Relationships between autobiographical memory, identity
dementia.
in
and awareness early-stage
Emma C. Naylor, University of Wales Bangor
Address for correspondence:North Wales Clinical Psychology Programme, School of
Psychology, University of Wales Bangor, Bangor, Gwynedd, LL57 2AS, United
Kingdom.Telephone:+441248382205,Fax: +441248383718,
E-mail: pspe32@bangor.
ac.uk
LARGE SCALE RESEARCH PROJECT
CONTENTS
Page
Abstract
....................................................................
i
Declarations
...............................................................
Acknowledgments
......................................................
iv
SECTION ONE - ETHICS PROPOSAL
Introduction
...............................................................
Ethics Proposal
............................................................
Appendix I
Ethical approval letters
Appendix 2
Invitation letters, information sheets, consent forms
Appendix 3
Measures
Appendix 4
Researchand Development application
Appendix 5
Researchand Development approval letter
SECTION TWO - LITERATURE REVIEW
Title page
..................................................................
I
Abstract
2
.....................................................................
Literaturereview
.........................................................
3
References
.................................................................
18
Appendix I
Notesfor contributors
SECTION THREE - RESEARCH PAPER
Title page
..................................................................
I
Abstract
.....................................................................
2
Introduction
3
Method
...............................................................
.....................................................................
8
Results
......................................................................
14
Discussion
..................................................................
20
References
..................................................................
25
Appendix I
Tables and figure identified in the text
Appendix 2
Notes for contributors
SECTION FOUR - DISCUSSION PAPER
Title page
..................................................................
I
Discussion paper
..........................................................
2
References
..................................................................
SECTION FIVE - WORD COUNT
13
i
Relationshipsbetween autobioUgphical memory, identily. and awarenessin earlystaizedementia.
ABSTRACT
This large-scaleresearchproject is presentedin two parts. The first part constitutes a
in
literature
to
the
memory
and
sense
autobiographical
of
self
of
review
relating
earlybrief
dementia.
indicate
It
how
the
theories
that
overview
of
a
provides
stage
be
followed
by a review of
self
sense
of
might
related,
autobiographicalmemoryand
the changesobservedin these constructsin associationwith early-stagedementia.
Despite some empirical support;a limited amount of researchhas been conducted
between
the
to
autobiographical memory and aspectsof self.
regard
relationship
with
This may reflect a number of conceptual and methodological difficulties.
Also,
inferred
by
in
identity
are often
caregivers, based on changes in behaviour
changes
dementia
the
is rarely sought. Tbus, identity
the
person
view
of
with
abilities;
and
in
is
change usually considered social rather than cognitive terms. Despite this, the
hypothesised relationship between autobiographical memory and sense of self is
interventions,
in
such as reminiscence.
utilised psychosocial
The secondpart of this project examinesthe relationshipsbetweenautobiographical
identity,
and awarenesswithin a sampleof peoplewith diagnosesof earlymemory,
dementia.
The
30
stage
participants,recruitedvia a local memory clinic, were each
administeredthe AutobiographicalMemory Interview,TennesseeSelf-ConceptScale,
Second Edition, and Memory AwarenessRating Scale. Analysis
using partial
correlations,controlling for generalcognitive ability, revealedthat: greaterrecall of
early adulthoodpersonalsemanticand incident memorieswas associatedwith more
ii
definite senseof identity, greaterrecall of mid-life incidentswas associatedwith less
definite identity but greater awareness,and greater awarenesswas associatedwith less
definite identity. It is suggestedthat memories from the mid-life period may contain
initial instances of awareness of changes in memory functioning, with greater
awarenessof change being associatedwith less certain identity, as knowledge about
self is updated.
iv
ACKNOWLEDGEMENTS
I would like to take this opportunity to thank all those who have contributed to this
thesis.
Firstly, I would like to thankDr Linda Clarefor all her guidance,supportandadvice.
I would also like to thank Dr Kate Jones for the training she provided on the
Autobiographical Memory Interview, and for all her other help and support.
A big thank you to everyoneat the memoryclinic, especiallyNia for whom nothing
ever seemedto be too much trouble.
Thanks to all those from the North Wales Clinical Psychology Programme who
providedhelp andadvice.
Thanks to Chris, Eloise, and Miles for all their love. I am eternally grateful.
Finally, a heartfeltthankyou to all thoseindividualswho kindly agreedto participate
in this research.
SECTION ONE - ETHICS PROPOSAL
INTRODUCTION
This large-scaleresearchproject forms part of a larger, ongoing study led by Dr Linda
Clare,entitled'Understandingthe experienceof memorydifficulties'. The aim of the
larger project is to provide a comprehensiveprofile of awarenessamong people with
mild to moderatedementiaand mild cognitiveimpairment. This thesisexaminedthe
relationships between autobiographical memory, identity and awarenessin a sample
of peoplewith early-stagedementia. What follows is the full ethicalproposalfor the
overall study, along with the relevant documentation.
3rd party copyright material excluded from digitised thesis.
Pleaserefer to the original text to see this material.
SECTION TWO - LITERATURE REVIEW
CONTENTS
Page
Title page
..................................................................
Abstract
.....................................................................
Literaturereview.........................................................
References
.................................................................
Appendix I
Notesfor contributors
18
Autobiographicalmemoryand senseof self I
Running head: autobiographical memory and senseof self
What arethe implicationsof changesin autobiographicalmemory
for senseof self in early-stagedementia?
Emma C. Naylor*, University of Wales Bangor
Linda Clare PhD, University of Wales Bangor
North Wales Clinical PsychologyProgramme,School
*Addressfor correspondence:
Wales
Bangor,
Gwynedd,
Bangor,
University
LL57
2AS,
United
Psychology,
of
of
Kingdom.Telephone:+441248382205,Fax: +441248383718,
E-mail: pspe32@bangor.
ac.uk
Autobiographical memory and senseof self
2
Abstract
This review examinesthe literature relating to autobiographical memory and senseof
brief
indicate
dementia.
It
the
theories
in
that
overview
of
a
provides
self early-stage
how autobiographical memory and sense of self might be related, followed by a
in
in
these
the
association with early-stage
constructs
changes observed
review of
dementia. Despite some empirical support, a limited amount of research has been
between
to
the
autobiographical memory and
relationship
conducted with regard
aspects of self.
difficulties.
This may reflect a number of conceptual and methodological
Also, changes in identity are often inferred by caregivers, based on
dementia
is
in
behaviour
the
the
of
view
person
with
abilities;
and
rarely
changes
is
in
identity
Tbus,
considered
change
usually
social rather than cognitive
sought.
terms. Despite this, the hypothesisedrelationship between autobiographical memory
interventions,
in
is
such as reminiscence.
and senseof self utilised psychosocial
Autobiographicalmemoryand senseof self 3
What are the Implications of Changesin Autobiogrgphical Memply for Senseof Self in
Early-Stage Dementia?
Autobiographical memory consists of stored information associated with the self
(Brewer, 1986). It relates to major life goals, powerful emotions and personal
for
been
has
the experienceof personhood,
therefore
essential
seen
as
meanings,and
i. e. of enduring as an individual over time (Conway & Pleydell-Pearce,2000).
Impairmentsof autobiographicalmemory have been observedin associationwith
dementia,
investigations
having focused, primarily, on
systematic
with
early-stage
identifying the underlying cerebralstructures(e.g. Levine, 2004), or on developing
models of long-term memory storage (e.g. Westmacott, Leach, Freedman, &
Moscovitch, 2001). However, the emergenceof a new culture of dementia care
(Kitwood, 1993,1997), which emphasisesthe need to consider the individual
biographies
living
of
people
and
experiences
with dementia, suggeststhat greater
be
consideration given to the subjective experienceof those who are experiencing
in
changes their autobiographicalmemory, and the implications this has for care and
interventions.
'Mis review seeks to provide a brief overview of the theoretical literature on
its
memory
and
autobiographical
relation to self, to explore the current state of
knowledgewith respectto the changesin autobiographicalmemory associatedwith
early-stagedementia,and to considerthe implicationsthat thesechangeshave for the
subjectiveexperience,in termsof impacton senseof self, of thosein the early stagesof
I
the disease.Studiesfor inclusionin this review were identified by conductingsearches
of the computeriseddatabases:PsychINFO; Medline; Web of Science; and the
Cochrane Library. The term 'dementia' was coupled
with the search terms:
Autobiogaphical memoryand senseof self 4
identity.
broad
These
terms were chosen in order
and
autobiographical memory, self,
to gain the widest coverage possible, thus ensuring that all relevant studies were
identified. No limit was applied to the period to be searchedbut it was specified that
in
j
books
English were required.
peer-reviewed oumals and
How might autobiographicalmemoryrelate to seýP
Autobiographical memory is a cognitive construct, currently conceptualised as
independent
two
components,namely personal semantic memory
relatively
comprising
incident
(e.
memory
g. Baddeley, 1992; Kopelman, Wilson, & Baddeley,
and personal
1989). Personal semantic memory refers to memory for personal factual information
that Js not contextually bound; whereas, personal incident memory is memory for
specific personal events, which include detailed contextual information such as time
2004).
(Addis
&
Tippett,
and place
Threebroadfunctionsof autobiographicalmemory have beenproposed(Bluck, Alea,
Habermas,& Rubin, 2005):directive, social,and self. The directive function involves
using the past to guide present, and future, thought and behaviour, with
autobiographicalmemory serving as an aid to problem solving and supportingthe
developmentof attitudesand opinions. The social function concernsthe
sharing of
personalmemoriesin order to developor maintain intimacy, to teachand inform, and
to elicit and provideempathy. The self function is concernedwith supportinga sense
of continuityof self, andvalidatingand supportingself-schemas.
Autobiographicalmemoryappearsto developin early childhood,
with representations
of events experiencedon more than one occasion, or single events of particular
significance to the individual, being transferred from a temporary holding
system of
Autobiographicalmemoryand senseof self 5
longer
lasting
into
(Nelson,
1993). A reliable
memory
a
memory
system
episodic
distribution of autobiographicalmemoriesacrossthe lifespan is elicited from healthy
(Fitzgerald
&
Lawrence, 1984; Fromholt
methods
using
a
of
adult participants,
variety
& Larsen, 1991). Rubin, Wetzler, & Nebes (1986) developed a three-component
model reflecting this profile consistingof-. a period of childhood amnesiawith few
memories;a reminiscencecomponent,resultingin the overrepresentation
of memories
from early adulthood,termed'the reminiscencebump', emergingafter the ageof about
35; and, after a reductionin the numberof mid-life memories,an increasedfrequency
of memoriesfrom the most recentyears,accountedfor by a retentioncomponent. It
has been hypothesisedthat the reminiscencebump reflects the high accessibilityof
due
this
to the original encodingconditions,in terms of
to
period,
memoriesrelating
laden,
important,
being
emotionally
or self-relevant (Rubin et al., 1986). Many
events
for
first
in
the
time
encountered
are
early adulthood and are distinctive due to
events
their novelty and the effort involved in attributing meaning to them. This period also
intense
time
a
of
self-orientated activity, leading to the construction of a stable
reflects
identity and life narrative (Fitzgerald, 1988,1996,1999).
In terms of the structureof autobiographicalmemory, Conway and Bekerian (1987)
proposedthreelevels:lifetime periods,which are substantialperiodsof time definedby
major ongoing situations;generalevents,which are repeatedand/or extendedevents
that covera period of daysto months;and event-specificknowledge,which comprises
images, feelings and more specific details of general events. These levels
are
hierarchically-organised,
with information relating to lifetime periods being the least
brain
damage,whilst event-specificknowledgeis the
to
the
effects
of
vulnerable
most
loss
(Barsalou, 1988; Conway & Rubin, 1993). Lifetime
to
vulnerable
periods and
Autobiographicalmemoryand senseof self 6
the
that
themes
cue
and
retrieval of eventcontextualise
events
represent
general
being
1992),
the
these
themes.
knowledge
(Conway,
main
source
of
with
self
specific
Severaltheoristshaveproposedthe existenceof a bi-directional relationshipbetween
Conway
1988).
