completion task, a person with a memory
dysfunction, such as AD, is presented with a list of words including the word,
‘defend’. The person’s memory of the words on the list can be tested in
different ways. In one format, testing explicit memory, the person can be
given the word-stem, ‘def —’, and then asked to complete the blank so as to
make a word that he or she studied on the list presented earlier. In a
different format, testing implicit memory, the person would be asked to
complete the blank so as to form the first word that comes to mind. Note that
in this latter format, there is no mention of the list of words presented
previously. When employing the first format, using explicit memory, it is not
uncommon for the person being tested to respond by saying, ‘what list’? By
asking that question, the person with AD exhibits a dysfunction in explicit
memory, specifically recall. The same person who appears to have no
memory of having studied the list of words will complete the word-stem
correctly if asked to complete the blank so to make the first word that comes
to mind. Note that there is a plethora of words that begin with ‘def —‘, so
that one could not be ‘lucky’ in guessing correctly simply because there are
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Such findings have been shown in people with AD in the mild to moderate
stages (Randolph et al. 1995; Russo and Spinnler 1994). Thus, although the
ability of a person with AD to recall information may be compromised, his or
her ability to recognize the same information may be less compromised, and the
ability to learn new information can be intact, even if the person does not recall
having learned that information.
A specific version of the problem with recall is observed in what are called
‘word-finding’ problems. The person with AD, while speaking, has difficulty in
finding the word or words that he or she wants to use. Again, however,
although the person may have a severe problem recalling the words in question,
it is often possible for him or her to recognize the sought after words if the
healthy partner in conversation provides some possibilities.
Box 4.2 Case example
Person with dementia: ‘I went to see the uh, the, the, person who takes care
of me when I’m not well physically.
Respondent:: ‘Do you mean the dentist?’
Person with dementia: ‘Well it could be, but not in this case.
Respondent:: ‘Do you mean a physician?’
Person with dementia: ‘Yes.’
(From Sabat 2001)
Organization of movement
Damage to ‘association’ areas of the parietal lobe of the brain may result in
‘apraxia’, or the inability to organize in the correct order a sequence of
movements. Thus, although not paralysed, a person might not be able to:
+tie his or her shoelaces
+button a shirt
+sign his or her name
+use eating utensils correctly.
It is important in each case to establish that the person can identify correctly
the object in question (the eating utensils, the shirt, the shoes and laces),
because if he or she cannot identify the object, it would be incorrect to say that
the person’s inability to use the object was due to a problem with the
organization of movement. Another form of apraxia may, from the point of
view of Brown (1972), be seen in instances of speech sounds that are misplaced
so that the order of the sounds is incorrect, interfering with the communicative
process. Brown proposed that some fluent aphasias might be considered
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Visual identification of objects
Following damage to so-called ‘association’ areas of the occipital lobe of the
brain, a person may see objects clearly but may be unable to identify them by
name. This problem is known as visual agnosia and it can result from damage
due to Alzheimer’s disease and other dementias. A specific instance of this
problem is ‘prosopagnosia’, or the inability to identify another person by sight,
by looking at the person’s face. Thus, a person might be able to see and even
acknowledge all the details, or features, of an object, but will be unable to
organize those features into a coherent whole and name the object or person as
the case may be.
Exercise 4.1 Different ways of interpreting behaviour
Consider the following:
You are a staff member at a day centre that serves people including those
diagnosed with dementia. You enter a room with a wardrobe containing
participants’ coats, and you see one of the participants who is diagnosed with
dementia reaching into the pockets of one coat, looking at the contents, putting
them back, and repeating this process with the next coat and the next. What do
you assume about this behaviour and what do you do?
How might our different views of what influences behaviour affect how we
interpret this behaviour?
If the staff member’s understanding of people with AD is one that emphasizes
such persons’ defects, the staff member might well view this behaviour as a
socially inappropriate ‘symptom’ and proceed to stop the person from continu-
Imagine you did not choose to intervene but simply watched the participant
move from coat to coat, looking at the contents of the pockets of each and
replacing contents, until he came to one particular coat. When he looked at the
contents of this particular coat’s pockets, he replaced the contents in the coat
pocket, but then took the coat off the hanger and put the coat on. And, most
significantly, it was his coat. It is true that going through the pockets of coats
that belong to others is inappropriate. It is the case, however, that the intention
of the person with AD in this example was not to act inappropriately, to invade
the property of others or violate their privacy.Rather, the man was simply trying
to find his coat, which he could not recognize by sight, perhaps not recalling
which coat he wore that day. He did know that his coat pockets contained his
property and he knew, consciously or unconsciously, that he would recognize
his belongings when he saw them. Thus, his behaviour was not simply some
species of ‘social disinhibition’ resulting from brain damage caused by AD, but
an adaptation to the effects of AD.
How might it feel for a person not to be able to recognize his own coat by sight,
or not to be able to put on a shirt or a pair of trousers or to sign his or her name?
