The number of people affected by dementia does not end with the patients.

Curren
t research is increasingly showing that these numbers are severe underestimates,
as dementia affects almost all people a patient interacts with (Gilliard, 2001)
. In fact, the sheer amount of literature on caregiver well-being aptly demonstr
ates the profound psychological effects on the caregiver as well. The psychologi
cal effects on both patients and caregivers appear to be causal and heavily over
lap, that is to say, the psychological effects on the patient tend also to have
corresponding psychological effects on the caregiver and vice versa. Therefore,
I propose that in order to extend our understanding of dementia, we should work
towards a more integrated focus, exploring the links between the effects on the
patient and the carer. This essay will discuss the psychological effects of deme
ntia on the patient and the caregiver and the impact of these effects on one ano
ther, using Alzheimer's disease (AD) as my primary example. A decrease in shortterm memory and psychomotor skills is a common facet of normal ageing. Problems
however tend to arise when there is a dramatic loss in cognitive function which
interferes with a persons everyday life and it is this that constitutes as demen
tia (Seligman, 2001). The psychological effects of dementia vary from person to
person, however Riesberg's stage model (1983, as cited in Stokes and Holden, 199
0) is generally accepted and describes its broad characteristics. <list><list><h
eading>The 'forgetfulness stage': Short-term memory loss the most prominent feat
ure.</heading> Fatigue and poor concentration. Prefer established routines.</lis
t><list><heading>The 'confusional stage': Increasingly poor attention span and i
ntellectual performance.</heading> Disorientation and speech errors. Rationalis
ations and confabulations.</list><list><heading>The 'dementia stage': Difficulti
es in the basic activities of daily living.</heading> Behaviour lacks purpose. C
an result in an almost vegetative state.</list></list>Adapted from Stokes & Hold
en (1990). The progression of AD begins with an initial amnesic stage, which con
tinues on into attentional deficits followed by impairments in language and then
visuospatial functions (Hodges and Patterson, 1995), each of these cognitive ef
fects are discussed below. The most common psychological effect on the patient i
s deterioration in memory, with each subtype differentially impaired. In dementi
a, memory impairment is manifested in difficulties with learning new information
and/or recalling previously learned information and in the case of AD, tends to
deteriorate as the disease progresses. AD patients have difficulty in adding ne
w information to their LTM and any new information that is stored is generally l
ost rapidly. Consequently, episodic memory is also impaired (Morris & McKieran,
1994, as cited in Maciejewski, 2001), as AD affects the medial temporal structur
es, including the hippocampus, which is crucial in encoding new memories (Squire
s, 1992, as cited in Perry & Hodges, 1999). In addition, episodic memory impairm
ent appears to underlie the temporal and spatial disorientation experienced by m
any dementia patients and hence is almost always tested in cases of dementia (Mo
rris, 1999). Prospective memory loss (i.e. remembering to do something in the fu
ture) can also be seen early in dementia (Craik, 1986, as cited in Maylor et al.
, 2002). An inability to remember to do things at the right time, not only resul
ts in a range of potentially serious and disruptive consequences for the patient
, but can also cause frustration and stress in the caregiver (Smithal. 2000). Ev
en though, a study into AD patients has shown that retrospective memory tasks ar
e more impaired than prospective memory tasks (Maylor et al, 2002), a patient's
prospective memory failures are found to be more frustrating to caregivers (alth
ough no more prevalent) than are their retrospective memory failures (Smithal. 2
000). Due to this greater impact on the lives of the caregivers, prospective mem
ory failures are alsomore likely to be reported as early indicants of the diseas
e. It has been proposed that 'pure' memory impairment may not actually be the ca
use of unregistered new information and may in fact a result of difficulties in
attention and concentration (Maciejewski, 2001), which are also extremely promin
ent in dementia. Attentional dysfunction in cases of dementia however, does not
mean a loss of alertness. In fact, research has shown that attentional impairmen
t in dementia only occurs when more than one stimulus or mental activity is bein
g manipulated and sequenced during cognitive activity (Morris, 1999). Although A
D patients have been found to perform perfectly well on vigilance tasks (Lines e

t al, 1991, as cited in Morris, 1999), there are other areas of attentional dysf
unction. Extremely significant impairments of visual attentional shift were foun
d by Parasuramanal. (1992). This experiment manipulated the idea that if a visua
l arrow points towards an area in which a letter will subsequently be displayed,
a persons response times when identifying the letter is facilitated and hence q
uicker. Consequently, if the arrow points away from the area, the response time
is inhibited. It was found that AD patients had a normal facilitation effect but
presented a much larger inhibitory effect with 'away arrows' as they were less
able to disengage their attention from the incorrect area and redirect it. This
is supported by similar findings reported by Okenal. (1994, as cited in Hodges &