Pleydell-Pearce
Neisser,
(e.
and
autobiographicalmemoryand self g.
(2000) developeda model of autobiographicalmemory construction, based on a
dynamic relationship between autobiographicalmemories and aspectsof the self.
Within this model the goals of the working self form a subsetof working memory
in
behaviour,
in
to
that
and
order
operate
effectively
cognition
shape
control processes
the world. The working self is a mental model of the capacitiesand functionsof the
in
Autobiographical
its
memory.
autobiographical
are
grounded
goals
system, and
knowledge is encodedthrough the goal structure of the working self, which also plays
during
The
in
memories
remembering.
working self and
specific
constructing
a role
base
knowledge
converge within a self-memory system, to allow
autobiographical
When
the
remembering.
autobiographical
goals of
the working
self
and
in
implies
knowledge
breakdown
in the normal
this
are
opposition,
a
autobiographical
functioning of the system. Failures to resolve conflicts within the sclf-memory system
including
disorders,
from
those
of
resulting
a
range
neurological damage
may underlie
to the frontal lobes, such as impaired awareness of functioning (Agnew & Morris,
1998).
In summary,autobiographicalmemorycomprisesdifferent structuralcomponents,with
the potentialfor theseto be selectivelyimpaired. Autobiographicalmemoriesare not
but
fixed
are reconstructionsguided by the self, in which
representations,
as
stored
informationrelevantto the current situation is combined. This theoreticalperspective
impairment
indicates
that
to autobiographicalmemory could impact on senseof
clearly
Autobiographical memory and senseof self
7
influence
in
time
the type of
could
of
self
over
sense
self, whilst changes
autobiographicalmemoriesconstructed.
How is autobiographical memory affected in early-stage dementia?
Most studies of autobiographicalmemory, in healthy older adults, report the
distributionacrossthe lifespandiscussedearlier(Rubin et al., 1986). However,several
impairment
in
the
of
autobiographical
of
memory
studies
report
profiles
empirical
early-stages of various types of
dementia.
Findings
generally indicate a
disproportionate impairment of recent relative to remotely acquired autobiographical
disease,
in
Alzheimer's
with
early-stage
association
as a result of damageto
memories
the hippocampal complex; with a reversal of this temporal gradient in people with
is
by
damage
dementia,
to the neocortex (Addis &
which
underpinned
semantic
Tippett, 2004).
Significant impairment of personal incident memory was found in people with earlystage Alzheimer's disease relative to age-matched controls (Dorrego et al., 1999;
Fromholt & Larsen, 1991; Fromholt, Larsen, & Larsen, 1995; Graham & Hodges,
1997; Greene & Hodges, 1996; Greene, Hodges, & Baddeley, 1995; Kopelman, 1989;
Piolino et al., 2003b; Sagar, Cohen, Sullivan, Corkin & Growdon, 1988). All of these
Fromholt
except
and Larsen (199 1), and Fromholt et al (1995) found a temporal
studies
being
the most impaired.
with
recent
memories
gradient,
Impairment of personal
semantic memory was also found (Graham & Hodges, 1997; Greene & Hodges, 1996;
Greeneet al, 1995; Kopelman, 1989), but only Kopelman reported a temporal
gradient.
In contrast to the temporal gradients observed in association
with early-stage
Alzheimer'sdisease,Graharnand Hodges(1997),Nestor,Graham,Bozeat,Simons
and
Autobiographicalmemoryand senseof self 8
Hodges (2002), and Snowden, Griffiths and Neary (1996) found superior recall for
incident
memories, compared with those from
recent personal semantic and personal
in
association with early-stage semantic dementia.
and
early
adulthood,
childhood
Piolino, Belliard, Desgranges,Perron, & Eustache (2003a) also found superior recall
for personalsemanticmemoriesfrom the recentlife period, alongsidegood recall for
life
from
incident
periods.
all
memories
personal
These findings have been considered in relation to the debate surrounding models of
long-term memory storage.
The standard model of memory consolidation
(McClelland, McNaughton, & O'Reilly, 1995; Murre, 1996; Squire & Alvarez, 1995;
Teng & Squire, 1999) posits that the hippocampal complex is responsible for memory
into
hippocampally-independent
time
a
over
and
consolidation
acquisition
permanent
store within the neocortex. However, the lack of consistent findings of temporallylimited retrograde impairments following bilateral hippocampal lesions, and findings
of preserved autobiographical episodic memory across the whole life-span in some
dementia
(e.g. Westmacott et al., 2001) has lent
semantic
patients with advanced
(Moscovitch
& Nadel, 1998). This suggeststhat
trace
theory
the
to
multiple
support
the hippocampal complex is involved in the recovery of autobiographical incidents,
When
their
age.
of
older memories are retrieved, new hippocampallyregardless
mediated traces are created, meaning that older memories are representedby multiple
traces. The extent of the impairment back in time depends on the amount of
hippocampal damage. Based on this theory, people with semantic dementia
should
in
time
their autobiographical recall (Nestor et al, 2002).
show no effects of
Unfortunately,a clear interpretationof the findings is complicatedby
a number of
issues,
including
the heterogeneity of participants, both
methodological
within and
Autobiogaphical memoryandsenseof self 9
between studies.
Participants often differ with respect to the extent of cognitive
impact
lesion,
the
locus
disease,
on
of
which
may
extent
impain-nent,stage of
and
and
Whilst
(Nestor
2002).
temporal
al.,
et
gradient
a
significant
of
absence
or
presence
in
living
for
such
as
changes
processes,
normal age-related
some studies control
Whitboume,
health
(Heidrich,
1998;
independence,
marital status, and
arrangements,
&
(e.
Fromholt
healthy
control groups g.
1998), by comparing patient samples with
(e.
Snowden
et
another
g.
Larsen, 1991), other studies compare one patient group with
al., 1996).
Studies also vary with respect to the tasks employed to study autobiographical
&
Larsen,
1991);
(e.
Fromholt
the
free
including
cue
word
g.
narratives
memory,
involves
1974),
for
Schiffman,
&
Crovitz
1879;
the
(Galton,
which
asking
technique
first discrete memory that comes to mind in response to random words; and
i.
to
fluency,
recall as many memories as possible
people
asking
e.
autobiographical
Nimmo-Smith,
1992;
&
Greene
Baddeley,
Williams,
(Dritschel,
time
et al.,
within a set
1995). All of these techniques have inherent weaknesses;for example, cue words may
fluency
life,
does
for
the
task
be
the
to
the
whilst
not
control
person's
relevant
or not
searchstrategy used.
it
Whilst the useof non-standardised
assessments
makes difficult to comparefindings
betweenstudies,there is also evidencethat different techniquesproduce different
In
healthy
both
memory.
a
sample
of
older
autobiographical
adults,
profiles of
interviewing and using cue-wordselicited the reminiscencebump, but the cue-words
(Fromholt
higher
2003).
Different
of
recent
memories
proportion
a
et
al.,
produced
techniquesmay inherently promote different searchstrategies;for example, asking
in
to
people producememories the contextof a life narrativemay causea chronological
Autobiographicalmemoryand senseof self 10
into
for
to
tap
responses cue-words may
more accessiblerecent
search,whereasasking
memories (Fromholt & Larsen, 1991). The development of the Autobiographical
Memory Interview (AMI, Kopelman, Wilson, & Baddeley, 1990) has resulted in a
from
that
assesses
memories
systematically
across the life span.
measure
well-validated
However, this measure has also been criticised, as autobiographical memory for a
between
life
is
30
early
adulthood
and
as
years
recent
not
period spanning as much
it
difficult
to accurately assesstemporal gradient (Graham & Hodges,
making
assessed,
1997).
There have also been calls for greater consideration to be given to the types of
by
recalled
participants. Tulving (1985,2001,
autobiographical episodic memories
2002) suggestedthat autonoetic consciousness,i. e. the feeling of mentally travelling
back in subjective time and reliving the past, is critical to episodic memory. The
has
been
feeling
this
assessedusing the 'remember/know' paradigm
of
presence
(Gardiner, 1988,2001; Tulving, 1985), whereby participants are required to report on
their experience of remembering. Stimuli are judged as 'remembered' if participants
can re-experience a particular associated episode, and 'known' if there is a feeling of
familiarity, in the absence of a recollection regarding how the information
was
originally acquired.
Piolino et at (2003a)used the 'remember/know' paradigm, in conjunction
with the
AMI, with a patient (AT) with semantic dementia. Whilst AT believed he
was
'remembering'to the sameextentas a healthycontrol group,he struggledto justify his
by
rememberresponses providing contextualinformation for any periodsotherthan the
previous5 years. Piolino et al. (2003b)found superiorpreservationof early memories
in a group with Alzheimer's disease,a reversedtemporal
gradient in a group with
Autobiographicalmemoryand senseof self II
in
frontaldementia,
temporal
the
of
any
clear
gradient
a
group
with
absence
semantic
U-shaped
dementia
(fv-FTD),
in
fronto-temporal
the
and
a
pattern
of
recall
variant
AMI.
the
using
when
control group,
In contrast, their 'remember/know' assessment
failed to produce a temporal gradient for episodic memories in the groups with
Alzheimer's diseaseor fv-FTD, both of whom had greater difficulty retrieving strictly
The
autobiographical
generic
ones.
more
patients
with
compared
memories
episodic
for
12
dementia
the
effect
previous
showed
a
recency
monthsand the
semantic
with
from
detailed
the young adulthood period. The
memories
preservationof specific
fv-FTD,
but
disease
Alzheimer's
or
not those with semantic dementia,
patients with
fewer
'remember'
responsesthan the controls.
significantly
reported
These findings also demonstrate the differences in recall patterns observed by using
different methods. They also suggestthat people with semantic dementia may believe
they are actively remembering personal episodic memories to a greater extent than do
disease
fv-FTD,
Alzheimer's
though they are often unable to justify
or
people with
these judgements beyond the previous 5 years. This indicates that their sense of
is
the
more subjective than objective (Piolino et al, 2003ab), perhaps due
past
reliving
to a disruption in autonoetic consciousness.In contrast, the patients with Alzheimer's
disease or fv-FTD from the Piolino, et al., (2003b) study felt that they were reliving
their memories to a lesser extent than the controls, indicating greater objectivity with
functioning.
to
respect memory
Autobiographicalmemoryand senseofseýfin dementia
Although one's self-conceptand personalityprofile tendsto remain stablein later-life
(Coleman, 1996), impairmentsto autobiographicalmemory in early-stagedementia
for
implications
have
sense of self. Some of the theoretical background to self
may
Autobiographicalmemoryandsenseof self 12
will
be discussed briefly before reviewing the evidence that disturbances of
in
changes
with
senseof self.
memory
are
associated
autobiographical
Self has been described as the unifying context for all experience (Baars, 1997), with
the minimal self (Damasio, 1999) being the immediate experience of one's person, and
the extended self (Neisser, 1988), or autobiographical self (Damasio, 1999), consisting
knowledge,
attitudes,tendencies,beliefs, and narrative
such
as
personal
of elements
memories. In this sensethe autobiographicalself relatesto the self-concept,which
representsthoughtsand attitudesabout the self, and comprisesidentity, self-esteem,
and behaviour(Addis & Tippett, 2004). An integratedlongitudinal self, or senseof
personhood, requires the alignment of one's current state with enduring semantic
knowledge of personal goals, traits, beliefs and values; a process which is thought to be
dependenton autonoetic consciousness(Seeley & Miller, 2005).
