Anda di halaman 1dari 18

This article was downloaded by: [University of Connecticut]

On: 11 October 2014, At: 00:08


Publisher: Routledge
Informa Ltd Registered in England and Wales Registered Number: 1072954
Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,
UK

Neuropsychological
Rehabilitation: An International
Journal
Publication details, including instructions for authors
and subscription information:
http://www.tandfonline.com/loi/pnrh20

Measuring awareness
in people with mild to
moderate Alzheimer's disease:
Development of the Memory
Awareness Rating Scaleadjusted
a

Rachel M. Hardy , Jan R. Oyebode Senior Lecturer


& Linda Clare
a

a b

School of Psychology , University of Birmingham , UK

School of Psychology , University of Wales , Bangor,


UK
Published online: 17 Feb 2007.

To cite this article: Rachel M. Hardy , Jan R. Oyebode Senior Lecturer & Linda
Clare (2006) Measuring awareness in people with mild to moderate Alzheimer's
disease: Development of the Memory Awareness Rating Scaleadjusted,
Neuropsychological Rehabilitation: An International Journal, 16:2, 178-193, DOI:
10.1080/09602010500145646
To link to this article: http://dx.doi.org/10.1080/09602010500145646

PLEASE SCROLL DOWN FOR ARTICLE


Taylor & Francis makes every effort to ensure the accuracy of all the
information (the Content) contained in the publications on our platform.
However, Taylor & Francis, our agents, and our licensors make no
representations or warranties whatsoever as to the accuracy, completeness, or
suitability for any purpose of the Content. Any opinions and views expressed
in this publication are the opinions and views of the authors, and are not the

views of or endorsed by Taylor & Francis. The accuracy of the Content should
not be relied upon and should be independently verified with primary sources
of information. Taylor and Francis shall not be liable for any losses, actions,
claims, proceedings, demands, costs, expenses, damages, and other liabilities
whatsoever or howsoever caused arising directly or indirectly in connection
with, in relation to or arising out of the use of the Content.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

This article may be used for research, teaching, and private study purposes.
Any substantial or systematic reproduction, redistribution, reselling, loan, sublicensing, systematic supply, or distribution in any form to anyone is expressly
forbidden. Terms & Conditions of access and use can be found at http://
www.tandfonline.com/page/terms-and-conditions

NEUROPSYCHOLOGICAL REHABILITATION
2006, 16 (2), 178 193

Measuring awareness in people with mild to moderate


Alzheimers disease: Development of the Memory
Awareness Rating Scale Adjusted

Downloaded by [University of Connecticut] at 00:08 11 October 2014

Rachel M. Hardy1, Jan R. Oyebode1,2, and Linda Clare2


1

School of Psychology, University of Birmingham, UK


School of Psychology, University of Wales, Bangor, UK

Variations in level of awareness among people with Alzheimers disease (AD)


may impact on well-being for the person with dementia and their carer, and may
influence outcomes of cognitive rehabilitation interventions. Awareness has
often been assessed using discrepancies between self and proxy rating or
between self-rating and objective task performance, with the latter considered
to be preferable. Measures are available that are suitable for people with mild
AD, for example the Memory Awareness Rating Scale (MARS). However,
these may be less appropriate for people whose impairments are more advanced
and who consequently have more difficulty with the objective task component.
In order to provide a measure suitable for people with moderate AD, an adjusted
Memory Awareness Rating Scale (MARSA) was developed by altering the
objective task component of the MARS. The MARSA was piloted with 41 participants with mild to moderate AD. It was found to be suitable for use with a
broader group of participants than the MARS. The component ratings were
found to have good internal consistency. The component ratings and the two
indices of awareness had high test-retest reliability. The extension of the original
measure offers the opportunity to consider awareness throughout the course of
the disease and provides a basis for longitudinal investigations of awareness.

Poor awareness of functional ability is something that has been well documented in people with early-stage (mild to moderate) Alzheimers disease
(AD) (e.g., Clare, 2003; Green, Goldstein, Sirockman, & Green, 1993;
Correspondence should be sent to Jan Oyebode, Senior Lecturer, School of Psychology,
University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.
Email: j.r.oyebode@bham.ac.uk
# 2006 Psychology Press Ltd
http://www.psypress.com/neurorehab
DOI:10.1080/09602010500145646