This is very much a psychological issue and it is to such matters that we now
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The psychological domain
Understanding what Alzheimer’s disease or another type of dementia does to a
person psychologically requires more than simply observing his or her behav-
iour from afar or examining standard neuropsychological test results. Indeed, it
requires that we engage that person as a person so as to understand what he or
she is experiencing (Laing 1965; see Chapter 2). To assume that a person would
not have any reactions to the loss of his or her ability to use eating utensils, to
tie shoelaces, sign his or her name, recall what happened moments ago, spell
simple words, would be to assume that the person in question was quite
dysfunctional. To assume that depression, anxiety, agitation, so-called ‘wander-
ing’, and the like, are symptoms of Alzheimer’s disease in the same way that
fever is a symptom of malaria, is to depersonalize the individual in question
(Bender and Cheston 1997; Harris 2002; Kitwood 1997; Kitwood and Bredin
1992; Sabat 2001). What do we discover when we engage people with AD as
people, even as partners in research?
Snyder (1999) interviewed people recently diagnosed with probable Alzhe-
imer’s disease and, in so doing, revealed much about their reactions to the
symptoms, the diagnosis, and the ways in which others treated them. Some
people reacted strongly and negatively to the treatment they received from the
medical personnel involved in arriving at and communicating the diagnosis. For
example, Bea described the neurologist who interviewed her:
He was very indifferent and said it was just going to get worse …If he had
just shown a little compassion. He was there to diagnose my problem, but
he wasn’t there to understand my feelings. He had no feelings for me
whatsoever. I’ve hated him ever since. Health care professionals need to
be compassionate.
(Snyder 1999: 18)
Another of Snyder’s interviewees, Betty, a retired social worker and former
faculty member at San Diego State University, discussed health care profession-
als whom she encountered during the process of being diagnosed:
They’re busy wanting to climb up to the next rung on the ladder. That’s
very human. I don’t blame them. But they don’t really accept the
significance of illness for people. They know the diagnosis, but they don’t
take time to find out what it truly means for that person. This casualness
with which professionals deal with Alzheimer’s is so painful to see …You
have to really be willing to be present with the person who has
Alzheimer’s. But there are some people who don’t want to learn, and it’s
the looking down on and being demeaning of people with Alzheimer’s
that is hard to watch,
(Snyder 1999: 123–4)
Connell et al. (2004) have found these experiences to be similar in many ways
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Both women felt depersonalized by the health care professionals who
informed them of their diagnosis, and who seemed to lack any interest in
exploring with them what the diagnosis meant to them, how they felt, or in
extending to them any human compassion or caring. Still, one should not
assume that the professionals in question were callous, uncaring people. So why
did they behave as they did? Among the possible reasons is how the
professionals positioned Bea and Betty as well as how they positioned
themselves (Harré and van Langenhove 1991). That is to say, the professionals
understood their roles as being limited to communicating the facts of the
diagnosis and nothing more. They did not think that there was any reason to
discuss anything further with their patients, perhaps because there was nothing
they could do to stop the disease from progressing toward its eventual
conclusion. In a subtle way, though, they may have been incorrectly positioning
Bea and Betty negatively as people who, because of their illness, would either
have no particular reaction to the news, given that they have a form of
dementia, or lack the ability to engage in any kind of discussion about what the
news meant to them.
It would be incorrect to assume that interactions of this type occur in each
and every situation between health care professionals and their patients, but it
surely was true in these cases, as well as in the case of Dr B (Sabat 2001),
whose internist commented that ‘treating a person with Alzheimer’s is like
doing veterinary medicine’. Under these conditions, the person with Alzheimer’s
disease feels ignored, unworthy of being treated as a human being, and
someone who is defined to a great extent, if not completely, by his or her
diagnosis. Betty said, ‘A person with Alzheimer’s disease is many more things
than just their diagnosis. Each person is a whole human being’ (Snyder 1999:
Once persons are positioned socially as nothing more than instantiations of
a diagnostic category, their essential humanity, including their intellectual and
emotional characteristics, needs, and their social personae beyond that of
‘demented, burdensome patient’ become more and more invisible and can
ultimately be erased. When viewed in this way, the extent to which such people
can enjoy any semblance of a good quality of life is correspondingly reduced
and this, in turn, will require increasing expenditures of resources in order to
‘manage the patients’ instead of interacting with them as persons in ways that
would not lead to conflict, disparagement, and the resulting need for ‘manage-
Although Bea commented that she often felt ‘nearly invisible’ in social
situations, she did perceive others’ apparent discomfort about her diagnosis and
her problems with aspects of memory as well as with organizing and directing
bodily movements such as shaking hands. Others in her social milieu seemed to
position her negatively as being far more disabled than she actually was, and
treated her as if the negative positioning were actually valid, thereby creating a
dramatic constriction of her social world to the point of her being isolated and
increasingly dependent upon her husband. She was well aware of this entire
dynamic: ‘I’m isolating him as well as myself and I’m not being fair to him’
(Snyder 1999: 24).
Feelings such as these, that arise from being negatively positioned by others
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banished (Kitwood 1998) create internal conflict within the person with AD
and diminish the person’s sense of self-worth.