Seeley and Miller
(2005) discuss how impairments in minimal self may be
insight,
by
by
and
accommodation of changes by the longitudinal self,
accompanied
family
individual
is still the person they have always
that
the
and
carers
reporting
with
known.
However, there are also reports in the literature of perceived changes in
aspectsof self in associationwith dementia. Hinton and Levoff (1999) found stories of
, loss of identity' from several caregivers; of people with Alzheimer's disease.
Similarly, both Gillies and Johnston (2004) and Orona (1990), found that the
relatives
dementia
talked of loss of identity in conjunction with Alzheimer's
with
of people
disease, based on changes in behaviour, abilities, and interpersonal
relationships. In
individuals
to
with semantic dementia, relatives may perceive changes in the
relation
person's identity based on an increasing cognitive and/or behavioural inflexibility
(Piolino et al., 2003a; Snowden et al., 1996), as previous
self-statements become
Autobiographicalmemoryandsenseof self 13
(Seeley
in
to
the
the
self
relation
world
of
understanding
systems
rigid
and
entrenched
in
behaviour
interpret
and
However,
changes
& Miller, 2005).
although others may
identity,
the
the
in
of
the
view
subjective
person's
abilities as reflecting a change
be
dementia
Although
is
may
people
with
dementia
considered.
seldom
person with
in
interpretations
them
terms
they
of
on
the
place
these
changes,
same
aware of
changesto senseof self are not clear.
factors
to
expressionsof
contribute
likely
is
social
and
It
that many psychological
identity in peoplewith a dementia,such as changesin communicativeabilities and
1992).
However,
&
Harre,
Sabat
1998;
Harre,
(e.
understanding
interactions
g.
social
impairment
be
by
it
that
cognitive
affected
would
self asa cognitivestructuresuggests
infortnation
(Clare,
applying
due to difficulties with processing,storing,retrieving and
2004).
Addis and Tippett (2004) examined the impact of impairments in
identity,
comparing
a
sample
of people with
of
aspects
on
memory
autobiographical
Alzheimer's diseasewith age-matchedcontrols. The group with Alzheimer's disease
to
impaired
to
personal semantic and personal
with
respect
controls
relative
were
incident memory, with significantly poorer recall of recent adulthood and early
from
but
those
with
compared
childhood,
no
adulthoodpersonalsemanticmemories,
differencein recall for personalincident memoriesbetweenthe different time periods.
Relative to the control group, they evidencedsignificantly less strengthof identity;
identity.
less
identity;
However,
did
differ
they
and
positive
of
not
reducedquality
from the control group with respectto complexity of identity. Significant positive
between
identity
found
strength
of
and aspectsof autobiographical
relationshipswere
This
fits
for
bump
the
and
childhood.
adulthood
with
early
reminiscence
memory
hypothesisof Fitzgerald(1988,1996,1999), which suggeststhat memoriesfrom this
identity.
linked
Significant
with
closely
are
negativerelationshipswere found
period
Autobiographicalmemoryandsenseof self 14
between quality, or 'definiteness' of identity and aspects of childhood and early
(2004)
Tippett
Addis
this
that
may
suggest
and
memory.
adulthood autobiographical
knowledge,
impairment
which provide
of
personal
of abstract summaries
reflect an
information about the self in a variety of siutations, with decisions about identity
instead being basedon a single relevant event, which forces 'all or none' responses.
Conclusionsand implications
between
from
finding
the
this
The most striking
relationship
review of
in
is
large
dementia,
the
early-stage
of
self
autobiographicalmemory and sense
discrepancybetweenthe importanceattributedto this relationshipfrom a theoretical
is
It
limited
conducted.
the
research
unclearwhy
empirical
of
amount
perspectiveand
difficulties
due
be
it
to
is
though
and
methodological
conceptual
this so,
may
relating
(Brewer,
1986)
(Byrne,
1996).
The
lack
both
and
self
to
memory
autobiographical
of
definitions
be
investigated,
the
to
to
of
constructs
and the
consensuswith regard
in
difficult
be
this
to
to
a
area
which
conduct research.
make
utilised,
methods
However, even this does not seemto account for the paucity of research,which perhaps
better reflects the operation of assumptionsregarding the existence of the relationship.
Some studiesthat have examinedchangesin senseof self in dementia suggestan
in
impairment
directly
investigating
autobiographical
memory,
without
underlying
(e.
is
1998).
Conversely,
Mills,
the
this
case
g.
or
not
empirical studiesthat
whether
have examined autobiographical memory impairment may include qualitative
backgroundinformationthat implies a possiblechangein senseof self (e.g. Piolino et
but
is
1996),
Snowden
investigated
2003a;
further. Reportsof
this
al.,
et
not
usually
al,
based
identity
in
are often
on carer perceptions(Gillies & Johnston,2004;
changes
Orona, 1990), whereby, identity change is inferred from changes in behaviour,
Autobiographicalmemoryand senseof self 15
personality, or abilities. The subjective view of the person with dementia is rarely
sought.
Understandingthe views of the person with dementia, with respect to their identity, has
importantclinical and researchimplications. For example,Sabatand Collins (1999)
is
how
in
dementia,
it
important
is
to
that
self
managed
consider
as this may
suggest
impact on manifestationsof selthoodand, therefore,how self is measuredin studies
looking at impairments in dementia. Both Clare (2003) and Pearce, Clare, & Pistrang
(2002) suggestthat people with dementia differ in terms of their strategies for coping
with threats to self. VVhilst some attempt to maintain an existing senseof self, perhaps
by viewing their difficulties as being restricted to certain areas of ability or activities,
incorporate
in
functioning.
to
their
of
self
changes
sense
adjust
others
The balance
between self-protective responsesand integrative responses is influenced by partners'
influences.
wider
socio-political
and
responses
coping
Other researchersalso suggestthe importance of interpersonal relationships for identity
in
dementia.
Gillies and Johnston (2004) suggest that the
or
change
maintenance
dementia
by
is
holding on to certainty about self,
greatestchallenge presented
with loss
beginning
when the responses of others are inconsistent with one's own
of certainty
(1997)
Kitwood
also proposesthat dementiamainly affects the adaptive
self
of
view
learned
consists
of
ways of respondingto others"demands,ratherthan the
which
self,
MacRae
(2002)
detailed
how family caregivers use strategies
self.
experiential
designedto preservewhatever identity remains. Use of these strategies
may be
by
desire
the
to protectthe person,both from their own evaluations their
motivated
of
from
the evaluationsof others; as well as protecting the family from
situation, and
Strategies
can include discrediting potentially embarrassingor
stigmatisation.
Autobiographicalmemoryand senseof self 16
stigmatising
information,
medicalising
inappropriate
behaviour,
fostering
independence,and perceiving selectively. Overall, it would seem that identity change,
and maintenance,is usually consideredin social rather than cognitive terms.
The hypothesisedrelationship between autobiographical memory and self is utilised in
in
dementia,
interventions
with one of the most popular being
some psychosocial
&
Davies,
2005).
Spector,
Jones,
Orrell,
(Woods,
Reminiscenceis the
reminiscence
process of reviewing autobiographical memories that occurs spontaneously at all ages,
especially in older adulthood. When used therapeutically it is thought to confirm and
identity,
and uses past accomplishments to support a sense
a
sense
of
personal
enhance
2003).
(Haight
et
al.,
of competency
Despite a paucity of suitable randomised
controlled trials, there are promising indications in terms of cognitive, mood, and
behavioural outcomes (Woods et al., 2005). Life review is a more structured form
of
reminiscence that requires people to reminisce over their entire life, and evaluate and
(Haight
2003).
life
A
troubling
et
al.,
events
storybook is created that provides
reframe
history
disease
the
self
and
personal
as
of
sense
a
progresses. 'Ibis can also be used to
communicate the self to others. For both reminiscence and life review, the benefits
inclusion
by
family
be
the
the
of
enhanced
caregiver (Haight et al., 2003).
may
An increasingseverityof Alzheimer's diseasehas been associatedwith an increasing
inability to provide an integratedpersonalhistory (Fromholt & Larsen, 1991). This
it
be
important
that
to conduct life review work in the early stagesof
may
suggests
Alzheimer's disease,so that life's unfinished businesscan be resolved before the
is
longer
cognitively able to engagewith the process(Haight et al., 2003).
no
person
Schechtmair(1994,1996) highlighted the importanceof condensing
autobiographical
from
life
certain
periodsinto narrativescontainingthe essentialfeatures,so
memories
Autobiographicalmemoryand senseof self 17
that the individual appreciates autobiographical memories as part of an integrated
it
find
dementia
difficult
integrate
People
to
may
more
semantic
with
remote
whole.
help
but
life
in
into
their
the early-stages
could
such
work
people
narrative,
memories
dementia
to retain themes rather than restricted concepts of self.
of semantic
In conclusion,with respectto the relationshipbetweenautobiographicalmemory and
findings
from
it
is
the
to
preliminary
of one study. The
not possible generalise
self,
Tippett
(2004)
Addis
requirereplication,whilst the contributionof other
and
resultsof
factors
be
to
and
social
needs
examined. Findings of impaired
psychological
relevant
dementia
difficult
in
interpret,
to
are
as they are partly
autobiographicalmemory
dependenton the methodologyused,whilst identity, which is so uniquely personal,is
in
by
from
Research
inferred
benefit
the
from the
carers.
reports
area
would
often
definitions
concepts,
and research methodologies. Although
of
standardisation
dementiahasa neurologicalbasis,the literaturesuggeststhat the managementof many
loss
identity,
heavily
its
dependent
of
especially
are
symptoms,
of
on social
identity
This
has
been viewed predominantly
explain
may
why
change
relationships.
from a socialratherthana cognitiveperspectivewithin the researchliterature.
Autobiographicalmemoryand senseof self 18
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APPENDIX I
NOTES FOR CONTRIBUTORS
3rdparty copyright material excluded from digitised thesis.
Pleaserefer to the original text to see this material.
SECTION THREE - RESEARCH PAPER
CONTENTS
Page
Title page
..................................................................
Abstract
.....................................................................
Introduction
...............................................................
3
Method
.....................................................................
Results
......................................................................
14
Discussion
..................................................................
20
References
..................................................................
25
Appendix I
Tables and figure identified in the text
Appendix 2
Notes for contributors
Autobiographicalmemory, identity andawareness I
Running head: autobiographical memory, identity, and awareness
Relationshipsbetweenautobiographicalmemory,identity,
in
and awareness early-stage dementia
Emma C. Naylor*, University of Wales Bangor
Linda Clare Phl), University of Wales Bangor
North Wales Clinical PsychologyProgramme,School
*Addressfor correspondence:
University
Wales
Bangor, Bangor, Gwynedd, LL57 2AS, United
Psychology,
of
of
Kingdom.Telephone:+441248382205,Fax: +441248383718,
E-mail: pspe32@bangor.
ac.uk
Autobiographical memory, identity and awareness 2
Relationshipsbetweenautobiographicalmemory, identity, and awarenessin earlydementia.
stage
Abstract
Impaired awareness of some aspect of functioning, or situation, is an important
The
its
due
dementia
in
to
variables.
with
several
clinical
relationship
care,
concept
literature suggeststhat awarenessis associated with both self and autobiographical
these
This
three
the
of
variables, within a
relationships
examined
study
memory.
diagnoses
Alzheimer's
early-stage
of
sample of people with
disease, vascular
dementia, and mixed (Alzheimer's and vascular) dementia. The 30 participants,
Autobiographical
local
the
administered
each
clinic,
were
memory
a
recruited via
Memory Interview, Tennessee Self-Concept Scale, Second Edition, and Memory
Awareness Rating Scale. Partial correlations, controlling for general cognitive ability,
revealed that: greater recall of early adulthood personal semantic and incident
definite
identity,
more
sense
with
of
greater recall of mid.
memories was associated
life incidents was associated with less definite identity but greater awareness, and
less
definite
identity.
was
associated
with
awareness
greater
The findings were
interpreted with referenceto cognitive and biopsychosocial explanations of awareness
in dementia. Experiences of memory failure in the earliest stage of the disease may
information
in
the
updating of
regarding memory ability in a Personal Data
result
Base. This supports awareness, but reduces certainty regarding identity, as these
into
integrated
senseof self.
changesare
Autobiographical memory, identity and awareness 3
Relationshipsbetweenautobiographicalmemory, identity, and awarenessin early-stage
dementia.