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

179

Koltai, Welsh-Bohmer, & Schmechel, 2001; Smith et al., 2000). Understanding variations in the level of awareness is important for a number of reasons.
For example, level of awareness has implications for the level of burden felt
by the carer (Seltzer, Vasterling, Yoder, & Thompson, 1997) and for the
outcome of rehabilitation (Clare et al., 2004; Koltai et al., 2001). Explanations
for impairments in awareness have ranged from viewing it as a neurologicallybased disorder and the result of specific changes in cognitive functioning (e.g.,
Agnew & Morris, 1998) to a more psychological perspective that regards poor
awareness as a form of denial (Weinstein, Friedland, & Wagner, 1994). The
evidence for a relationship between awareness and disease severity seems to
be inconclusive, with some studies finding a relationship between level of
awareness and severity of cognitive impairment (e.g., McDaniel et al., 1995;
Migliorelli et al., 1995) and others finding no relationship (e.g., Dalla Barba,
Parlato, Iavarone, & Boller, 1995; Michon et al., 1994). Indeed, the evidence
regarding the range of possible correlates and predictors of awareness remains
limited and it has been suggested that a range of factors may contribute to unawareness. The research evidence and complex issues involved in understanding anosognosia in AD are well reviewed by Agnew and Morris (1998) and
Clare (2004b) to whom the reader is referred for a more detailed overview.
Clare (2004a) proposes a tentative model of awareness which emphasises a
combination of biological, psychological and social contributions. Models
such as these provide a useful basis for empirical investigation. At present
however, no definite conclusions can be drawn regarding the basis of poor
awareness of functioning in AD and further investigation is needed. This
necessarily relies on the development of satisfactory ways of assessing awareness (Clare, 2004b; Clare, Markova, Verhey, & Kenny, in press).
A literature search suggests that three main methods have been used for
assessment of awareness of a range of abilities in people with AD, including
activities of daily living (Seltzer et al., 1997), overall cognitive functioning
(Migliorelli et al., 1995), and memory functioning (Dalla Barba et al.,
1995). The main techniques used are:
1. Clinician ratings: These involve a clinician or other qualified person
either asking the patient specific questions about his/her memory
and/or other aspects of cognitive functioning and daily living or
making a clinical judgement based on contact with the person.
2. Participant/informant discrepancy scores: Both the participant and the
carer, next of kin or other appropriate informant complete a similar
questionnaire where they make judgements (usually a numerical
rating) of the participants ability to perform in particular situations.
The difference between the two scores is calculated.

180

HARDY, OYEBODE, CLARE

Downloaded by [University of Connecticut] at 00:08 11 October 2014

3. Objective test/self-rating discrepancy scores: Participants are asked


to perform particular tasks and are also required to give a judgement
of their perceived ability either before or after their performance.
A score is then obtained by taking the difference between their actual
performance and their self-rating of their ability.
The presence and severity of unawareness has been found to vary according
to the type of assessment method used (Derouesne et al., 1999). Some of the
discrepancies between different indices may be because they tap different
facets of awareness (see Agnew & Morris, 1998 and Derouesne et al., 1999
for a more detailed discussion).
Global clinician ratings, if conducted thoroughly, have the potential benefit
of investigating awareness in depth. A semi-structured interview would,
hypothetically, give the participant the opportunity to express him- or
herself without being constrained to a rigid questionnaire. Further, the clinical
rating is carried out by a professional who, in theory, will have experienced
knowledge of people with AD. The information provided in the interview
should then be used to make as accurate a judgement as possible.
However, the majority of interviews conducted tend to be hindered by time
constraints. Thus, they are limited to a few basic questions (e.g., is your
memory worse than it used to be?) and the person is observed in one situation
only. A decision is then made based on the brief contact the interviewer has
with the patient (e.g., Loebel, Dager, Berg, & Hyde, 1990; McDaniel et al.,
1995; Sevush & Leve, 1993). Further, the individual being assessed is
often classified using nominal or ordinal scales (i.e., aware/unaware, or
mild/moderate/severe unawareness) which provide only limited information. The assessment, in a clinical setting, may be intimidating for the
person and thus influence the responses given.
The participant/informant discrepancy and the objective test/self-rating
discrepancy have the potential to provide more detailed and reliable indices
of awareness, particularly when used in conjunction with each other to
provide a multi-faceted assessment.
The participant/informant discrepancy scores have the advantage that the
informant is a person who knows the patient well. The scales commonly use
questions which ask about awareness in various settings and thus provide a
more detailed understanding of awareness than can be gathered from the
few general questions used for global clinician ratings. Discrepancy scores
can be calculated to give a degree of unawareness rather than placing the individual in a category. However, the scores are based on the assumption that the
informants rating of the participants ability is more accurate than the participants self-rating. This is not always the case (e.g., Green et al., 1993; Michon
et al., 1994). A study specifically investigating carers accuracy in rating the
patients performance demonstrates that these ratings should be used with