It may seem strange that the two women who were quoted verbatim above
could be treated as they were, given that they expressed themselves clearly,
cogently, and with grace. Nothing in what they said or how they said it could
conduce to the idea that they were cognitively compromised, yet they were still
treated by healthy others in ways that could be described as ‘dysfunctional’ and
‘malignant’. It is precisely this confluence of facts that underscores how
powerful an influence a diagnosis can be. What is the foundation of this sort of
treatment? Two possibilities spring to mind:
+There is a stereotypic view, promoted by professionals, the public press,
entertainment media, and the like, that focuses on the defects that AD can
ultimately cause, and simultaneously ignores the person’s remaining intact
+There is the tendency for diagnostic overshadowing to occur such that all
reported ‘defects’ in people thus diagnosed are due to the disease alone and
not to the ways in which the people thus diagnosed are treated by others.
There is, however, the testimony of people in the moderate to severe stages of
AD, who express appropriate anger, frustration, sadness and embarrassment
regarding the losses that they have experienced. Dr M was very clear about this
when she spoke about writing and typing, things that she once did with great
facility: ‘Now it is so miserable a chore that I avoid it as much as possible. And
all these things take ridiculous amounts of time …as to how my symptoms
affect me, do not think I am just being frivolous if I say they drive me crazy’
(Sabat 2001:,115).
Add to this the fact that others see the person with Alzheimer’s disease
principally in terms of what he or she cannot do and is it any wonder that such
a person would feel depressed? Indeed, for a person not to feel depressed in
such circumstances would be ‘inappropriate’ and worthy of being described as
‘having no insight’ into, or being ‘blissfully unaware’ of, one’s problems. We
could just as easily observe that to feel all of the above negative emotions in the
face of the effects of Alzheimer’s disease and the ensuing social treatment is,
itself, evidence of the intact complex cognitive function that is required for a
person to be a ‘semiotic subject’ – one whose behaviour is driven by the
meaning that situations hold for him or her (Sabat and Harré 1994).
To summarize, negative positioning of people diagnosed with Alzheimer’s
disease is based on a medical view that every instance of seemingly ‘abnormal’
behaviour seen in the person diagnosed is due to brain damage, and that such
people are immune to being treated in dysfunctional ways by others. So, for
example, if a person with a diagnosis of probable Alzheimer’s disease is treated
in a way that would be humiliating and embarrassing to any reasonable,
healthy person, and if the person with Alzheimer’s disease reacts with anger or
grief or by pulling away from others or avoiding them completely, the anger,
grief, social isolation are viewed as symptoms of Alzheimer’s disease instead of
symptoms of dysfunctional social treatment, so as to validate the original
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Exercise 4.2 The importance of knowing the full context
Consider the following:
You are a staff member at a day centre that serves people including those
diagnosed with dementia. The spouse of one of the participants tells you
about his wife, ‘Her Alzheimer’s is getting worse; yesterday, after I picked her
up from the day centre, she became irrationally hostile toward me, wouldn’t
speak to me or look at me at all during the evening.
What do you say?
What do you think?
Consider what you might think if you also knew the larger context of the
scenario: When the husband arrived to pick up his wife, she was standing in
the hallway conversing with others, including staff members. The husband
joined in the conversation but, as his wife was talking, he began to tuck her
turtleneck top into her trousers (she was wearing it outside of her trousers
and it looked fine). As he did this in front of others, thinking (incorrectly) that
she’d forgotten to do so herself, she was clearly humiliated, her eyes bulging
out of their sockets, so to speak, but this went unnoticed by her husband.
She reacted toward him later with anger, but the anger was anything but
‘irrational’. Indeed, one could quite easily refer to her reaction as ‘righteous
indignation’ instead of ‘irrational hostility’.
The message in this case is clear: it is of tremendous importance to understand
the larger social context in which a person acts; and not to assume that because
a person with AD reacts in a way that is not immediately understandable to the
caregiver, the behaviour in question is ‘irrational’ and a product of brain
damage as opposed to dysfunctional social treatment.
People with AD live in a social world with others much of the time and it
is to the social domain that we now turn.
The social domain
Box 4.3 Case example
Mrs R attended an adult day centre and, according to standard assess-
ments, was in the moderate to severe stages of AD. Her husband com-
mented that she did nothing around the house, save for watching television
and walking around ‘aimlessly’, that she did not help with the household
chores, that he did everything. At the day centre, however, Mrs R helped set
tables prior to the lunch meal, acted almost as a volunteer (according to the
staff members) by helping participants in wheelchairs navigate through
doorways, by comforting others who were recovering from illness and by
calling staff’s attention to participants who needed a level of help that she
could not provide (Sabat 2001). Although it is true that brain damage can
result in increased variability in the performance of many tasks, there was
no variability in Mrs R’s behaviour: at home she did nothing, but at the day
centre, she did a great deal, much of which she could have done at home
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level to find an explanation for this striking difference in her behaviour. In the
past, Mrs R served as a volunteer in a variety of ways, from working in
hospitals to caring for abandoned children in undeveloped countries. Being
of service to others was an abiding aspect of her personality.