INTRODUCTION
Impaired awareness of some aspect of functioning or current situation is a common
feature in dementia; and is an important concept in dementia care due to its relationship
higher
levels
For
be
to
example,
of
awareness
variables.
seem
clinical
several
with
but
better
levels
depression,
higher
following
to
of
outcomes
related
cognitive
dementia
(Clare
2004);
in
lower
levels of stress,
the
et
al.,
person
with
and
rehabilitation,
burden, and depressionin caregivers (e.g. De Bettignies et al., 1990). Numerous factors
have been identified as influencing awareness, and have been drawn together in a
framework
biopsychosocial
(Clare,
2004).
This framework highlights the
comprehensive
importance of the self as the context within which awareness of one's functioning and
However,
is
expressed.
and
sense of self may alter in early-stage
experienced
situation
dementia (Orona, 1990), possibly underpinned by changes in autobiographical memory,
bi-directional
is
to
theorised
share
a
relationship (Conway & Pleydellwith which self
Pearce, 2000). Autobiographical
memory
is
also represented in
Morris
and
Hannesdottir's(2004)model of awarenessin Alzheimer's disease,as the necessarystore
instances
failure
of
success
or
on tasks. Thus, the constructsof self
of eventscontaining
be
to
memory
seem
closely related,both to eachother and to level
and autobiographical
This
first
the
study
represents
attempt to examine these relationships
of awareness.
in
the early stages of dementia. The findings will be
of
people
a
sample
within
from
a cognitive perspective,but also in relation to relevant
consideredprimarily
Autobiographicalmemory,identity andawareness 4
increasing
the
aim
of
our understanding of
with
psychological and social processes,
dementia.
the
the
with
person
experiential world of
awarenessand
Clare's (2004) biopsychosocial framework for understanding awarenesssuggeststhat the
degree
the
be
to
dementia
threat
of
awareness
representing
with
self;
a
as
viewed
onset of
in
biological,
interaction
and
social
processes
response
the
psychological
of
outcome of
difficulties
in
in
dementia
Biological
underpin
many areas of
threat.
changes
to that
in
how
have
changes awarenessare associated
examined
cognition, and numerous studies
functions
impairments,
to
memory
relating
executive
and
particularly
with cognitive
(e.g. Mangone et al., 1991; Michon et al., 1994). One aspect of cognition, which Morris
is
important
is
impaired
(2004)
to
in
Hannesdottir
awareness,
and
often
propose
and
dementia, is autobiographical memory, the store of personal semantic and personal
incident memories (Baddeley, 1992). Researchhas found a disproportionate impairment
in
to
autobiographical
acquired,
memories
remotely
association with
of recent, relative
Alzheimer's disease(Graham & Hodges, 1997; Greene & Hodges, 1996; Greene et al.,
1995; Kopelman, 1989), and a reversal of this temporal gradient in people with semantic
dementia (Graham & Hodges, 1997; Nestor et al., 2002; Snowden et al., 1996).
Conway and Pleydell-Pearce(2000) posit the existence of a dynamic, bi-directional
between
autobiographical memory and self, with autobiographical
relationship
knowledgeencodedthrough the goal structureof the working self, which then plays a
in
during
memories
specific
autobiographicalremembering. Addis and
role constructing
Tippett (2004) investigatedthe impact of changes in autobiographicalmemory on
Autobiographical memory, identity and awareness
identity, in people with early to moderate stage Alzheimer's disease. Both personal
incident
impaired
in
those with
memory
were
and
personal
semantic memory
Alzheimer's disease, relative to a healthy control group.
Identity was less definite,
in
less
dimensions,
the group with Alzheimer's disease.
negative
and
was
more
contained
Markova (1997) seemsto suggestthat the highestlevel of awarenessis dependenton an
individual
the
the
self,
as
current
must not only
accurate mental representation of
impairment,
but
its
the
also
or
understand
symptom
of
a
presence
meaning and
perceive
the likely impact on self-concept. Thus, autobiographical memory could influence
its
directly,
through
relationship with the self.
or
awareness
Although changes in cognitive functioning may directly underpin changes in aspects of
influenced
by
psychological
processes
awareness,
and
self
personality, coping style,
beliefs, and prior experiences,are also likely to be relevant. For example, the tendency to
information
focus
that confirms existing self-perceptions, and tailor
on
selectively
behaviour in order to produce outcomes that are congruent with these expectations, is
a
bias that operates with greater strength and persistence when the self-concept is
under
threat, such as, in relation to the onset of illness (Taylor, 1983; Taylor & Brown, 1988).
Clare (2003) suggestedthat strategies for coping with early-stage Alzheimerlps disease
fall on a continuum from self-maintaining to self-adjusting responses. %ilst
self-
maintaining responsesreflect a tendency to preserve a prior or existing senseof self, selfadjusting responsesreflect a process of ad usting or developing senseof self in line With
the effects of the disease. Self-maintaining responses could be perceived by
others as
manifestations of unawareness,whereas in some cases they might reflect a protective
Autobiographical memory, identity and awareness
psychological process, such that the assumption of unawareness is inaccurate.
Unfortunately, these inaccurate perceptions on the part of significant others are often
intervention,
diagnosis,
to
and ongoing care and support. They may undermine
relevant
the social roles and relationships that provide the evidence needed to support ideas about
the self (Cheston & Bender, 1999), and encourage the emergence of a discord between
labels
identity,
to
malfunction overriding all other
relating
with
perceived
and
presented
2004).
&
Johnston,
identity
labels
(Gilles
possible
Although Clare's (2004) framework encourages the consideration of a wide variety of
factors when assessingawareness,it does not provide a mechanism by which they may
be integrated. However, the recently developed Cognitive Awareness Model (CAM;
Morris & Hannesdottir, 2004) may offer a means of understanding the interrelationships
between autobiographical memory, identity and awareness. The CAM represents the
development of earlier work by Schacter (1989) and Agnew and Morris (1998), and
is
based on the perception of success or failure
that
of
abilities
appraisal
posits
on
behavioural
Information
tasks.
or
regarding the outcome of tasks can be stored
Cognitive
in either short-term or long-term episodic memory, but also consolidated in a Personal
Data Base (PDB) within semantic memory. The PDB is updated when comparator
mechanisms within a central executive system detect a mismatch between the
information held in the PDB and current experiences of success or failure. Conscious
is
failure
is
generated
when
of
a
signal
awareness
sent to a Metacognitive Awareness
System (MAS). Awareness problems can result from an error in updating the PDB,
as an
impairment of memory prevents the creation of a permanent record relating to
evaluation
Autobiographicalmemory,identity andawareness 7
of self-ability.
Alternatively, a breakdown in the executive system or comparator
incoming
between
information
detection
the
of
a
mismatch
and
mechanisms can prevent
the PDB.
Finally, a global impairment in the MAS can result in information being
detected and stored but not reaching consciousness(Agnew & Morris, 1998).
Within this modelautobiographicalmemory is representedin both episodicmemory and
in relation to the PDB. Although the PDB is primarily viewed as a store of information
by
it
is
influenced
inputs,
impairment,
to
social
and
cultural
ability
or
and could
relating
information.
for
more general personal
also contain memory
In this sense the PDB
be
similar to the personalsemanticcomponentof autobiographicalmemory, and
would
for
identity.
knowledge
Tle
necessary
self-relevant
central executive
would contain
its
comparatormechanismsmonitor performance,use this information to
and
system
behaviour
for
future
the
plans,
and
and
also
guide
search
relevantinformation from
adjust
it
is
by
In
the
to
PDB.
this
role
similar
played
the
sense
working self proposedby
(2000),with the whole model operatingwithin the general
ConwayandPleydell-Pearce's
contextof the self
In summary,the literaturesuggestsassociationsbetweenautobiographicalmemory, self
In
bi-directional,
these
many
cases
relationships
awareness.
are
and
with self being
involved in the encodingandreconstructionof autobiographicalmemories,but also being
dependenton autobiographicalmemory as a store of self-relevant information. Self
provides the context within which awarenessoperates,but accurateappraisalof one's
for
formation
is
the
of realistic goals,which the self utilises to guide
abilities necessary
Autobiographical memory, identity and awareness 8
behaviour.
This study will investigate the relationships between autobiographical
identity
as an aspect of self, and awareness,within a single sample of people
memory,
definition
dementia,
'an
of
awareness
an
operational
as
using
accurate
with early-stage
appraisal of everyday memory performance'.
The following specifichypotheseswill be investigated:
1.
Greater recall of autobiographical memories will be associated with a stronger
senseof identity.
2.
Greater recall of autobiographical memories will be associated with a greater
level of awarenessof everyday memory functioning.
3.
Greater strength of identity will be associatedwith a greater level of awarenessof
functioning.
everyday memory
METHOD
Design
This study aimed to explore the relationships between autobiographical memory, identity
functioning,
using a correlational design, within a sample of
of
memory
awareness
and
dementia.
Ethical
early-stage
with
approval was gained from the ethics
participants
School
Psychology,
University
the
of
of
of Wales Bangor, and the local
committee
COREC committee.
Autobiographical memory, identity and awareness 9
Participants
Potential participants were identified by reviewing the clinical records of a memory clinic
in North Wales; in consultationwith membersof staff. Thirty-six individuals were
30
were recruited and provided written consent; giving a response rate of
approached,
83%; and 29 fully completedall the assessments.The 30 participantsincluded 6 males
SD=6.18).
(M=78.20,
Twenty
91
64
between
females
24
the
participants
and
of
ages
and
had a diagnosisof Alzheimer's disease(AD), 8 had a diagnosis of mixed (AD and
dementia,
diagnosis
had
based
2
dementia,
Diagnostic
the
vascular
a
of
and
on
vascular)
Fourth
Edition
Mental
Disorders
(DSM-IV,
Manual
American
Statistical
of
and
PsychiatricAssociation,1994). Twelve participantslived alone in their own home, 16
lived with a spouse,and2 lived with anotherfamily member. Participantswere required
to be in early stagesof the diseaseprocess,as defined by a scoreof 18 and over on the
Mini-Mental
State Examination (MMSE, Folstein et al., 1975) and/or a Clinical
Dementia Rating Scale (CDR; Hughes et al., 1982) score of 0.5 or 1. Only individuals
that
they
suggested
would score within this range were approached;
notes
clinical
whose
MMSE
the
administered to every participant prior to the main measuresin order to
with
One
difficulties
but relatively
score.
participant
with
perceptual
a
contemporaneous
gain
having
functioning,
MMSE
daily
an
score of 16 but rated by another
autonomous
having
CDR
two
as
a
previously,
score of 1, was included. MMSE
months
researcher,
from
16
29
22.40,
(M
SD
3.61).
Participants
to
=
=
ranged
scores
were also requiredto
be fluent in English. Individuals with concurrentseveremental health problemswere
Each
participantwas askedwhetherthey would like to have a family member
excluded.
friend
present,and also whetherthey consentedfor someonewho knew them well to
or
Autobiographical memory, identity and awareness 10
be approached to complete an informant measure. A total of 26 informants became
involved with the study: 13 spouses, I sister, 8 daughters, 2 sons, and 2 other family
members.