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

181

caution. Richardson and Nadler (1995) asked carers to rate the patients
performance on three activities of daily living (ADLs). One-third of carers
were found to overestimate the patients performance and 20% underestimated. The accuracy rates across the three ADL tasks varied from 50% to
70%. Clare et al. (2002) found that carers ratings of participants were
more accurate than participants self-ratings of their own functioning.
However, the accuracy level of carers ratings was still relatively low. These
results throw into question the use of carer ratings as a sole indicator of
awareness.
The objective test/self-rating discrepancy compares a non-subjective
rating, based on test performance, with participants self-ratings of their performance. The performance of the participant on the test is not influenced by
the opinion of an external party (the informant or a clinician). This method
therefore has the potential to provide an unbiased view of the level of awareness. This is a particularly useful approach if the self-rating questions are
directly related to the format of the objective tests that are used for the comparison, and if the individual can associate the self-ratings with the tasks
being undertaken. It allows for a discrepancy score to be calculated and provides a rating in terms of degree of awareness as opposed to allocating an
individual to a category. Problems may arise if the tests and self-ratings are
not systematically linked or are not naturalistic. Participants may have had
little experience of the memory test on which they are asked to rate themselves and thus cannot be expected to have an accurate perception of how
they may perform.
The Memory Awareness Rating Scale (MARS; Clare et al., 2002) was
developed to try to resolve some of the issues discussed above. In particular,
the scale aimed to provide indices based on more than one mode of assessment and to base the objective test/self-rating discrepancy index on
memory tasks that are analogous to the kinds of memory skills required in
everyday life. It was also designed to ensure that questionnaire items and
objectively-assessed tasks covered equivalent areas of functioning and fundamentally to provide a quantitative measure of awareness which could be used
with participants in the mild stages of AD. The MARS has two separate
methods of measuring awareness. The first involves using the participant/
informant discrepancy. Both the participant and an informant rate the participants ability to perform a number of everyday tasks involving the use of
memory. These tasks are similar to the tasks used in the sub-tests of the Rivermead Behavioural Memory Test (RBMT; Wilson, Cockburn, & Baddeley,
1985). Examples of the situations include remembering a persons name,
remembering a short route and recognising familiar objects. Both raters are
asked to respond using a 5-point scale, indicating how often the participant
would be able to complete the task, from never (0) to always (4). A score
is then produced by subtracting the informants rating from the participants

Downloaded by [University of Connecticut] at 00:08 11 October 2014

182

HARDY, OYEBODE, CLARE

on each of the examples and summing the differences. This is the Participant/
Informant Discrepancy Score (P/I).
The second measure of awareness compares the participants performance
on the RBMT, as expressed in the sub-test standardised profile scores, and his
or her judgement of this performance made after having carried out the relevant sub-test. A 5-point response scale is used, ranging from poor (0) to very
good (4). The Objective Test/Self-Rating Discrepancy Score (O/SR) is then
calculated by subtracting the sub-test score from the self-rating score and
summing the differences for the sub-tests.
The MARS has been shown to have good test-retest reliability and internal
consistency (Clare et al., 2002). The criterion validity when compared to the
Memory Symptoms Questionnaire (MSQ; Kapur & Pearson, 1983) and
Memory Insight Questionnaire (MIQ; Markova, 1997) was also high.
The MARS stands out as the most well-developed systematic means of assessing awareness of memory functioning in people with AD. However, it was
designed for people with early-stage dementia. Both the P/I discrepancy
score and the O/SR discrepancy score might be difficult to use with people
who have more severe cognitive impairment. It would be useful to have
sensitively-designed methods of awareness assessment which can be applied
over a range of severities. This would allow for wider cross-sectional comparisons as well as giving an opportunity for longitudinal studies to use consistent
methods The use of well-designed, multi-faceted methods of assessing awareness with a combination of different measures has the potential to provide an
enhanced and more detailed insight into awareness and its causes and correlates.
In the original study on the development of the MARS participant performance on the RBMT was significantly impaired (Clare et al., 2002), but the
range of profile scores was sufficiently high to allow for analyses of the
data to be conducted. However, in a recent unpublished study (Hardy,
2004), a floor effect was found for RBMT scores. The majority of the 32 participants had MMSE scores of 18 or above and were therefore considered to
have mild dementia. However, almost all participants showed severe impairment on a number of sub-tests of the RBMT. The mean total profile score was
just 2.30 (SD 2.43) out of a possible 24. Other studies, which included participants with more moderate levels of cognitive impairment, have also
experienced floor effects with the RMBT (Cockburn & Keane, 2001;
Kotler-Cope & Camp, 1995).
Since the RBMT profile score is used as the objective score in the calculation of the O/SR discrepancy, this floor effect is problematic in that it invalidates the O/SR comparison on the MARS. Although an over-estimation can
still be obtained on this index, it is not possible to reveal an under-estimation
of memory, creating a potential bias whereby participants might appear to
have less awareness than is actually the case. This floor effect does not
affect the P/I comparison.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

183

The present paper presents adjustments to the MARS which aim to extend
its use to people who have varying levels of memory problems, encompassing
people with moderate dementia as well as those in the early stages. It gives
information about the development, psychometric properties and applicability
of the Memory Awareness Rating Scale Adjusted (MARSA) and describes
the findings obtained when piloting the measure with 41 people who had a
diagnosis of probable/possible AD. This could provide additional information
to further the understanding of awareness in AD, particularly in people with
more moderate levels of cognitive impairment, and could facilitate longitudinal assessment as well as further evaluation of the relationship between awareness level and other factors influencing outcome of intervention.