We can examine this as well as her situation at home and at the day centre by
using a social constructionist approach (Harré 1991) as a heuristic device.
Among the aspects of selfhood, there is the self of one’s attributes, mental and
physical, past and present. So, one’s eye pigmentation, facility with languages,
college degree, sense of humour, are all part of this aspect of selfhood (called
Self 2). Also part of Self 2 are one’s beliefs (political, religious, etc.) and one’s
beliefs about one’s attributes: one can take pride in some of one’s attributes,
while viewing other attributes with disdain, even antipathy. People with AD
even in the moderate to severe stages have made it clear that they view their
losses as embarrassing, frustrating, even maddening. Also part of the selfhood
of an individual is the multiple social personae (Self 3) that he or she construct
with the cooperation of others. Each of one’s social personae is marked by a
unique pattern of behaviour, so that the behaviour connected with being a
loving spouse is quite different from that connected with being a devoted
parent, a demanding supervisor at work, and a loyal friend, to name a few. We
can examine Mrs R’s situation at home as opposed to the day centre by
examining the social dynamics required for the construction of the social
personae of Self 3.
Recall that it is necessary to have the cooperation of at least one other
person in order to construct (jointly) a particular social persona.
Box 4.4 Case example
It would be impossible to behave as a loving spouse if one’s husband or wife
did not recognize him or her as being a spouse. One cannot construct the
persona of the devoted parent if one’s child does not recognize one as being
his or her mother or father. Mrs R could not construct the social persona of
‘helpful spouse’ at home because her husband did not allow her to engage
in helping him with household jobs. He indicated his concern that she would
fail to do what he would ask of her and so, according to him, he ‘protected’
her by doing everything himself. Conversely, at the day centre, the staff
cooperated with Mrs R, allowing her to be of help to participants as well as
to other staff members, thereby helping her in constructing the social
persona of ‘helpful participant/quasi volunteer’.
There have been reports of similar examples in recent years (Sabat 2003; Sabat
et al. 2004). In many cases, it appears, the person with Alzheimer’s disease is
prevented from constructing a valued social persona due to (a) the lack of
cooperation from healthy others in the social milieu, and the intimately related
(b) the tendency of others to view the person with Alzheimer’s disease
increasingly in terms of his or her deficits. By viewing the person in question
mainly in terms of his or her diagnosis and all the losses it entails, healthy
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question takes pride. This dynamic serves to restrict the social persona of the
individual with Alzheimer’s disease to something that the person with Alzheim-
er’s disease finds abhorrent, embarrassing, humiliating – ‘the burdensome
patient’ or ‘the defective patient’ because others do not provide the necessary
cooperation for the person to construct a worthy social persona. In this way,
the person with Alzheimer’s disease is confined to a social persona that is
constituted of everything that is defective and embarrassing. Is it any wonder
that Dr M, a retired university professor in the moderate to severe stage,
commented about Alzheimer’s, ‘Is it even more embarrassing than a sexual
disease?’ (Sabat 2001: 115).
Exercise 4.3 How a person can be positioned malignantly
by language
Consider the following:
You make a visit to the home of a married couple. The husband has been
diagnosed with dementia. You are greeted by the wife who then introduces
you to her husband by saying, ‘This is my husband; he’s the patient.
Do you have a private reaction to this introduction, and if so, what is it?
Here we see a perfectly loving, devoted, respectful wife introducing her
husband as ‘the patient’. Of course, her husband had many other attributes
that could have been used as part of an introduction, and it was clear that
some of those attributes were positive and worthy of honour and respect.
Yet, the wife focused on an attribute that he found abhorrent.
It is common to hear people described as ‘patients’. Still, the plain fact is that
people are patients only in relation to their physicians, nurses, dentists and
other health professionals. In other social relationships, people can be many
things, but they cannot be patients in the true sense of the social situations at
hand. Why, then, are people with AD seen as being ‘patients’ regardless of the
social situation of which they happen to be a part? In a sense, the restriction of
a person’s social persona to an attribute that the person loathes and is
embarrassed by is a form of what Kitwood (1998) called, ‘malignant social
psychology’ because this type of treatment depersonalizes the individual and
constitutes an assault on the person’s sense of self-worth.
It is clear that people with Alzheimer’s disease even in the moderate to
severe stage of the disease can construct worthy social personae when given the
necessary cooperation. It is clear also that those who live in residential settings
for people with dementia can still enjoy and experience meaningful social
interactions (Hubbard et al. 2003). It is extremely important to note, however,
that such people are far more dependent on there being supportive environ-
ments and venues within which they can have the opportunities to engage in
these kinds of interactions. Hence, people with Alzheimer’s disease or other
forms of dementia are far more vulnerable than they were during the balance of
their adult lives because it is much more difficult for them to gain the
cooperation they need in order to construct valued social identities. There is
reason to emphasize strongly, therefore, that the measurement tools that are - 01582 451331 -
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used to assess the so-called cognitive abilities of people with dementia,
obviously do not predict or assess a person’s capacity to enjoy meaningful
social interactions with others. In other words, practitioners (a) should not
assume anything at all about the social identity or potential social identity of a
person with dementia on the basis of his or her standard test scores because (b)
such tests make little, if any, contact with the combination of cognitive abilities
that is required for a person to be a semiotic subject who can enjoy valued
social relationships with others.