Measures
Participants were assessedon standardised.measures of autobiographical memory,
identity, andawareness
of memoryfunctioning.
The AutobiographicalMemory Interview (AMI; Kopelman et al., 1990) is a structured
interview that assessespersonal semantic and personal incident (episodic) memory over
three lifetime periods: childhood, early adulthood and recent life.
Semantic questions
friends,
to
schools
attended,
addresses,
names
of
of
names
and other factual
relate
information. The maximum possible semantic score for each lifetime period is 21.
Incidents are elicited by asking participants to recall a particular event, for example,
grecall an incident occurring while at secondary school', with prompts such as 'involving
friend'
if
'involving
is
the
permissible
teacher',
a
or
person
not initially able to produce
a
is
incident
depending
Each
three
scored
out
of
on specificity of time and
a memory.
for
9
possible
score
of
a
maximum
each period. The measure yields a total
place, with
incident
total
score
and
a
memory score, along with semantic and
memory
semantic
incident scoresfor each of the three lifetime periods.
The AMI has good inter-raterreliability (0.83-0.86),and scorescorrelatedsignificantly
(0.28,
tests
memory
of remote
p<0.05-0.68, P<0.001) in a Samplecomprising
with
Autobiographical memory, identity and awareness II
healthy controls and people with amnesic syndrome.
The measure is also able to
differentiate between healthy controls and people with amnesic syndrome, with controls
both
(p<0.001)
higher
on
personal semantic and personal
scores
obtaining significantly
incident components. However, the AMI has been criticised for failing to assessthe
it
life,
difficult
between
to accuratelyassess
making
recent
early adulthoodand
period
temporal gradient of recall (e.g. Graham & Hodges, 1997). Thus, a 'middle to late
Services
Development
Dementia
developed
Centre,
University
the
at
section,
adulthood'
Woods,
2006),
(Jones
&
for
Bangor
Wales
communication,
personal
specifically
of
use
diagnosis,
included.
dementia
have
was
a
with people who
On this section it was
15,
incident
to
of
and
semantic
score
a
maximum
maximum
a
obtain
score of 6.
possible
Semantic and incident scoresfrom this newly added period were included in the analyses.
An overall semantic score (Total Semantic New) and an overall incident score (Total
Incident New) were created by adding the mid-life scores to the original total semantic
incident
scores.
and
As none of the participants were seen in a hospital setting, questions from part 7, which
institution',
hospital
'present
to
or
were re-worded to ask about the home
relates
hospital,
by
Kopelman
to
visits
as
advised
and
recent
environment
et al. (1990).
The data was used in its raw form for correlational analyses,but was converted to
for
percentages the purposesof examining the temporal gradient, as the new mid-life
from
differed
in
its
the
other
sections
possiblemaximum score.
section
Autobiographical memory, identity and awareness 12
Kopelman and colleagues (1990) report that confabulation is not a major issue when
instructions
for
AMI,
the
administeringthe scale do not require that
and
administering
for
accuracy.
memories are checked
The TennesseeSelf-ConceptScale: SecondEdition (TSCS-II; Fitts & Warren, 1996)
for
82
statements, example,'I am an attractive person'. Statementsare rated
consistsof
for self-descriptivenesson the 5-point scale: always false, mostly false, partly false and
partly true, mostly true, or always true.
Scores can be calculated for: overall self.
concept; the components of identity, satisfaction and behaviour; and personal, family,
forin,
domains.
A
comprising the first 20 items, allows
short
social, moral and physical
for the calculation of an overall self-concept score only. Participants were provided with
a printed copy of the response scale, whilst the self-description statements were read
Responses
were recorded on the answer sheet by the researcher. Item number 51
aloud.
from
'I treat my parents as well as I should' to 'I treat my family as
was reworded
well as
I should', since the parents of most participants were deceased.
The TSCS-II scales have good internal consistency (median 80), and test-retest
.
has
been
(median
76).
TSCS-II
found
total
to
score
reliability
correlatewith a variety of
.
including
to
the Self EsteemInventory (.75; Coopersmith,
self-concept,
measuresrelating
1981); and has evidenceddiscriminantvalidity when psychiatric patientsand offenders
havebeencomparedto healthycontrol participants.
Autobiographical memory, identity and awareness 13
TSCS-Il identity score; and TSCS-11response distribution score were used as measures
is
'always
distribution
the
true'
identity.
The
measure
of
a
number
of
score
response
of
is
false'
the
'always
a
measure
of
certainty
about
and
way one sees
made,
responses
and
Identity
'definite
highly
hereafter
be
It
to
responses'.
correlated
as
referred
will
oneselfi
(r = 886, p<0.001) with total self-concept score, of which it was a subscale. Thus, to
.
increase power in the analyses,the total self-concept score was not utilised.
The Memory Awareness Rating Scale (MARS; Clare et al, 2002) is a quantitative
based
functioning,
Rivermead
the
the
upon
subtests
of
memory
of
awareness
of
measure
Behavioural Memory Test-SecondEdition (RBMT-II; Wilson, Cockburn & Baddeley,
2003). The subtestsof the RBMT-Il are analoguesof everyday memory tasks, such as
date.
The
items
MARS
today's
and
a
route,
a
name,
ask about situations
remembering
in
incorporated
the RBMT-II. For example,the MARS item
to
those
that are equivalent
'You meet up with a group of people. Some of them you've met before, others you
haven't. You needto recognisewhich onesyou've met before' relatesto the RBMT-11
face recognitiontask, in which the personis shown 5 facesand later askedto pick those
faces out of a larger set, which includes some distractor items. The MARS Memory
Functioning Scale (MARS-MFS) comparesan individual's ratings of how they think
their memorywould function in thesevarious everydaysituations,with the ratings of an
informant, suchas a spouse. A positive discrepancyscore indicatesthat the individual
highly
does
her
informant;
his
than
the
more
memory
or
rates
a negativescoreindicates
the opposite. The Memory PerformanceScale(MARS-MPS) comparesan individual's
immediately
task
their
performance,
after encounteringthe various RBMT-11
ratings of
Autobiographical memory, identity and awareness 14
discrepancy
indicates
A
their
task
that
positive
score
actual
performance.
subtests,with
the individual's rating of perforniance exceeds his or her actual performance score; a
his
her
indicates
that
the
underestimated
or
person
performance.
negative score
Ile threecomponentscalesof the MARS havegoodinternal consistency(.93,96). Testdementia
(.
91-.
for
in
97)
high
the
the
the
with
person
case
of
and
was
retestreliability
informants(.76-.89). In termsof validity, participantself-ratingscorrelatedsignificantly
(P-"-0.05;
Questionnaire
Kapur
&
Symptoms
Pearson,
Memory
1983).
the
with
Procedure
Participants were offered the choice of being seen at home or at the University of Wales
Bangor; all 30 chose to be seen at home. Each assessmentbegan with the gathering of
background information, followed by the measures detailed above. Participants were
breaks
to
take
when necessary,and were offered the option of completing the
encouraged
testing in more than one session. Fourteen individuals chose to complete the assessments
during a secondvisit.
RESULTS
'Me main analysis focused on examining the relationships between the conceptsof
(Autobiographical
Memory
Interview; AMI),
memory
autobiographical
identity
(TennesseeSelf-ConceptScale - SecondEdition; TSCS-11),and awareness(Memory
Awareness Rating Scale; MARS).
All participants completed the AMI
and the
MARS.
Four
did
the
of
versions
people
participant
not have anyoneavailable to them
informant
the
complete
could
version of the MARS; thus, the MFS-D scorecould
who
Autobiographical memory, identity and awareness 15
form
One
individuals.
for
the
be
these
completed
of
only
short
participant
calculated
not
There
the
the
TSCS-II,
required
subscale
scores.
was
of
the
which precluded calculation
less than 5% missing data in total; where data was missing, cases were excluded on a
basis.
pair-wise
indicated
Kolmogorov-Smimov
test
that data for all
Analysis using the one-sample
(z--.
420-1.275,
for
Statistical
p>1=0.05).
analysis
parametric
were
suitable
variables
differences,
independent
t-tests
to
explore
subgroups
out
using
carried
analysis was
impact
the
to
assess
of cognitive ability on
Pearson'sproduct-momentcorrelations
Variance
(ANOVA)
Analysis
to
the
temporal
of
assess
repeated-measures
performance,
investigate
to
and
partial
correlations
recall,
memory
autobiographical
gradient of
identity
between
memory,
autobiographical
and awareness.
relationships
Overview of scoreson the measuresof autobiographicalmemory,identity and awareness.
Table I abouthere
Mean scores on measuresof autobiographicalmemory, identity and awarenessare
In
1.
in
Table
to
order
verify whether the performanceof the samplewas
presented
from
the
temporal
for
both
to
those
other
studies,
gradients
personalsemantic
comparable
incident
Figure
illustrates
I
memory
were
examined.
the mean percentage
and personal
incident
both
the
personal
semantic
and
personal
aspectsof the AMI, for each
recall on
ANOVAs revealed significant main effects of time
time period. Repeated-measures
Autobiographical memory, identity and awareness 16
based
(F=7.185,
Greenhousefor
both
the
p<0.05),
on
memory
personalsemantic
period
Geisser correction, and personal incident memory (F=20.513, p<0.001), i. e. there was a
in
different
lifetime
difference
the
memories
across
of
autobiographical
recall
significant
follow
in
The
those
the
pattern
same
as
other published
obtained
gradients
periods.
i.
1991),
&
Larsen,
the
Fromholt
(e,
greatest number of memories recalled
e.
studies g.
in
linear
declining
fashion
time.
time
a
to
the
scores
over
with
periods,
earliest
related
Using the new sectionappendedto the AMI, the number of memoriesrecalled for the
for
life
lower
than
the
recent
period.
slightly
was
period
mid-life
Figure I about here
Influence of Dementia Type.
Despite all but 2 participants having some Alzheimer's component to their diagnosis, it
interest
to ascertain whether the presence of vascular factors impacted on
was of
divided
The
was
sample
according to type of dementia, with 20 in the
performance.
Alzheimer's disease group and 10 in the 'other dementia' (mixed and vascular) group,
detailed
in
for
Table
2.
the
sub-group
each
scores
with
Table 2 abouthere
The groups differed significantly with respectto the AMI recent life period for both
incident
Alzheimer's
the
memories,
with
and
semantic
group having significantly better
Autobiographical memory, identity and awareness 17
between
MMSE
difference
The
the
two
to
in
both
groups
with
respect
score
cases.
recall
having
higher
Alzheimer's
the
group
a
mean score,
with
almost reachedsignificance;
indicating a higher level of cognitive functioning, perhapsunderpinning the observed
differencebetweenthe groupson AMI scores.
impact of cognitive functioning on obtained scores.
The impact of cognitive ability on participants' scoreswas explored further by correlating
MMSE score, with AMI, TSCS-11definite responses and identity scores, and the two
MARS discrepancy scores. It was hypothesised that a higher level of cognitive ability
TSCS-11,
lower
AMI
discrepancy
in
higher
the
and
and
on
scores
scores on
would result
the MARS.
Table 3 abouthere
Tabla 3 shows that MMSE score was significantly correlated with each of the AMI
the
the
exception
of
childhood period semantic score. In each case,
with
scores,
semantic
indicated
higher
level
functioning
that
a
of
cognitive
relationships
positive
was associated
information.
autobiographical
of
semantic
recall
with greater
The significant negative
MMSE
between
MARS-MPS
discrepancy
score
and
correlation
score indicated that a
higher level of general cognitive functioning was associated with less of a discrepancy
between performance on the RBMT-11 and self-rating of perfonnance.
Once the
Autobiographical memory, identity and awareness 18
Bonferroni correction was applied, in order to control for multiple testing, only the
life
between
MMSE
scoreandrecent semanticscoreremainedsignificant.
association
RelationshipsbetweenAutobiographicalMemory, Identity, andAwareness.