Paterson, 1995) and also evidence showing that shifting attention is controlled
by the posterior parietal regions of the brain (La Berge, 1990, as cited in Mor
ris, 1999), as those who show an attentional shift deficit also show reduced met
abolism in this area (Parasuraman et al., 1992). In addition, dichotic listening
tasks conducted on AD patients also show difficulty in switching attention (Gra
dy at al., 1989, as cited in Morris, 1999). It is important to bear in mind that
although the tasks used in these studies require attentional capacities, they o
ften rely heavily on working memory and even low-level visuospatial abilities, h
ence dementia may be a product of these areas and not an attentional deficit. At
tentional deficits have detrimental effects upon the daily living of not just th
e patient but also upon the caregiver. In terms of the patient, these deficits c
ause an inability to concentrate, and results in patients being easily distracte
d and perplexed by tasks that were previously easily performed (Perry and Hodges
, 1999). Their interaction with the environment is subsequently severely hindere
d, as attention interacts with many aspects of sensory input, perception and cog
nition, which consequently can result in an insufficient interpretation of the e
nvironment. Being able to shift attention is extremely important in day-to-day s
ocial interactions. An inability to fixate individual faces in a crowd or to tun
e into a particular conversation would not only be frustrating but would also in
duce a feeling of loneliness and even isolation. It is possible that this could
be a factor leading to the high rates of depression associated with dementia, as
those who live alone are also significantly more prone to depression (Cohen et
al., 1993). Loneliness and depression may also cause the patient to become dista
nt thus causing difficulties for the caregiver, especially if their relationship
was once close. Subtle changes in language and semantics, including word-findin
g difficulties, naming deficits and impaired comprehension, are present in early
stages of AD, whereas receptive problems are more likely later on in life (Maci
ejewski, 2001). Language in AD patients has been described as only really lackin
g comprehension and content (Goodglass and Kaplan, 1983 as cited in Morris, 1999
), demonstrated by a gross impairment in learning abstract simple concepts and i
n tests of verbal fluency (Morris, 1999) and resulting also in the reduction of
semantic memory. It has also been found that AD patients are more unlikely to co
mprehend the meaning of words relating to particular objects if they have diffic
ulty in naming them (Morris, 1999), once more suggesting a semantic memory impai
rment, rather than merely retrieval difficulties. The implications of a loss of
semantic memory reach further than just the loss of a meaning of words; it also
more importantly affects the patients's social interactions and the rules that g
overn them. For example, an AD patient will have difficulty in describing the mo
st crucial aspects of a series of events in an everyday situation; hence, it may
be particularly difficult for the caregiver to interact with the patient. Non-c
ognitive features of dementia are believed to contribute more to caregiver strai
n than any of the aforementioned cognitive deficits (Donaldson, Tarner & Burns,
1998, as cited in Woods, 1999). These features include, depression, anxiety, hal
lucinations, delusions and challenging behaviour. In a comprehensive study of AD
patients, Burns et al (1990, as cited in Woods, 1999) illustrated a number of c
ases of hallucinations and delusions. 30% of patients had manifestation syndrome
s (e.g. mistaking mirror images for real people) and 10% showed visual and audit
ory hallucinations, which increased to 80% in cases of Lewy body dementia. 24% o
f elderly patients with dementia also suffer from depression (Lyketsos et al, 20
01). Despite suggestions that depression actually contributes to the cognitive d

eficits (Benedict, Dobraski & Goldstein, 1999), patients with the most symptoms
of depression are also those who are the most accurate when it comes to describi
ng their cognitive and physical limitations, hence suggesting that depression is
in fact a consequence of their symptoms (Seltzer, Vasterling and Buswell, 1995,
as cited in Seligman et al., 2001). These non-cognitive features have profound
effects on the caregiver, for example challenging behaviours are found to be imp
ortant contributors to caregiver depression, with the impact of these behaviours
increasing over time (Schultz and Williamson, 1991). The psychological effect o
n caregivers is believed to be greater with dementia patients than for patients
of any other illness (Levesque, Ducharme & Lachance, 1999), which I believe this
is primarily due to the stress caused by the nature of dementia. In particular,
the patient is rarely able to give adequate feedback and although the patient w
ill require constant care and attention, they may not even recognise their careg
iver. Understandably, this could be extremely stressful for the caregiver, parti
cularly if the patient were a spouse or a parent, as the situation would be deep
ly upsetting and could be the cause of major psychological effects. In fact, car
ing for a dementia patient results in a higher risk of depression, suicide and o
ther health related problems (Morrissey et al, 1990). Both the emotional and phy
sical strain placed upon the caregiver and the patient is not helped by the fact