METHOD
Participants
Participants were recruited from two NHS-based memory clinics. Participants
were included if they had a medical diagnosis of probable AD according to
the NINCDS-ADRDA criteria (McKhann et al., 1984), spoke English as a
first language or fluent spoken English if acquired as a second language,
had a partner/next of kin/close friend who acts as their primary carer and
had no diagnosis of other diseases that might be confounding, e.g.,
Parkinsons disease, depression, mixed dementia.
Unpublished prior study. Thirty two participants took part in the unpublished study (Hardy, 2004) which revealed the floor effect. There were 13
males and 19 females with a mean age of 81.09 years (SD 6.28) and
mean MMSE of 22.19 (SD 3.35).
Pilot study. Ten participants and their next-of-kin took part in piloting a
preliminary version of the MARSA. They were selected prior to the main
study using a similar selection process. There were 7 females and 3 males.
The mean age was 81.3 years (SD 7.73, range 68 95) and mean MMSE
level was 17 (SD 3.85, range 12 26).
Main study. Forty one participants with mild to moderate AD and their next
of kin took part. The sample consisted of 21 females and 20 males with a mean
age of 81.3 (SD 5.90, range 5996). The mean MMSE score (Folstein, Folstein, & McHugh, 1975) was 21.1 (SD 3.4, range 1329). Using the NICE
guidelines (2001) for stages of dementia, 3 (7%) participants had an MMSE
score of 2729 indicating minimal impairment, 22 (54%) had an MMSE of
2026 indicating mild dementia and 16 (39%) had an MMSE score of 1020

184

HARDY, OYEBODE, CLARE

Downloaded by [University of Connecticut] at 00:08 11 October 2014

indicating moderate dementia. As the 3 participants with scores of over 27 had


received their diagnosis after a thorough assessment procedure they were
included in the sample despite their high level MMSE scores on the day of
this study. From this sample, 10 participants were selected to take part in a
test-retest reliability investigation for the MARSA. These participants were
selected to provide a range of levels of cognitive impairment representative of
the overall sample. The mean MMSE score for this subgroup was 20.2
(SD 4.2, range 1326). An independent sample t-test demonstrated that
there was no significant difference between the two groups, t(49) 0.437.

DEVELOPMENT OF THE MARSA


The MARS consists of two measures of awareness both based around the
RBMT. The P/I discrepancy score uses the discrepancy between participants
self-ratings and informants ratings of the participants memory functioning
on tasks similar to the sub-tests of the RBMT. The O/SR discrepancy
score uses discrepancies between participants actual performance on the
sub-tests of the RBMT and their self-rating of performance after completing
each sub-test. The Memory Awareness Rating Scale Adjusted (MARSA)
was developed by altering the objective test used in the original MARS.
The objective test component of the MARSA (the Memory Test) used
scores derived only from selected sub-tests from the RBMT (i.e., those not
showing a floor effect) and these were combined with ratings based on subtests taken from another measure, the Severe Impairment Battery (SIB;
Panisset, Roudier, Saxton, & Boller, 1994), to replace those that had produced
a floor effect in the unpublished prior study.
The selection of RMBT sub-tests to be included in the Memory Test (MT)
was made by identifying those sub-tests that did not produce floor effects in
the unpublished prior study.
Using the standardised profile scores for the RBMT sub-tests, 9 out of 13
were identified as producing a floor effect. On these, more than 80% of participants obtained a profile score of zero. Using the raw scores provided a more
optimistic perspective, with a higher proportion of people scoring above zero
on many of the sub-tests, including face recognition, message (immediate),
pictures and route (immediate) sub-tests. The date sub-test, which is administered alongside the orientation questions, was incorporated in the raw score
total of the orientation sub-test and not scored separately. By combining
the orientation and date sub-tests for the participants over 60% obtained a
positive score on this test. From the raw scores it was apparent that for 7
sub-tests over 40% of participants did not obtain a positive score. These
were the name, belonging, appointment, story (immediate and delayed),
route (delayed) and message (delayed) sub-tests. Therefore scores on these

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

185

sub-tests were not included in the Memory Test for the MARSA. An exception was made, however, for the route and message (delayed) since almost
60% of participants scored at least one point on these sub-tests.
In total, scores for 7 sub-tests from the RBMT were used within the
Memory Test for the MARSA. Additional sub-tests were sought as alternatives to the original sub-tests on which floor effects were observed.
The Severe Impairment Battery was considered a suitable measure for
selecting possible sub-tests with a lower threshold. This test was developed
for use with patients in the moderate and severe stages of dementia and has
been shown to have good psychometric properties (Barbarotto et al., 2000;
Panisset et al., 1994). Scores of performance on suitable sub-tests from the
SIB were used together with the scores on the 7 suitable sub-tests from the
RBMT to provide the Memory Test for the MARSA.
Certain considerations were kept in mind when selecting suitable sub-tests
to be used within the Memory Test and in determining the positioning of the
different sub-tests within the testing session.
1. The SIB sub-tests selected for use were as similar as possible to those
found to show floor effects in the RBMT in terms of the type of memory
tested.
2. The 7 sub-tests from the RBMT were administered in a similar order to
their use in the full measure.
3. For any sub-tests with a delayed component the time lapse between the
presentation and the delayed recall was kept as similar as possible to the
time in the original test from which it came.
To reflect the amendments to the sub-tests used in the Memory Test in the
MARSA, new examples of situations were drawn up for use in the P/I discrepancy section. Similar to the original MARS, these examples were designed
to reflect everyday situations to enable participants to associate with them
more easily (for more information contact the first author). An example of
one situation is:
Somebody gives you a simple instruction. For example, can you close the
window? Do you think you would remember the instruction straight after you
were given it?
The 5 point response scale (04) was the same as in the original MARS.
To enable the participants raw scores on the Memory Test, rather than
profile scores, to be used within the O/SR discrepancy in the MARSA, the
score on each sub-test was converted to fit with a 0 4 scale. The raw
scores on the Memory Test were converted using the following formula:
CS (AS/TS)4 where CS Converted Score, AS Actual Score,
TS Total Possible Score.