Partial correlationswere usedto investigatethe relationshipsbetweenautobiographical
for
by
identity
cognitive
general
ability
controlling
as
awareness,
assessed
and
memory,
MMSE scores.
Relationship betweenAutobiographical Memory -Td Identity.
Table4 abouthere
Table 4 shows that significant positive partial correlations were obtained between the
TSCS-II definite response score and early adulthood semantic and incident memories,
i.
definite
ability
was
controlled,
cognitive
e.
a
when
more
sense of identity was
even
associated with greater recall of early adulthood memories.
Significant negative
found
between
for
incidents
memory
were
mid-life
relationships
and both aspects of
identity, i. e. greater recall of memories from this period was associated with less positive
identity.
definite
less
and
However, when controlling for multiple testing
using a
Bonferroni corrected p value of 0.002, these relationships ceasedto be significant.
Relationship between Autobiographical Memory and Awareness
Partial correlationswere used to assessthe relationships between both the MARS
functioning
discrepancy
(MARS-MFS-D) score and MARS
memory
memory
Autobiographical memory, identity and awareness 19
performance discrepancy (MARS-MPS-D) score, and the various AMI scores, i. e. total
incident
incident
total
total
total
new
and
semantic
scores,
new scores,and
semanticand
the semantic and incident scores for the childhood, early adulthood, mid-life and recent
life periods, controlling for current level of cognitive functioning.
Table 5 abouthere
Table 5 shows that only the negative relationship between MARS-MFS-D and AMI midlife personal incident memory was significant, and remained so after the Bonferroni
individual's
between
discrepancy
i.
lower
an
perception of their memory
correction, e. a
functioning and the perception of an informant, indicating greater awareness, was
incidents
from
the mid-life period.
of
personal
associatedwith greater recall
Relationship between Identity and Awareness.
Partial correlations, controlling for general cognitive ability, were used to explore the
identity
between
Table
6 presents the significant positive
and
awareness.
relationships
between
found
MARS-MFS-D
both
the
score
the TSCS-11 Identity
and
relationships
definite
This
TSCS-II
responses
score.
and
suggests that a greater discrepancy
score,.
less
functioning
therefore
accurate
appraisal
of
and
score,
on the part of the individual
is
dementia,
associatedwith more positive and more definite senseof identity.
with
Table6 abouthere
Autobiographical memory, identity and awareness 20
DISCUSSION
This study investigated the relationships between autobiographical memory, identity and
dementia.
The
temporal
in
evidenced
sample
similar
early-stage
with
people
awareness
found
in
&
(e.
Addis
to
those
some
other
studies
g.
gradients of autobiographical memory
from
life
better
1989),
Kopelman,
2004;
earlier
periods.
Tippett,
recall
with
Exploration of the hypothesis that greater recall of autobiographical memories would be
identity,
between
dcfinite
a
revealed
positive
association
sense
of
more
associated with a
better recall of early adulthood semantic and incident memories and a more definite sense
for
Bonferroni
to
but
identity,
corrections
this was significant prior
multiple testing
of
finding
(2004)
Tippett's
is
Addis
This
to
of a negative relationship
and
contrary
only.
between autobiographical fluency for early adulthood memories and definite sense of
identity in people with Alzheimer's disease. However, their finding was at odds with
literature,
the
initial
which suggests that autobiographical
with
their
expectations, and
during
the
to
adulthood
period
early
are
encoded
relating
a time of intense selfmemories
identity
the
construction
and
underpin
of
a
stable
activity,
and life narrative
orientated
(Fitzgerald, 1988,1996,1999). Thus, it would be expected that impairment of memories
from this period would have the greatestnegative impact on senseof self and identity.
Findings of the greaterrecall of mid-life incidents relating to less definite identity are
interpret,
difficult
from
to
this period are not usually
particularly
memories
as
more
by
Autobiographical
Memory
the
Interview (Kopelman ct al.,
assessed
specifically
1990). It could be that memoriesfrom this period containthe first instancesof failuresin
Autobiographical memory, identity and awareness 21
in
Individuals
the
changes their memory functioning, but in the
may register
memory.
it
be
difficult
diagnosis
to attribute meaning (Markova, 1997) creating a
may
absence of a
sense of uncertainty in the self.
The secondhypothesis,i.e. that greaterrecall of autobiographicalmemorieswould be
level
functioning,
of
everyday
memory
of
awareness
associatedwith a greater
was
between
in
the
terms
awarenessand mid-life personal
of
relationship
supportedonly
incident memories. The lack of any other significant relationshipswas surprising given
the importanceplacedon autobiographicalmemory in Morris and Hannesdottir's(2004)
it
is
information
Perhaps
the
circumscribed
only
regardingability,
model of awareness.
is
PDB,
in
important,
the
that
to
the
update
content
of
order
rather than the
extracted
by
the AMI. The mid-life period may
memories
autobiographical
sampled
general
more
differ if it doesindeedrelateto a time of changein memory functioning. For example,
Barsalou, (1988) and Conway (1992) have suggestedthat autobiographicalmemories
be
failure
in goal attainment. Thus, the
as
records
of
primarily
success
viewed
or
could
larger
a
proportionof memory failure experiences,relative to
mid-life periodmay contain
its
life,
supporting relationshipwith awareness.
earlierperiodsof
The hypothesisthat identity would be positively associatedwith level of awarenessof
functioning
was not upheld; in fact the oppositepatternwas found, i. e.
everydaymemory
definite
identity
more
and
were significantly associated with less
more positive
functioning.
Interestingly,theserelationships
memory
of
everyday
awareness
were only
found in relationto awareness
by the discrepancybetweenthe
as assessed
person'srating
Autobiographical memory, identity and awareness 22
informant,
functioning
that
their
of
an
and not when awareness was
and
memory
of
between
discrepancy
in
terms
the
actual performance on a memory task and
of
assessed
Hannesdottir's
(2004)
Morris
and
model suggests that in the
ratings of performance.
input,
decisions
be
based
ability
regarding
would
perceptual
of
recent
made
absence
on
the information contained within the PDB. If the PDB is not updated then it will support
the belief that functioning is at pre-morbid levels, the individual will not be required to
integrate changes into their identity and will, therefore, feel more definite in terms of
their identity, but ongoing awarenesswill be compromised. Another possibility is that
PDB,
degradation
thus
the
memory,
and
semantic
will erode general ideas about
of
any
identity and force a search of episodic memory for self-relevant information.
Identity
decisions will then be basedon a single relevant incident, but with the information being
in
to
the
a
resulting
self
as
whole,
more all or none responses. The PDB
generalised
impaired
leading
be
to
awareness,but this would be associated with
compromised
would
(Addis
identity
&
Tippett,
2004).
definite
responses
more
Alternatively, the relationship between more definite identity and less awareness could
indicate the operation of defensive strategies, designed to protect the self from the
distress
failure.
associated
with
psychological
It is more dim 'cult to util i se these
face
direct
disconfirmation,
in
the
of
such as when completing a standardiscd
strategies
memory assessment,as with the memory performance aspect of the MARS.
This study providessomepreliminary findings with respectto the relationshipsbetween
autobiographicalmemory, self, and awareness,but more researchis neededin order to
Autobiographicalmemory, identity andawareness23
better understandthe processesinvolved. Longitudinal studies would be particularly
found
have
been
in
(Vasterling
impairments
to
time
progress
over
awareness
et
as
useful,
has
limitations,
for
The
the
1995).
number
of
a
study
also
current
example, the
al.,
heterogeneity of participants with respect to age, MMSE score, and diagnosis, with
interindividual.variability possiblyhaving contributedto a lack of significant results in
imbalance,
females
There
substantially
with
gender
more
wasalso a notable
somecases.
than maleshavingparticipated.As therewas no obvious differencebetweenthe genders
in termsof thoseagreeingto participateonceapproached,this imbalancecould reflect the
by
females
the memoryclinic, genuineunsuitability of those
to
seen
actualratio of males
difficulties
in
functioning,
terms
with
psychological
physical,
of
or
social
screened
males
functioning
in
bias
the
regarding
of males relative to females.
perceptions
or a
Unfortunatelythe dataare not availableto test thesehypotheses,but this is anotherissue
in
be
to
addressed any future studies. T'he minimum number of
that would need
the
to
power
study was estimatedto be 28 (Cohen,
adequately
required
participants
1992), and althoughthis was exceeded,the correctionsneededto control for multiple
testing restrictedthe interpretationof some results. A greater number of participants
have
contributedto the significanceof someof the relationships.
would, presumably,
In conclusion,althoughthe resultshaveto be interpretedcautiously,due to a reductionin
findings
following
correctionsfor multiple testing, it seemsthat
the numberof significant
important
is
relative to other periods,in terms of its associationwith
the mid-life period
identity and awareness. This stage of life is perhapsthe first to contain prodromal
incidencesof memory failure, occurring before the diseaseprocessinterfereswith the
Autobiographicalmemory, identity andawareness24
(Graham
& Hodges, 1997;
episodic
memories
of
new
autobiographical
consolidation
Greene & Hodges, 1996; Greene et al., 1995; Kopelman, 1989). At this stage, the PDB
be
but
this would require the
awareness,
support
still
updated
and
would
probably
would
individual to integrate these changes into their sense of self. This could result in less
for
identity,
but
in
the
sufficient
restructuring
allow
of
self,
regarding
order to
certainty
dynamic
the
reconstructive relationship with autobiographical memory
maintain
(Conway & Pleydell-Pearce,2000), and the encoding of instances of failure in
it
Thus,
focusing
that
seems
memory.
models
autobiographical
on cognitive
factors
canaid our understandingof awareness,but they do not offer
neuropsychological
Future
the
Autobiographical
the
of
use
mid-life
section
explanation.
of
comprehensive
a
Memory Interview may further our understandingof a potentially important, and often
its
lifetime
period,allowing contributionto awarenessand senseof self to be
overlooked,
further explored,andthe resultsto be generalised.
Autobiographicalmemory, identity and awareness25
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APPENDIX I
TABLES AND FIGURE IDENTIFIED IN THE TEXT
Autobiographical memory, identity and awareness I
N
AMI PersonalSemantic
AMI PersonalIncident
MARS
TSCS-11
Table 1.
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
MFS-D
MPS-D
Definite Responses
Identity
30
30
30
30
30
30
30
30
30
30
30
30
26
30
29
29
Maximum
possible
score
63
78
21
21
15
21
27
33
9
9
6
9
52
52
100*
100*
Mean
45.9
55.5
16.5
15.5
9.6
13.9
11.1
12.5
5.2
3.6
1.4
2.3
14.5
13.1
55.9
50.2
SD
9.0
11.4
4.1
3.4
3.0
4.2
4.8
5.2
2.1
2.2
1.3
1.9
14.8
7.1
6.9
9.5
Performancedata relating to autobiographical memory, awareness,and
identity (* T-scores).
Autobiographical memory, identity and awareness 2
Alzheimer's
group
Mean (SD)
MMSE
AMI Personal Total
New Total
Semantic
Childhood
Early Adulthood
Mid-Life
Recent Life
AMI Personal Total
New Total
Incident
Childhood
Early Adulthood
Mid-Life
Recent Life
MFS-D
MARS
MPS-D
Definite
TSCS-11
Responses
Identity
Table 2.