that many caregivers are reluctant to ask for help, possibly due to feeling gui
lty about being an inadequate caregiver (Goudie, 1990). Due to the immense press
ure the caregiver is under, elder abuse is not uncommon; in fact physical abuse
by trusted caregivers is among the most common type of violent offense experienc
ed by older adults (Payne, 2002). Poor premorbid relationships in particular, ha
ve been found to be a key factor in predicting abuse and challenging behaviors a
re also heavily correlated with abuse (Compton et al, 1997). The psychological s
train placed upon the carer could not only lead to violence but also to neglect
(Pritchard, 1995). However, neglect may purely be down to an unawareness of appr
opriate ways to provide care (Johnson, 1995, as cited in Payne, 2002), hence hig
hlighting the need for training for caregivers. For example, anger is very commo
n in caregivers, hence it is imperative to identify and treat these negative tho
ughts in order prevent harm to the patient. Devries and Gallagher-Thompson (1993
, as cited in Maciejewski, 2001) proposed a group treatment using a cognitive ap
proach that challenges and replaces the negative thoughts with more adaptive cog
nitions accompanied by relaxation and assertion training strategies. The wear an
d tear model of care giving proposes that caregiver's physical and psychological
stamina are depleted over time (Townsend et al, 1989 as cited in Schultz and Wi
lliamson, 1991). In terms of the depression experienced by the caregiver, challe
nging behaviour exhibited by the patient and the lack of perceived social suppor
t were the most likely causes (Schultz and Williamson, 1991). However, it should
be noted that not all blame should be placed on the patient regarding the psych
ological effects on the caregiver. The social role of the caregiver is also a ke
y determinant of the level of adverse effects (Morrissey et al, 1990). It was fo
und that large numbers of friends and relatives alleviated homemakers' depressio
n, but made depression worse for paid workers. Morrisseyal. (1990) proposed that
work colleagues might have inadvertently added stress by offering social intera
ction but not practical help. Gender may also be important in whether caregivers
seek out help and support. Men tend to see caring as an occupational role (Fish
er, 1994), presumably as this re-establishes their role as a provider. This view
is beneficial as it suggests that men would be more willing to ask for help or
'time-off' in the same way they would at work. However, women are more likely to
adopt a carer role as they are socialised to care (Fisher, 1994). This would he
lp women in the transition into the role of caregiver, though it may also mean t
hey are more reluctant to ask for help, believing they should be able to cope al
one. In fact, Schultz and Williamson (1991) found that male caregivers got more
depressed as time went on, consistent with the wear and tear hypothesises, where
as depression in females tended to remain at a constant level, presumably becaus
e the are less likely to admit to an increase in depression as this would once a
gain suggest they are unable to cope. However, it is important to bear in mind t
hat in this study prior levels of depression were unknown in the sample, hence w

e cannot reliably conclude that depression was attributable to care giving. The
actual relationship between the caregiver and the patient can also impose psycho
logical effects on both parties. Tension often arises when there is a discrepanc
y between what the patient feels they need and what the caregiver wants (e.g. if
they need a break). The nature of this can have a big effect on the caregiver's
ability to cope, for example a close and intimate relationship can induce feeli
ngs of depression in the caregiver as well as an inability to communicate (Morri
s et al, 1988). This is further supported by the fact that if the relationship i
s close then the strain placed upon the caregiver is greater (Goudie, 1990) It i
s important to bear on mind that what has been presented here is by no means a d
efinitive list of the psychological effects present and is essentially a discuss
ion of some of the most common aspects of dementia. In reviewing the literature,
it appears that in the same way that the patient's illness develops and worsens
with time, the same is paralleled in the caregiver's experience of the disease.
In fact, there is often evidence for the characteristics of the patient being m
irrored by the caregiver (Gilliard, 2001). Despite the alternative causes for th
e effects on caregivers offered in this essay (e.g. social role and gender), res
earch has found that there are no significant differences in coping strategies b
etween caregivers of dementia patients and of other illnesses (LeVesque, Ducharm
e and Lachance, 1999). Therefore it must be the nature of dementia, more specifi
cally, its effects on the patient, that causes the increase in stress experience
d by caregivers. However, there is very little current research on how these psy
chological effects on the patient directly effect the caregiver's well being. Th
is is particularly important as not only do the effects on the patient have prof
ound effects on the caregiver but as we have seen, these negative effects can al
so promote the caregiver to harm the patient, hence creating a vicious cycle. Th
erefore, we need further research to focus on how the psychological effects of d
ementia on the patient affect the caregiver's mental health, resulting in an int
egrative approach that would help improve the welfare of both the patient and th
e caregiver.