186

HARDY, OYEBODE, CLARE

Downloaded by [University of Connecticut] at 00:08 11 October 2014

A preliminary version of the MARSA was piloted with 10 people who had
a diagnosis of probable AD and their next-of-kin. In the pilot study, participants obtained points on the majority of sub-tests. However, no-one scored
points on the Instruction (delayed) sub-test from the SIB and so this was
not used in the MARSA. This left the Memory Test with 14 sub-tests of
memory and 14 corresponding items on the MARSA rating scales. The
final list of sub-tests used is shown in Table 1. All items were scored using
0 4 rating scales giving maximum scores of 56 on each component scale,
whilst the discrepancy indices have a potential range of minus 56 to 56.

Procedure
The purpose of the study and the procedure were explained to the participant
and his/her next-of -kin. The participant was asked some simple questions
about the study to verify he/she had a sound understanding. Informed
consent was then obtained from both the participant and the next-of-kin.
Participants first worked through the participant-rating scale of the
MARSA. Following this the sub-tests of the Memory Test were administered
and after each sub-test participants were asked to rate their performance using
a five-point response scale from very poor (0) to very good (4).
The next-of-kin completed the informant rating scale. This used the same
statements and rating scale as the participant rating scale, but all situations
referred to the participant.

TABLE 1
Range of sub-tests used for the MT
Sub-Test
Remembering a coloured blockpresentation and test
Remembering two objectspresentation and test
Remembering a namepresentation and test
Picture Recognitionpresentation
Instructionimmediate recall
Picture Recognitiontest
Face Recognitionpresentation
Route and messageimmediate recall
Face Recognitiontest
Orientation and date
Namedelayed recall
Route and messagedelayed recall
Two objectsdelayed
Remembering a Shapepresentation and test

Origin
Severe Impairment Battery
Severe Impairment Battery
Severe Impairment Battery
Rivermead Behavioural Memory Test
Severe Impairment Battery
Rivermead Behavioural Memory Test
Rivermead Behavioural Memory Test
Rivermead Behavioural Memory Test
Rivermead Behavioural Memory Test
Rivermead Behavioural Memory Test
Severe Impairment Battery
Rivermead Behavioural Memory Test
Severe Impairment Battery
Severe Impairment Battery

AWARENESS IN MODERATE ALZHEIMERS DISEASE

187

After the interview was completed, the participants and their next-of-kin
were given the opportunity to provide feedback about the measure they had
just completed.
The 10 participants (and the next-of-kin) taking part in the test-retest
reliability investigation completed the relevant sections of the MARSA on a
subsequent occasion between 4 and 22 days later (mean 13.7, SD 9.63).

Downloaded by [University of Connecticut] at 00:08 11 October 2014

RESULTS
Means and standard deviations were calculated for the individual scales of the
MARSA (see Table 2). The mean for the participants self-rating scale was
much higher than that for the informants rating scale. Similarly, the
minimum score for the participants was far higher than the rating given by
the informants. This suggests that generally participants were rating themselves as functioning at a higher level than the informant rated them. This
is also evident from the mean P/I discrepancy score which is well above
zero, although the presence of a negative score in the range demonstrates
that some participants were actually rating their ability lower than the informant. The mean for the O/SR discrepancy score is much lower than that for
the P/I. This suggests that participants were more accurate at assessing their
performance in relation to a task they had just completed than they were at
rating their ability in everyday settings.
Both the raw scores and converted scores on the Memory Test demonstrated a fairly broad spread and followed approximately normal distributions. The range of converted scores was 13 43 (possible range 0 56),
with a mean of 25.3. One sample Kolmogorov-Smirnov tests confirmed
that neither the raw scores nor the converted scores differed significantly
from the normal distribution (z 0.34 and z 0.52). This suggests that the
Memory Test contains an appropriate set of sub-tests to use with the
present population, and that these are suitable for people with moderate as
well as milder forms of AD.
TABLE 2
Descriptive statistics of MARSA scales
Scale
Participant rating
Informant rating
P/I Index
Post-test rating
Memory test
O/SR index