Other dementia
group
Mean (SD)
23.3
47.0
57.2
15.9
15.9
10.3
15.2
11.9
13.5
5.4
3.7
1.6
2.9
14.3
12.3
56.0
(3.8)
(9.3)
(11.2)
(4.6)
(3.2)
(2.7)
(3.7)
(4.9)
(5.3)
(2.0)
(2.3)
(1.5)
(1.9)
(14A)
(7.0)
(6.4)
20.6
43.7
52.0
17.7
14.7
8.3
IIA
9.5
10.7
5.0
3.3
1.2
1.2
15.0
14.8
55.7
(2.5)
(8.6)
(11.4)
(2.6)
(3.8)
(3.1)
(4.1)
(4.6)
(4.7)
(2.4)
(2.0)
(0.8)
(1.5)
(16-5)
(7.2)
(8.3)
50.6
(8.9)
49.6
(11.3)
2.04
94
.
1.20
-1.34
95
.
1.77
2.59
1.30
1.39
43
.
47
.
85
.
2.43
11
-.
93
-.
10
.
051
.
355
.
239
.
190
.
351
.
088
.
015*
.
206
.
174
.
672
.
646
.
403
.
022*
.
911
.
362
.
920
.
26
.
800
.
Comparison of mean scores for the Alzheimer's disease and 'other
dementia' groups (*p<. 05).
Autobiographical memory, identity and awareness 3
AMI PersonalSemantic
AMI PersonalIncident
MARS
TSCS-11
Table 3.
Total
New Total
Childhood
Early Adulthood
Mid-Life
RecentLife
Total
New Total
Childhood
Early Adulthood
Mid-Life
RecentLife
MFS-D
MPS-D
DefiniteResponses
Identity
Correlations between MMSE
MMSE score
r
427
.
439
.
015
-.
482
.
380
.
549
.
140
.
188
.
111
.
071
.
230
.
153
.
218
-.
353
-.
258
-.
-.037
scores and
p
009**
.
008**
.
468
.
004**
.
019*
.
001**
.
230
.
160
.
279
.
355
.
110
.
209
.
142
.
028*
.
088
.
423
.
scores on
the
autobiographical memory, awareness,and identity measures.
(*p<0.05, **p<0.01, correlations in bold are significant once
a
Bonferroni correction has been applied to the data, P=0.003).
Autobiographical memory, identity and awareness 4
TSCS
Identity
AMI PersonalSemantic
AMI PersonalIncident
Table 4.
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
r
1636
.
1473
.
1309
.
1992
.
0599
.
0617
.
0531
.
0449
-.
0644
.
0970
.
3877
-.
0458
-.
P
203
.
227
.
253
.
155
.
381
.
378
.
394
.
410
.
372
.
312
.
021*
.
408
.
TSCS Definite
Responses
rp
2537
096
.
.
2030
150
.
.
1759
185
.
.
4252
012*
.
.
496
-. 0020
.
0275
445
.
.
2609
090
.
.
1454
230
.
.
2037
149
.
.
3524
033*
.
.
4102
015*
-.
.
0392
421
.
.
Partial correlations between the autobiographical memory and identity
for
the effect of general cognitive ability.
variables, controlling
(*p<0.05, Donferroni corrected p=0.002).
Autobiographical memory, identity and awareness 5
AMI PersonalSemantic
AMI PersonalIncident
Table 5.
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
Total
New Total
Childhood
Early Adulthood
Mid-Life
Recent Life
MARS-MFS-D
rp
0266
450
.
.
0229
457
.
.
0646
380
.
.
1868
186
.
.
439
0321
-.
.
207
1710
-.
.
1491
238
-.
.
094
2717
-.
.
239
1485
-.
.
470
0158
.
.
002*
5603
-.
.
123
2414
-.
.
MARS-MPS-D
rp
372
-.0633
.
0678
374
-.
.
0719
355
.
.
0461
406
-.
.
0608
377
.
.
1935
157
-.
.
1437
229
-.
.
1325
264
-.
.
1056
293
-.
.
1011
301
-.
.
143
-.2049
.
1328
246
-.
.
Partial correlations between the autobiographical
memory
for
general cognitive ability.
awarenessscores,controlling
(*p<0.01, Bonferroni corrected p=0.002).
and
Autobiographical memory, identity and awareness 6
TSCS Definite
Responses
TSCS
Identity
MARS-MFS-D
rprp
4980
.
006*
.
5503
.
002*
.
MARS-MPS-D
2196
.
131
1901
166
Table 6.
.
.
.
Partial correlations between identity and awareness variables,
controllingfor generalcognitiveability.
(*p<0.01,significantagainstBonferroni correctedvalue of p=0.006).
Autobiographicalmemory, identity and awareness 7
Figure 1. Mean percentage recall of personal semantic
and personal Incident memories
100
90
80
70
60
so
40
30
20
10
I
-4-Personal Semantic
PersonalIncident
Oildhood
Early
AdU#x)od
Mid-life
Lifetime period
Recwt Ufe
APPENDIX 2
NOTES FOR CONTRIBUTORS
3rd party copyright material excluded from cligitised thesis.
Please refer to the original text to see this material.
SECTION FOUR - DISCUSSION PAPER
CONTENTS
Page
Title page
..................................................................
Discussion paper
..........................................................
2
References
..................................................................
13
Contributionsto theory,practiceandlearning I
Contributionsto theory,clinical practiceandlearning.
Emma C. Naylor, University of Wales Bangor
North WalesClinical PsychologyProgramme,Schoolof
Addressfor correspondence:
Psychology,University of Wales Bangor, Bangor, Gwynedd, LL57 2AS, United
Kingdom. Telephone: +441248 382205, Fax: +441248 383718,
E-mail: [email protected]
Contributionsto theory,practiceand learning 2
CONTRIBUTIONS TO THEORY, CLINICAL
PRACTICE AND LEARNING
The current study represents part of a larger ongoing study into awareness in
dementia,with the details of this representedin the ethics application. This paper
issues
discussion
key
focus
three
to
the
of
and
relevant
a
review
of this
represents
thesis. Implicationsfor future researchandtheory development,and clinical practice
followed
by
be
be
This
reflectionson the personalexperienceof
will
considered.
will
conductingthe research.
Implications for future research and theory development
Future research will
be considered in relation to the personal experience of
conducting future research and future research in the wider academic community.
Implications will be considered by reflecting on some of the issues encountered
during the research process associated with the current study, discussed in roughly
chronological order.
Implications for theory development will be based on the
findings of the current study and issuesfrom the relevant literature.
Recruitment
The initial processof identifying potential participantsentailed reviewing memory
clinic records,talking with memory clinic staff, and liaising with local researchers
had
alsoconductedstudieswith this population. Despitethe criteria for the study
who
not seemingparticularly restrictive, it was difficult to identify participantswho both
met the criteria and whom clinical staff consideredto be appropriatefor inclusion.
For example,staff suggestedthat some individuals should not be
approachedfor
Contributionsto theory,practiceandlearning 3
depression
the
the
family
included:
person,
of
part
on
or
that
anxiety
conflicts,
reasons
interfere
task
hearing
that
performance,
with
would
problems
sight
or
significant
difficulties with adjustment to the disease, and general life stressors. Thus, what
to
a
like
was
reduced
participants
of
potential
pool
sizeable
reasonably
a
seemed
individuals.
relatively small subsetof suitable
Where possible, details of the study were, initially communicatedto potential
knew
the
the
staff
who
personwell, and
clinic
memory
of
participantsvia a member
further
The
by
to
facilitate
the
the
explain
study.
researcher
a visit
who could
if
by
the
they
telephone
and
asked
would
allow
contacted
were
remainingpeople
decide
they
that
they
the
could
to
so
whether
study,
explain
and
visit
researcher
informed
by
Nobody
the
to
take
of
study
was
purely written means.
part.
wished
Fortunately, 83% of the people approachedconsentedto take part in the study. Most
is
it
diflicult
initial
do
to gauge the relative
so
rates
response
not report
studies
higher
However,
than anticipatedresponserate could
this
the
recruitment.
successof
devoted
to the earlier stagesof participant identification,
the
time
and effort
reflect
during
'personification'
the recruitmentprocess. Although
the
the
of
research
and
this processwas time-consuming,the flow of participantsremainedconstant,which
probably reduced the overall time-scale of the assessmentstage, and hopefully
for
the participants. This highlights the value
a
more
satisfying
experience
provided
of carefulplanningandeffort at this early stage,in orderto ensurethe smoothrunning
of the study.
Contributionsto theory,practiceandlearning 4
Sample
The sample was heterogeneouswith respect to level of general cognitive functioning
as assessedby MMSE score, age, and diagnosis. The impact of general cognitive
functioning was controlled for during the analysis. With respect to the impact of age
is
literature
in
dementia,
the
mixed; with Derouesne,et al. (1999)
on awareness
finding that decreasedawarenesswas positively correlatedwith age,but with Gil et
al. (2001)finding no relationship. The inclusion of peoplewith Alzheimer's disease,
vasculardementia,and mixed (Alzheimer's diseaseand vascular)dementiaincreased
the potential pool of participants, but could have impacted on the results by increasing
interindividual variability. Much of the research in the dementia literature relates to
Alzheimer's diseaseor semantic dementia, with mixed and vascular diagnoseshaving
received little attention, making it more difficult to interpret the results by reference to
the literature. Future studies, based on bigger sample sizes, could investigate the
in
in
this
study relation to different types of dementia.
relationships examined
Although the screening carried out prior to the actual recruitment was motivated by
a
desire to avoid causing distress to the most psychologically, physically,
or
emotionally vulnerable individuals, it is feasible that this process biased the results in
All
participants were required to be in the early-stages of dementia, but it
way.
some
is possible that those who were included represented a more able
subset due to the
lack
of psychosocial difficulties. There doesn't seem to be any easy answer
relative
to this dilemma, as ethically and professionally it is important to be guided by the
staff who know the person best, and on whose co-operation one is so dependent.
Contributionsto theory,practiceand learning 5
Assessments
The measuresutilised were the most well validated and widely used in each case,
The
in
issues
that
them
to
two
considering.
thoughsome
of
are worth
arose relation
AutobiographicalMemory Interview (AMI, Kopelman,Wilson, Baddeley,1990)was
lifetime
'mid-life'
to
the
by
the
assess
section
period covering
addition of a
amended
40 to 60 years of age. This was developedby a local researcherin responseto
did
1997)
AMI
&
Hodges,
(e.
Graham
that
the
the
version
of
original
not
criticisms g.
life.
between
Significant
the
and
adulthood
early
recent
period
assess
adequately
findings in relationto the mid-life period suggestthat this may be an importantareato
lack
knowledge
However,
future
in
the
of
current
studies.
regardingthis
consider
interpret,
difficult
data
to
the
to
with
the
no
study
empirical
of
results
period made
findings.
interpretations
Future
the
the
made
of
validation of this
of
supportsome
in
AMI
be
important,
to
the
order
as a systematicmeasurefor
maintain
will
section
lifespan.
the
across
memory
autobiographical
assessing
The TennesseeSelf-Concept Scale, Second Edition (TSCS-11;Fitts & Warren, 1996)
be
for
to
the
measure
use with older adults (Byme, 1996).
most
appropriate
seemed
However, a change neededto be made to item number 5 1, from 'I treat my parents as
family
I
I
'I
to
treat
as
my
well
as
as
should'
should', as most participants'
well
deceased.
Although every effort was made to facilitate participants'
parents were
responsesto this measure,such as providing a printed version of the response forniat,
and reading the statements aloud, people reported finding some of the items
complicated, especially those that were negative in orientation, for example, 'I do not
know how to work well'.
In order to ensure that the responses people gave were
valid, more time was devoted to this measure than had initially been anticipated. As
Contributionsto theory,practiceand learning 6
this scalebreaksdown into subscalesthat relateto different domainsof self-concept,
for example, family, moral, etc., future studies may wish to consider using only the
Addis
Tippett
(2004) administeredjust the short form, and
elements.
and
relevant
althoughthis precludesthe calculationof subscalescoresfor clinical purposes(Fitts
& Warren, 1996),their treatmentof the scoresin this mannermay be acceptablefor
someresearchpurposes.