Box 4.5 Case example
A man to whom I was about to administer a battery of neuropsychological
tests made what seemed to be a completely unsolicited (by me) comment:
‘Doc, ya gotta find a way to give us purpose again.’ Although he was in the
moderate to severe stage of Alzheimer’s disease, he possessed the ability
(and the requisite functional brain systems) to discern the importance of
having a purpose in life, that he lacked a meaningful purpose, and that he
needed help from someone else in his quest to regain what he so strongly
desired. A Bio-Psycho-Social approach allows us to understand that:
1 some of the losses he sustained had their roots in biological terms, but
also simultaneously,
2 he was able to experience and articulate a completely appropriate
reaction to those losses,
3 he understood what those losses meant to him personally and socially
and finally,
4 there are non-pharmaceutical ways to enhance his quality of life.
Debates and controversies
Within the domain of a bio-psycho-social approach to dementia, professionals
in different disciplines still engage in debates around the issues:
+Does a purely biomedical approach to dementia provide a complete
understanding of the person diagnosed?
+Are pharmaceutical treatments (drugs) all that are required to treat the
+Is it practical to try to understand and treat each person in light of his or
her unique history when each person is different? Is this possible in
residential homes?
+What is the difference between understanding the disease a person has and
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The behavioural changes observed in people with dementia were, for decades,
attributed solely to brain damage. More recently, it has become clear that, in
addition to the effects of brain injury, people with dementia also have
psychological reactions to their brain injuries, and these reactions affect what
they say and do in relation to others. Furthermore, people with dementia are
affected by the ways in which they are treated by healthy others in social
situations. Although biological explanations are appropriate in explaining
certain aspects of Alzheimer’s disease, such as the relationship between damage
to the hippocampus and defects in explicit memory, there are other effects that
are not explainable in purely biological terms. Specifically, people with
dementia are embarrassed by, angry about, and sometimes depressed about the
problems caused by brain injury and they seek to avoid embarrassment and
humiliation. Furthermore, they can retain aspects of selfhood, including worthy
social personae, but the latter depends upon how they are treated by others. A
bio-psycho-social approach is required for understanding people with AD and
for the further evolution of good practice in the treatment and support of
people with other types of dementia.
Further information
MedlinePlus provides information on-line about health conditions, including
dementia. It brings together information from NLM, the National Institutes of
Health (NIH), and other US government agencies and health-related organiza-
The Merck Manual of Geriatrics is available online and provides information
about the care of older people.
The National Institute of Neurological Disorders and Stroke is part of the US
National Institutes of Health. It has web pages devoted to dementia.
The University of California at San Francisco Memory and Aging Center has a
web site with useful information about dementia.
Alzheimer’s and Related Disorders Association (ADRDA) (2000) A Race
Against Time. Chicago, IL: ADRDA.
Bender, M.P. and Cheston, R. (1997) Inhabitants of a lost kingdom: A model of
the subjective experiences of dementia. Ageing and Society, 17(5): 513–32.
Brown, J.W. (1972) Aphasia, Apraxia, and Agnosia: Clinical and Theoretical
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Gaines, A.D. and Whitehouse, P.J. (2006) Building a mystery: Alzheimer’s
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Grosse, D.A., Wilson, R.S., and Fox, J.H. (1990) Preserved word stem
completion priming of semantically encoded information in Alzheimer’s disease.
Psychology and Aging, 5(2): 304–6.
Harré, R. (1991) The discursive production of selves. Theory and Psychology,
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Harré, R. and van Langenhove, L. (1991) Varieties of positioning. Journal for
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Alzheimer’s disease. Ageing and Society, 10(2): 177–96.
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... The engagement of PwD in activities such as reading and playing computer games during the lockdown is documented in other studies (7,19). Due to stigma, embarrassment or awareness of being less able to engage in activities in normal times PwD may experience social anxiety and, as a consequence, withdraw from social activities (32)(33)(34)(35)(36), so in this sense restrictions may have had positive aspects. Nonetheless, further understanding of the mechanisms through which pandemic experiences decreased the likelihood of mood problems in PwD could help to identify ways of promoting better mood in PwD post-pandemic. ...