Mean total

Standard deviation

Range

Possible range

41.8
25.7
16.0
34.8
39.2
4.5

7.2
9.9
10.6
7.6
7.4
5.8

2855
145
(27)37
18.950.2
2051
(212)17.4

056
056
(256)56
056
056
(256)56

188

HARDY, OYEBODE, CLARE

By comparing the spread of data for the participants completing the


Memory Test with participants who completed the RBMT in the unpublished
prior study (see Figure 1), it can be seen that the Memory Test produced a
greater range of scores and that participants were scoring well above zero.
Participants are neither hitting the floor nor reaching the ceiling. This highlights further that the measure is appropriate to use with people with mild
to moderate cognitive impairment.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

Link between MARSA and degree of dementia


MMSE scores and the scores on the Memory Test were, not surprisingly,
significantly correlated (Pearsons r .44, p , .01), indicating that the
milder the degree of general cognitive impairment the better the performance
on the Memory Test. However, the MMSE and O/SR discrepancy scores
are not significantly correlated (r 2.15, p .69), showing that level of
awareness of performance was not linked to degree of general cognitive
impairment.
The relationship between degree of dementia and awareness was investigated further by dividing the 41 participants into two groups of those with
minimal or mild dementia (MMSE 21) and those with moderate dementia

Figure 1. Box plots comparing distribution of the converted Memory Test scores used in the MARSA
and converted Profile Scores on the RBMT used in the MARS.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

189

(MMSE 10 20). Independent sample t-tests were carried out between these
groups on all aspects of the MARSA and an alpha level of .05 was used to
assess the significance of differences. These revealed that those with
minimal/mild dementia had significantly better scores than those with moderate dementia on the Memory Test (41.64, 35.44, t 2.83, p , .01). Informants rated the minimal/mild group as having better performance than the
moderate dementia group (29.00, 20.56, t 2.89, p , .01) and this was
also true of participants ratings of themselves on the participant rating
scale (43.74, 38.66, t 2.34, p , .05) and their self-rating following performance on the Memory Test (36.97, 31.45, t 2.42, p , .05). However,
there were no significant differences between those with minimal/mild
dementia and those with moderate dementia on either of the two awareness
indices, P/I: 14.74, 17.97, t(40) 20.95, p .35; O/SR: 4.75, 4.00,
t(40) 0.41, p .69.

Psychometric properties
An initial analysis of the psychometric properties of the MARSA investigated
internal consistency, the inter-relationship between the component scales and
test-retest reliability.
Cronbachs alphas for the three rating scales showed that they had excellent internal consistency (participant rating 0.84, informant rating 0.90
and self rating following performance 0.84), and the internal consistency
of the performance score was also acceptable (converted score 0.68).
The slightly lower alpha for the converted scores is unsurprising since the
sub-tests elicit different types of memory and thus participants may have
been more able on some memory tasks than others (e.g., recognition over
free recall).
Pearsons product moment correlations were used to examine the interrelationship between the two rating scales completed by the participant (participant rating and self-rating following performance) and the two discrepancy
scores (P/I and O/SR). There was a very weak but statistically significant
relationship between the two participant rating scales (r .30, p .05)
and between the two discrepancy scores (r .32, p , .05).
Test-retest reliability was high for the informant rating (0.89), self-rating
following performance (0.90), converted Memory Test score (0.79), P/I
discrepancy score (0.87) and O/SR discrepancy score (0.86). Reliability
for the participant rating was acceptable (0.64).

Relative accuracy of carer and participant


To investigate the accuracy of participant and informant judgements of participant memory ability, the respective rating scores were compared in each
case with the participants converted Memory Test score. An accuracy

Downloaded by [University of Connecticut] at 00:08 11 October 2014

190

HARDY, OYEBODE, CLARE

score was created for both the participant and the informant by subtracting the
converted Memory Test score from the respective rating score. The bar chart
(Figure 2) shows the accuracy scores for the participant and the informant. It
can be seen that the majority of participants seemed to overestimate their
memory ability. Informants, on the other hand, tended to underestimate participant ability. Paired sample t-tests showed that the mean participant rating
was significantly different from the mean converted Memory Test score,
t(40) 4.33, p , .01, as was the informant rating, t(40) 26.27, p , .01.
Taking the absolute accuracy scores, the means for participants and informants were 9.06 and 11.4, respectively. Paired sample t-tests demonstrated
that these scores were not significantly different from each other. Therefore,
although informants were generally underestimating their ability and participants were generally overestimating their ability, there was no difference in
the absolute level of inaccuracy between participants and informants.

DISCUSSION
The application of the MARSA with 41 people with a diagnosis of AD and
levels of severity ranging from moderate to minimal has demonstrated that
it is a suitable measure for use with this population.
While memory impairment and rating of memory by participants and
informants differed significantly between those with minimal or mild dementia and those with moderate dementia, there was no difference on either
awareness index between these two groups, indicating that degree of

Figure 2. Accuracy scores for participants and informants.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

191

awareness is not a simple function of degree of general cognitive impairment.