The amendmentsmadeto both assessments
meanthat the resultsmust be replicated
before they can be generalised. Future exploration of mid-life and how it relates to
self and awarenessmay help to elucidate the significance of this lifetime period.
Testing
Participants were variable in their capacity for sustained attention, and whilst some
completed the assessmentsin one session,others required that the assessmentprocess
be carried out over two sessions. This again had implications for time management
for both the researcherand for the participants. In future it may be prudent to include
more of a time contingency when forecasting data collection targets. It may be
possible that the number of sessions required represented an important aspect of
between
participants, but this was not explored.
variability
TheoryDevelopment
Numeroustheoriesandmodelswere drawnupon in orderto interpretthe
resultsof the
The
study.
cognitivemodel of Morris and Hannesdottir(2004) was usedas a
present
basisfor understandingthe findings relating to mid-life, i. e. greater
recall of mid-life
incident memoriesrelating to greater awarenessbut less definite identity. It
was
Contributionsto theory,practiceand learning 7
hypothesisedthat this period may represent a prodromal stage in the diseaseprocess,
during which the PDB was probably still being updated and supporting awareness,but
in
individual
to
their
the
update
senseof self, resulting
awarenessof changesrequired
less certainty regarding identity.
identity.
definite
Tippet
Addis
Overall,lessawareness
more
with
and
was associated
(2004) suggestthat this type of finding may reflect the degradationof semantic
ideas
identity
forces
PDB,
the
thus
general
about
a
erodes
and
which
and
memory,
information.
for
Identity
decisions
self-relevant
are then
memory
searchof episodic
basedon a singlerelevantincident,but the information is generalisedto the self as a
impaired
Therefore,
is
in
or
none
responses.
more
all
awareness
resulting
whole,
definite
identity.
If
that
this were the case,
suggest
more
responses
with
associated
definite,
increasingly
but
inflexible,
restricted
and
senseof self in
onemight expectan
line with increasingpersonalsemanticmemory impairment. It is obvious that much
done
in
in
fully
be
this
to
to
area,
order
work
needs
elucidatethe natureof PDB
more
and its relationship to identity and awareness. Longitudinal studies would be
beneficial, as predictions could be made and tested over time within the same
participants.
Implications for clinical practice
The literaturesuggeststhat higher levels of awarenessare relatedto higher levels of
depressionin the person with dementia, but lower levels of stress, burden, and
depressionin caregivers(e.g. De Bettignies,Mahurin, & Pirozzolo, 1990). Greater
is
awareness alsorelatedto betteroutcomesfollowing cognitive rehabilitation(Clare,
Contributionsto theory,practiceandlearning 8
Wilson, Carter, Roth, & Hodges, 2004).
These findings suggest that greater
independence,
both
help
the
autonomy
and
maintain
relative
person
awarenessmay
by supporting rehabilitation outcomes and by reducing carer stress,allowing people to
in
for
longer.
However,
this
given that greater awarenessseemsto relate
role
perform
to greater psychological distress on the part of the person with dementia (De
Bettignies; et al., 1990) and, according to the findings of the current study, less
definite identity, interventionsto increaseawarenessneedto considerhow to support
senseof self andmood.
Pratt, Clare, and Aggarwal (2005) described the development of a user-led model of
intervention for people with dementia. This support group provided a social context
within which group members could discuss issues and difficulties, ways of coping,
for
fidure
how
affects
planning
events. The aims were to reduce stress
and
memory
integrated
isolation,
support
sense
and
an
and
of
sense of self Whilst incorporating
recent changesin self, Thus the group could help to support awarenessand ongoing
sense of self, whilst providing the support necessary to assuage difficulties with
mood. Such groups are in their relative infancy and require evaluation. Pratt et al.
also point out that even though early intervention may prevent future difficulties, the
immediate needs of people in the early-stages of dementia may
not be defined as
ccomplexenough' for local health services to justify ongoing input.
Personaland processissuesarising from the conduct of the research
This sectionrepresentsreflections regardingthe personalexperience
of conducting
this research,and the lessonslearnt. Although someof theseissues
relate to those
Contributionsto theory,practiceandlearning 9
discussed in the section on future research and theory development, this section
intellectual,
journey.
than
the
more
of
emotional,
rather
reflects
Time
Reflectionsrelating to the personalexperienceof conductingthis researchcould not
discussion
than
a
regarding time issues. The
possibly start with anything other
biggestlessonhere being to allow much more time than you think you will need,in
the hope that this will lessenthe stressand senseof frustration. The whole thing
looked remarkably straightforward on paper, a timetable containing projections
relating to the date of ethical approvalbeing granted,numbersof participantsto be
be
drafts
to
written, etc, clearly showedthat I had the whole thing well
recruited,
just
Unfortunately,
everything
control.
seemedto take so much longer than
under
longer
Ethical
took
to securethan anticipated,partly due to the
approval
anticipated.
documents
into
Welsh, a requirementthat I shouldhave
to
translate
participant
need
into a secondsessionalso slowed
anticipated. Having to extend the assessments
down the process,especiallyas participantswere drawn from a large geographical
lot
necessitating
a
area,
of travelling. The tension engenderedby a 'slipping'
timetable had to be monitored and contained,so that it did not interfere with the
quality of the participants'researchexperience.
Ethical issues
Although I had worked clinically with people %kithdementia,I initially felt a level
of
anxiety with respect to striking the right balance between ensuring that people
appreciatedwhat they wereconsentingto, andnot being patronising. Fortunately,this
provednot to be an issueas,just aswith any person-centredapproach,the tailoring of
Contributions to theory, practice and learning 10
information to the person's requirements felt quite natural. Consent was always
happy
to continue with the
were
and
all
participants
revisited on second visits
assessments.
As well as these more formal aspectsof ethical practice, issuesarose during the
feel
For
that
example,most peoplespontaneouslyvoiced
me
uneasy.
made
research
being
it
in
for
help
the
to
take
that
popular
most
might
agreeing
part,
others
reasons
the future. However,someparticipants,who had minimal socialcontactin their daily
lives, madereferenceto the fact that taking part in the researchfulfilled their desire
for human company. Although all reasonsfor agreeingto participate are equally
decisions
driven
feel
did
by
I
that
some
people's
were
uncomfortable
such a
valid,
basic human need. However, most participantsreported a senseof validation at
havingtheir storieslistenedto.
"y
didn't I...
One frustrating aspect of conducting the research was a recurring sense that it could
have been approached differently/better/taken
into account other variables, etc, etc...
This seemed to occur in line with a growing appreciation of the size and scale of the
literature. However, through discussionswith other researchers,I developed an
have
that
to be manageable,both for the researcherand for the
studies
appreciation
Also,
that researchproceedsin small steps,despitethe scaleof the task of
participant.
building a knowledgebase.
Contributionsto theory,practiceandlearning II
Thepeople
instance
in
of
involved
this
the research at
point representsan
Discussing the people
last.
Unsurprisingly,
the
of
this
best
aspect
rewarding
most
was
the
until
saving
be
involved,
they
The
supervisor,
everyone
of
the
generosity
research.
conducting
failed
to
never
participants,
course
of
and
memory clinic staff, other researchers,
bleak
(as
looked
they
things
occasionally
through
when
me
carried
amaze me, and
did).
failure,
the
to
tolerate
alongside
of
experience
The willingness of participants
inspirational.
Also,
their
demonstrate
at
their
gratitude
was
to
abilities,
opportunities
humbling.
hope
I
Although
I
knowledge
important
was
being treated as an
source of
dementia
impact
diagnosis
devastating
that
the
a
of
can
would never underestimate
have on an individual, and those close to them, it seemsthat how you live, rather than
live
is
lesson
I
by
key,
is
that
live
the
can
a
everyday.
that
and
with
what you
Conclusion
in conclusion,conductingthis researchhas been a huge learning experience. The
long
has
had
its
time
the
the
ago
a
and
process
seems
of
research
conception
original
highs and lows. Someaspectsof the researchwent betterthan anticipated,including
the recruitmentstage,whereassomeaspectswere more difficult to manage,such as
the time constraints. I will certainly never again underestimatethe amountof workimplement
Will
in
design,
I
to
up
a
study.
and
write
conduct
research the
required
future?Perversely,the senseof frustrationand stressexperiencedin associationwith
the current study might provide some motivation to conduct more researchin the
Contributionsto theory,practiceandlearning 12
future, in the hope that next time it will feel better. Though, ultimately, it will be the
dementia,
to
a
and betterunderstandtheir experiential
chance work with peoplewith
lure
that
will probably
me back.
world
Contributionsto theory,practiceandlearning 13
References
Addis, D. R. & Tippett, L. J. (2004). Memory of myself.- Autobiographical memory
12,56-74.
Memory,
disease.
in
identity
Alzheimer's
and
DC:
Washington,
Span.
Life
Across
Setf-Concept
the
Measuring
(1996).
Byme, B. M.
AmericanPsychologicalAssociation.
Clare, L., Wilson, B. A., Carter, G., Roth, I. & Hodges, J. R. (2004). Assessing
disease:
Development
Alzheimer's
in
the
and
piloting
of
early-stage
awareness
Memory
Awareness Rating
Scale. Journal
of
clinical
and
Experimental
Neuropsychology, 26,215-226.
DeBettignies,B. H., Mahurin, R. K. & Pirozzolo,F. J. (1990). Insight for impairment
in independentliving skills in Alzheimer's disease and multi-infarct dementia.
Journal of Clinical and Experimental Neuropsychology, 12,355-363.
Derouesne,C., Thibault, S., Lagha-Pierucei,S., Baudouin-Madec,V., Ancri, D.
Lacomblez,L. (1999).Decreasedawarenessof cognitive deficits in patientswith mild
dementiaof the Alzheimer's type. International Journal of Geriatric Psychiatry, 14,
1019-1030.
Setf-ConceptScale SecondEdition
Fitts, W. H. & Warren,W. L. (1996). Tennessee
Manual. Los Angeles, CA: Western Psychological Services.
Contributionsto theory,practiceand learning 14
Gil, R., Arroyo-Anllo, E. M., Ingrand, P., Gil, M., Neau, J. P., Omon, C. & Bonnaud,
V.
(2001). Self-consciousness and Alzheimer's
disease. 4cta Neurologica
.
Scandinavica, 2001,296-300.
Graham,K. S. & Hodges,J. R. (1997). Differentiating the roles of the hippocampal.
Evidence
from
in
long-term
the
storage:
memory
study of
the
and
neocortex
complex
11,77-89.
Neuropsychology,
disease.
dementia
Alzheimer's
and
semantic
Kopelman, M. D., Wilson, B. A. & Baddeley, A. D. (1990). The Autobiographical
Memory Interview. Bury St Edmunds: Thames Valley Test Company.
Morris, R. G. & Hannesdottir, K. (2004). Loss of awarenessin Alzheimer's disease.
In R. Morris & J. Becker (Eds.), Cognitive Neuropsychology ofAlzheimer's Disease.
Oxford: Oxford University Press.
Pratt, R., Clare, L. & Aggarwal, N. (2005). The 'Talking About Memory Coffee
Group': A new model of support for people with early-stage dementia and their
fatnifies. Dementia: The International Journal of Social Researchand Practice, 4,
143-148.
SECTION FIVE - WORD COUNT
Statement of word count
Thesis component
Word Count
Title
10
Main Abstract
299
Ethics Application (including introduction)
5023
Literature Review (including abstract & header)
4316
ResearchPaper (including abstract & header)
5489
Discussion Paper (including header)
2637
Total:
17777
Other components
References
3038
Appendices:
Information and consent forms
8899
Measures
4546
R&D application
1751
Tables
630
Total:
Overall Total:
18864
36641