Full-text available
Objective Research suggests a decline in the mental health and wellbeing of people with dementia (PwD) during the COVID-19 pandemic; however few studies have compared data collected pre-pandemic and during the pandemic. Moreover, none have compared this change with what would be expected due to dementia progression. We explored whether PwD experienced changes in mental health and wellbeing by comparing pre-pandemic and pandemic data, and drew comparisons with another group of PwD questioned on two occasions prior to the pandemic. Methods Community-dwelling PwD enrolled in the IDEAL programme were split into two groups matched for age group, sex, dementia diagnosis, and time since diagnosis. Although each group was assessed twice, one was assessed prior to and during the pandemic (pandemic group; n = 115) whereas the other was assessed prior to the pandemic (pre-pandemic group; n = 230). PwD completed measures of mood, sense of self, wellbeing, optimism, quality of life, and life satisfaction. Results Compared to the pre-pandemic group, the pandemic group were less likely to report mood problems, or be pessimistic, but more likely to become dissatisfied with their lives. There were no changes in continuity in sense of self, wellbeing, and quality of life. Discussion Results suggest the pandemic had little effect on the mental health and wellbeing of PwD, with any changes observed likely to be consistent with expected rates of decline due to dementia. Although personal accounts attest to the challenges experienced, PwD appear to have been resilient to the impact of lockdown and social restrictions during the pandemic.
... Since my positioning influences the direction of these findings, both through my relationship with participants and approach to analysis (Finlay, 2002), it is important to clearly outline my stance. I regard dementia as a complex bio-psycho-social condition (Sabat, 2014), and as a disability more than a disease, in which a range of relational, social, political, environmental and economic variables can (dis)empower people who have dementia (Shakespeare et al., 2019). This stance underpins both the project and this paper. ...
Full-text available
Metaphors help shape the social world. Yet, with research and language guidelines focusing primarily on the stigmatising potential of verbal representations, much greater attention is needed regarding visual metaphors’ role in perpetuating and challenging particular views of dementia. Through semi-structured interviews and focus groups, this paper explores how people with dementia and their carers and/or loved ones evaluate one prevalent visual metaphor for dementia that maps autumnal trees losing leaves onto the brain/head. Analysis considers three main responses to the metaphor, that: (1) it does not depict dementia; (2) it meaningfully explains a biomedical account of progressive brain deterioration; and (3) it reinforces inaccurate and/or ‘hopeless’ discourses of what having dementia involves, with individuals suggesting creative alterations to better fit their counter discourses. These findings foreground the importance of attending to subjectivity, nuance and multi-layered discourses within visual metaphors, which can indirectly convey stigmatising representations.
... Such a view should recognize the dignity and humanity of people with dementia despite their cognitive deficits. Information should be provided to counteract the stereotypical depictions, for example, showing that people with dementia do not lose their selfhood, have feelings and emotions and can be deeply affected by others' treatment of them (Kitwood, 1990;Kontos, 2004;Sabat, 2008). Integrating the psycho-social perspective as well as presenting the experiences and views of people with dementia would be a step towards the dissemination of more balanced representations of dementia and Alzheimer's disease in the media; would challenge dominant representations about dementia and would lay the foundations for successful public interventions. ...
Objectives The aim of the present study is to test the network analysis method on a corpus of media texts with the aim of systematically analysing media representations of dementia in the Slovak media. Methods A word-network was modelled from the corpus of media documents using social network analysis. 244 text-documents (web, print, TV and radio) from 2015 to 2018 (inclusive) were retrieved from the Newton media database using the search words ‘dementia’ and ‘Alzheimer’s disease’. Results Twelve clusters of co-occurring concepts corresponding to individual themes were identified. The results of the analysis provide evidence that biomedical themes such as ‘medical diagnosis’, ‘prevalence of dementia’ and ‘memory disorders’ possess the greatest representational strength and centrality and account for roughly two-thirds of the whole corpus. Conclusion Results of the present study provide valuable insights into the representation of dementia in the Slovak media but also demonstrate how media representations can be studied using the innovative approach of network analysis.
... In the recent global action plan on the public health response to dementia 2017-2025, the World Health Organization (WHO, 2017: 2) describes dementia as 'an umbrella term for several diseases that are mostly progressive, affecting memory, other cognitive abilities and behavior, and that interfere significantly with a person's ability to maintain the activities of daily living', configuring it as a public health priority. For many years, dementia care has been dominated by the standard medical approach (Katzman et al., 1978), in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications (Bond, 1999;Sabat, 2008). The pervasive use of medications has often been accompanied by so-called malignant social psychology, a phrase coined by Kitwood (1990) for a style of interaction enacted by care-givers, which had the effect of depersonalising the treatment administered to persons with dementia. ...
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For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural and physiological symptoms related to dementia, proposing personalised interventions aimed at supporting patients and their relatives from diagnosis until death. With particular reference to long-term settings, in this work, we aim at understanding the organisational implications of three types of interventions (labelled supportive care interventions – SCIs) that have characterised this shift in dementia care: person-centred, palliative and multi-disciplinary care. Conducted by following the integrative review method, our review underlines how SCIs have controversial consequences on the quality of care, the care-givers’ quality of life and cultural backgrounds. After an in-depth analysis of selected papers, we offer some considerations about the implications of SCIs for long-term care organisations and future research directions.