This is consistent with some (Michon et al., 1994; Dalla Barba et al., 1995)
but not all previous findings.
Internal consistency and test-retest reliability were shown to be satisfactory
for all the scales and the selected memory sub-tests. The slightly lower testretest reliability for the self-rating may be explained by the fact that
participants were completing the rating having carried out the actual test of
their memory on a previous occasion. They may have adjusted their opinion
of their ability following the outcome of their performance. This explanation
is supported by the mean rating scores for the self-rating, which were 41.7
and 39.6 for the test and retest, respectively. However, these scores are
not significantly different from each other (as shown by a paired sample t-test).
The weak relationship between the two discrepancy scores coincides with
the original MARS findings. Clare et al. (2002) also found there was only a
very weak correlation between the two indices of awareness. Other researchers have found that different methods of measuring awareness are not related
(e.g., Derouense et al., 1999). This finding may be a reflection of the complex
nature of awareness, with the different measures tapping different aspects of
the awareness process.
There was a general trend among the sample for participants to overestimate their performance prior to carrying out memory tasks. In contrast, informants showed a tendency to underestimate the ability of participants. The
finding that participants overestimate their ability fits with much of the literature (e.g., Green et al., 1993; Michon et al., 1994) and supports the existence
of some unawareness for memory deficits in people with AD. Similarly, the
fact that informants commonly underestimate performance has been demonstrated previously (e.g., Clare et al., 2002; Richardson & Nadler, 1995).
However, one major difference in the current findings relates to the absolute
accuracy of informants and participants. Other studies have shown that,
although informants often underestimate participants performance, they
generally provide more accurate judgements than the participants themselves
(Clare et al., 2002). In the present study there was no difference between the
participants and informants in terms of absolute accuracy. Thus, participants
were as accurate as informants, but there was a tendency for participants to
overestimate and informants to underestimate performance.
One limitation with the current study was that the criterion validity of the
MARSA was not investigated. However, the original MARS was shown to
have satisfactory criterion validity. Further, all descriptions used in the rating
scales of the MARSA are based on everyday aspects of memory, such as
remembering a name and remembering the colour of an item. Cavanaugh
(2000) states that the more association individuals have with a situation, the
more accurate their assessments of their memory ability within that situation
are. This is thought to be particularly true for the elderly population.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

192

HARDY, OYEBODE, CLARE

In conclusion, the majority of awareness measures involving self-ratings that


have been used previously are only suitable for use with people with mild
memory problems (Clare et al., 2002; Dalla Barba et al., 1995). However, it
is important to look at a wider range of cognitive functioning and develop
measures that might allow us to follow people longitudinally to observe any
changes in awareness ratings over time and following intervention. This
research has extended a measure of awareness to make it suitable for use with
participants with moderate as well as mild AD, avoiding floor effects on the
memory tasks with those with moderate AD and ceiling effects in those with
milder cognitive impairment. This study has shown that it is possible to investigate the level of awareness in people with more moderate dementia using
similar paradigms to those adopted for people with mild dementia.

REFERENCES
Agnew, S. K., & Morris, R. G. (1998). The heterogeneity of anosognosia for memory impairment in Alzheimers disease. Aging and Mental Health, 2, 7 19.
Barbarotto, R., Cerri, M., Acerbi, C., Molinari, S., & Capitani, E. (2000). Is SIB or BNP better
than the MMSE in discriminating the cognitive performance of severely impaired elderly
patients? Archives of Clinical Neuropsychology, 15, 1 19.
Cavanaugh, J. C. (2000). Metamemory from a social-cognitive perspective. In D. Park &
H. Schwarz (Eds.), Cognitive aging: A primer (pp. 115 130). Hove, UK: Psychology Press.
Clare, L. (2003). Managing threats to self: Awareness in early stage Alzheimers disease. Social
Science and Medicine, 57, 1017 1029.
Clare, L. (2004a). The construction of awareness in early-stage Alzheimers disease: A review
of concepts and models. British Journal of Clinical Psychology, 43, 117 196.
Clare, L. (2004b). Awareness in early-stage Alzheimers disease: A review of methods and
evidence. British Journal of Clinical Psychology, 43, 177 196.
Clare, L., Markova, I. S., Verhey, F., & Kenny, G. (in press). Awareness in dementia: A review
of assessment methods and measures. Aging and Mental Health.
Clare, L., Wilson, B. A., Carter, G., Roth, I., & Hodges, J. (2002). Assessing awareness in earlystage Alzheimers disease: Development and piloting of the Memory Awareness Rating
Scale. Neuropsychological Rehabilitation, 12, 341 362.
Clare, L., Wilson, B. A., Carter, G., Roth, I., & Hodges, J. (2004). Awareness in early-stage
Alzheimers disease: Relationship to outcome of cognitive rehabilitation. Journal of
Clinical and Experimental Neuropsychology, 26, 215 226.
Cockburn, J., & Keene, J. (2001). Are changes in everyday memory over time in autopsy
confirmed Alzheimers disease related to changes in reported behaviour? In L. Clare &
R. Woods (Eds.), Neuropsychological rehabilitation (pp. 201 217). Hove, UK: Psychology
Press.
Dalla Barba, G., Parlato, V., Iavarone, A., & Boller, F. (1995). Anosognosia, intrusions
and frontal functions in Alzheimers disease and depression. Neuropsychology, 33, 247259.
Derouesne, C., Thibault, S., Lagha-Pierucci, S., Baudouin-Nadec, V., Ancri, D., & Lacomblez,
L. (1999). Decreased awareness of cognitive deficit in patients with mild dementia of the
Alzheimer type. International Journal of Geriatric Psychiatry, 14, 1019 1030.
Folstein, M. J., Folstein S. E., & McHugh, P. R. (1975). Mini Mental State Examination: A
practical method for grading the cognitive state of the patients for the clinician. Journal
of Psychiatric Research, 12, 189 198.