... Artefacts can play a role in triggering conversation create space for dialogue (Wallace et al. 2013) and can be catalysts of choice, despite the difficulties in communicating verbally, understanding and remembering. The ability to recognise rather than remember is key and so multiple-choice formats are often less compromising and easier for people with dementia (Sabat 2014). Artefacts can be designed to provide several options and possibilities, allowing people to choose and can include elements that can be moved around, offer different aesthetic possibilities such as colour, or provide different possibilities for use. ...
As a result of the work by Tom Kitwood, one of the main aims of dementia care is the maintenance of personhood; therefore, this article reflects on how design can contribute to this purpose. Kitwood identified ten different interactions toward people with dementia that can enhance well-being and contribute to the preservation of personhood, which he called Positive Person Work. Each interaction is explored from a design perspective: speculating on how we might design for the experience of specific interactions, taking into account different roles that artefacts can have in mediating them, and how they can be used as considerations for involving people with dementia as participants in a codesign process. These Positive Person Work interactions also served as evaluation themes for participants to comment on the experience of using the designed outputs of this research, adding a user perspective. The ideas we share in this article do not intend to be prescriptive or to propose one way of designing for and with people with dementia. Instead, they aim to look at Kitwood’s framework from a design perspective, informing and inspiring design researchers and practitioners who work with people with dementia.
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Background: Changes that occur for a person as a consequence of dementia can be experienced as losses, both by people with the condition and those who care for them. People in these caring relationships can also discover different ways of being, and relating to each other as individuals, relationships and circumstances change. This opens up future possibilities for growth and development. Music and dementia research has been conducted predominantly within and, therefore, focused on issues of relevance within, institutional settings rather than peoples’ own homes. Studies conducted within the home setting suggest that musical activity can be supportive of people with dementia and those that care for them; support that is greatly needed. In this study, I sought to understand musical activity in the home setting and caring relationships of people with dementia and how it can be promoted and supported, whereas the majority of previous studies have sought to establish the impact of musical interventions. Method: I engaged in a process of ‘gentle empiricism’; a method for the study of living processes that is attributed to Goethe. Gentle empiricism takes individual experience as a basis for coming to understanding and is a new approach to music and dementia research. My experience was the primary form of data for the study that was supplemented by documentation, video footage and other forms of media as ‘secondary data’. To gain experience, I participated in musical activity within the homes of four people with dementia, each with a family member, during fieldwork sessions. Understanding: This study offers a ‘dynamic’ perspective of personhood as human activity, dementia as disruption to this activity, and music as a medium offering coherence. The findings • evidence the accessibility of shared musical experiencing and creating in the daily lives and caring relationships of people with dementia living at home; • demonstrate a relevance for musical activity beyond health and well-being outcomes; iv • and elucidate conditions, qualities and practical suggestions for promoting and supporting opportunities for musical activity in peoples’ own homes. Potential: The understanding from this study holds potential to contribute to the development of person-centred dementia care practice and music facilitation in the home setting. It also holds potential to promote and support the growth and flourishing of individuals with dementia living at home and those who care for them, their relationships and their musical activity. Gentle empiricism emerged as a pertinent approach for future music and dementia research and practice.
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Background The Neuropsychiatric Inventory (NPI) is predicated on the assumption that psychiatric symptoms are manifestations of disease. Biopsychosocial theories suggest behavioural changes viewed as psychiatric may also arise as a result of external behavioural triggers. Knowing the causes of psychiatric symptoms is important since the treatment and management of symptoms relies on this understanding. Aims This study sought to understand the causes of psychiatric symptoms recorded in care home settings by investigating qualitatively described symptoms in Neuropsychiatric Inventory-Nursing Home (NPI-NH) interviews. Method The current study examined the NPI-NH interviews of 725 participants across 50 care homes. The qualitatively described symptoms from each of the 12 subscales of the NPI were extracted: 347 interviews included at least one qualitatively described symptom ( n = 651 descriptions). A biopsychosocial algorithm developed following a process of independent researcher coding ( n = 3) was applied to the symptom descriptions. This determined whether the description had predominantly psychiatric features, or features that were cognitive or attributable to other causes (i.e. issues with orientation and memory; expressions of need; poor care and communication; or understandable reactions) Results Our findings suggest that the majority (over 80%) of descriptions described symptoms with features that could be attributable to cognitive changes and external triggers (such as poor care and communication). Conclusions The finding suggest that in its current form the NPI-NH may over attribute the incidence of psychiatric symptoms in care homes by overlooking triggers for behavioural changes. Measures of psychiatric symptoms should determine the causes of behavioural changes in order to guide treatments more effectively.
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Studies of elementary cognitive functions in people with Alzheimer's Disease (AD) do not reveal a variety of intact remaining abilities. Elucidating the subjective experience of such persons is fundamentally important in (1) having a more informed understanding of the effects of AD on persons, and (2) finding ways to enhance their quality of life regardless of where they live. Advantages of engaging people with AD as research collaborators include (1) what we can learn about psychosocial aspects of their subjective experience, and (2) how, by supporting aspects of their selfhood, we can enhance the quality of their lives. For more than three decades, researchers have studied the effects of Alzheimer's Disease (AD) on elementary cognitive functions such as aspects of memory, attention, information-processing, restricted aspects of language use, sensory and motor function and the like by employing "traditional" investigative strategies. Thus, we have come to understand AD in terms of its effects on cognitive functions that are usually, according to experimental designs and neuropsychological tests, studied independently of one another. Researchers often use "group" data wherein the average scores for people with AD are compared, statistically, with those of a normal control group. Often, there are statistically significant differences between the group averages, the AD group average being worse than that of the normal group. Thus, we find that in the areas of word-finding ability (Appell, Kertesz, and Fisman, 1982), other aspects of language function (Hutchinson and Jensen, 1980; Bayles, 1982; Martin and Fedio, 1983; Hier, et. al., 1985) explicit episodic memory (Heindel, et. al.,1989), confrontation naming, learning to recognize new faces, maintaining vigilant attention (Freed, et. al., 1989), processing of emotional cues (Allender and Kaszniak, 1989) and the like, people with AD are "deficient" relative to normal, age-matched normal "control" subjects.
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The discourse of Alzheimer's disease sufferers, studied in depth, is found to reveal the afflicted as being semiotic subjects, that is, persons for whom meaning is the driving force behind their behavior. This is despite the fact that the subjects are categorized, on the basis of standard psychometric measures, as being in moderate to severe stages of the disease. The research presented herein is meant to suggest the possibility that such disparities may be more common than is presently acknowledged, and that if so, such semiotic behavior as can be found in Alzheimer's sufferers may be used to help facilitate interactions between the afflicted and the healthy, and to inform further our understanding of cognition and intention by suggesting a complementary approach to assessing cognitive function. In keeping with the discursive approach to psychology, this study is based on the principle that meanings are jointly constituted by the participants to a conversation.
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Current concepts of dementia often act to exclude the internal world of the dementia sufferer from consideration as a valid object of study. This paper presents a three stage model of the subjective world of dementia sufferers, drawing on ideas from both clinical and social psychology. The first stage involves the feelings engendered by the process of dementia and includes at least four discrete states: anxiety; depression; grief; and despair/terror. The second stage of the model concerns the behaviour provoked in response to the process of decline. Finally, we consider the social nature of emotional behaviour, with emotional actions falling along a continuum. The ability of an individual with dementia to engage in emotional behaviour depends upon the extent of their cognitive impairment and the social context in which they are located. This model has implications for the delivery of services, including psychotherapy, to people with dementia.
This chapter argues that communication should be central to how we think about dementia and how we work with those who live with it. As for the emerging concept of 'supportive care' for people with dementia, it offers some thoughts about this idea generally, and about where communication should fit in. It explores three main ideas about what this thing called supportive care might look like, and where communication fits in. These ideas are illustrated with examples, quotations, and stories.
Abstract The topic of multiple forms of memory is considered from a biological point of view. Fact-and-event (declarative, explicit) memory is contrasted with a collection of non conscious (non-declarative, implicit) memory abilities including skills and habits, priming, and simple conditioning. Recent evidence is reviewed indicating that declarative and non declarative forms of memory have different operating characteristics and depend on separate brain systems. A brain-systems framework for understanding memory phenomena is developed in light of lesion studies involving rats, monkeys, and humans, as well as recent studies with normal humans using the divided visual field technique, event-related potentials, and positron emission tomography (PET).
The concept of `Self' has been the focus of much recent work in theoretical psychology. Difficulties have been at least partly due to the polysemous character of the concept itself. In this paper an attempt is made to clear the ground for more sharply focused psychological studies of personhood by distinguishing Self-1, roughly the philosophers' concept of personal identity, from Self-2, the Self that Goffman referred to in his studies of Self-presentation. The argument turns on the assumption that both concepts of Self are indispensable both for understanding person-hood and for living as persons. Problems and misunderstandings stem from the use of inappropriate grammatical models for understanding person talk. Setting up more adequate models allows one to propose a social constructionist account of both presented Selves and of the sense of subjective singularity.
In this paper, we suggest some of the dimensions of the problematic concept of Alzheimer Disease (AD) as a natural disease discerned by increasingly sophisticated medical scientific progress. Taking a page from Max Weber concerning unique events, we show some of the conceptual building blocks and social processes that have coalesced into the perception of certain phenomena as abnormalities that are seen as implicated in the development of a degenerative disease distinct from the process of normal, but variable, brain aging. We note some of the decisions and social forces pushing for particular conceptualizations, interpretations, and reifications of brain alterations. In so doing, we do not argue that there is no "there" there. Rather, we suggest that the mystery of the "there" (i.e., AD, mild cognitive impairment) may not be much different (if at all) from, and probably is, the mystery of the "everywhere" (i.e., aging).
A new theory of the dementing process in old age is presented in outline. Its main focus is on the dialectical interplay between neurological and social-psychological factors, with special emphasis on aspects of the latter which deprive a neurologically impaired individual of his or her personhood. The account of dementia so derived is more comprehensive and less deterministic than those which are based on the simpler versions of a ‘medical model’. Also, it opens up the way for a more personal and optimistic view of caregiving.