Downloaded by [University of Connecticut] at 00:08 11 October 2014

AWARENESS IN MODERATE ALZHEIMERS DISEASE

193

Green, J., Goldstein, F. C., Sircockman, B. E., & Green, R. C. (1993). Variable awareness of
deficits in Alzheimers disease. Neuropsychiatry, Neuropsychology and Behavioural
Neurology, 6, 159 165.
Hardy, R. (2004) Coping and awareness in Alzheimers disease. Unpublished PhD thesis,
University of Birmingham, UK.
Kapur, N., & Pearson, D. (1983). Memory symptoms and memory performance of neurological
patients. British Journal of Psychology, 74, 409 415.
Koltai, D. C., Welsh-Bohmer, K. A., & Schmechel, D. E. (2001). Influence of anosognosia
on treatment outcome among dementia patients. Neuropsychological Rehabilitation, 11,
455 475.
Kotler-Cope, S., & Camp, C. J. (1995). Anosognosia in Alzheimers disease. Alzheimer Disease
and Associated Disorders, 9, 52 56.
Loebel, J. P., Dager, S. R., Berg, G., & Hyde, T. S. (1990). Fluency of speech and selfawareness of memory deficit in Alzheimers disease. International Journal of Geriatric
Psychiatry, 5, 41 45.
Markova, I. S. (1997). Towards a structure of insight: A clinical and conceptual analysis.
Unpublished thesis, University of Glasgow.
McDaniel, K. D., Edland, S. D., Heyman, A., & CERAD Clinical Investigators (1995).
Relationship between the level of insight and severity of dementia in Alzheimers
disease. Alzheimer Disease and Associated Disorders, 9, 101 104.
McKhann, G., Drachman, D., Folstein, M. J., Katzman, R., Price, D., & Stadlan, E. (1984).
Clinical diagnosis of Alzheimers disease: Report of the NINCDS-ADRDA work group.
Neurology, 34, 939 944.
Michon, A., Deweer, B., Pillon, B., Agid, Y., & Dubois, B. (1994). Relation of anosognosia to
frontal lobe dysfunction in Alzheimers disease. Journal of Neurology, Neurosurgery and
Psychiatry, 57, 805 809.
Migliorelli, R., Teson, A., Sabe, L., Petracchi, M., Leiguarda, R., & Starkstein, S. (1995). Anosognosia in Alzheimers disease: A study of associated factors. Journal of Neuropsychiatry
and Clinical Neurosciences, 7, 338 344.
Panisset, M., Roudier, M., Saxton, J., & Boller, F. (1994). Severe Impairment Battery:
A neuropsychological test for severely demented patients. Archives of Neurology, 51, 4145.
Richardson, E. D., & Nadler, J. D. (1995). Accuracy of caregiver estimates of dementing
patients performances on standard ADL tasks. Archives of Clinical Psychology, 10,
384 385.
Seltzer, B., Vasterling, J. J., Yoder, J., & Thompson, K. A. (1997). Awareness of deficit in
Alzheimers disease: Relation to caregiver burden. Gerontologist, 37, 20 24.
Sevush, S., & Leve, N. (1993). Denial of memory deficits in Alzheimers disease. American
Journal of Psychiatry, 150, 748 751.
Smith, C. A., Henderson, V. W., McClearly, C. A., Murdock, G. A., & Buckwalter, J. G. (2000).
Anosognosia and Alzheimers disease: The role of depressive symptoms in mediating
impaired insight. Journal of Clinical and Experimental Neuropsychology, 22, 437 444.
Weinstein, E. A., Friedland, R. P., & Wagner, E. E. (1994). Denial/unawareness of impairment
and symbolic behavior in Alzheimers disease. Neuropsychiatry, Neuropsychology and
Behavioural Neurology, 7, 176 184.
Wilson, B. A., Cockburn, J., & Baddeley, A. (1985). Rivermead Behavioural Memory Test.
Bury St Edmunds, UK: Thames Valley Test Company.
Manuscript received August 2004
Revised manuscript received April 2005