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Australian Journal of Dementia Care
October/November 2016 Vol 5 No 5
I
n my years of advocacy, I have spoken
and written about what are referred to as
BPSD, or behavioural and psychological
symptoms of dementia. I argue that these
are not
symptoms
, as this implies an
inevitable consequence of the brain
pathology that has led to the condition of
dementia.
The word ‘symptom’ may be defined as
any
subjective
evidence of disease: it is what
the person himself or herself reports. For
example, I might describe word-finding
difficulties to my clinician. However, a sign
is
objective
, in that a clinician can observe
that evidence, such as my being unable to
name familiar objects. Therefore
behavioural changes would be correctly
described as ‘
signs’,
not symptoms, and I
suggest the termBPSD be understood to
represent a set of signs.
Signs, not symptoms
I regard the behaviours expressed by
people living with dementia as
signs
of the
struggles of coping within the care
environment. You need to put yourself in
the shoes of the person who is living with
dementia, who is experiencing memory
loss and confusion, and also
communication difficulties. People around
them, as well as their surroundings, no
longer seem to be familiar, andmany
unexplained things seem to be happening;
yet the person with dementia is less able to
communicate their needs and feelings.
For someone with declining cognition in
a challenging environment, a range of
changed behaviours could be expected as a
means of survival. Joseph LeDoux (2014,
2012) has proposed the evolution of innate
survival circuits to control responses to
significant stimuli. He suggests these
behavioural survival circuits enable our
response to situations in which we face a
challenge or opportunity, where
environmental stimuli, memory, feedback,
and language interact within the ‘cognitive
workspace’ to result in arousal and
response. I suggest these survival
responses are seen in people with
dementia, who face an abnormal situation
of strangeness and stress, as well as a
decreasing ability to cope.
In my talks and books, to describe what
might be happening, I have referred to the
words of Viktor Frankl (1985), who wrote:
“An abnormal reaction to an abnormal
situation is normal behaviour”. I have used
the words ‘adaptive behaviours’ or
‘responsive behaviours’ to describe BPSD
in talks that I have given inAustralia and
internationally from 2001 onwards. In a
literature review, I wrote that these
behaviours could be regarded as “adaptive
responses to the experience of cognitive
decline” (Bryden 2002 p154).
This article focuses on an experiential
approach to understanding the behaviours
that are observed in people living with
dementia. I propose an alternative
meaning for the acronymBPSD, so as to
encourage non-pharmacological responses
to these non-verbal communications by
people living with dementia.
BPSD as a well-accepted term
I agree that BPSD does have its place
(Williams 2016) as a well-accepted term for
clinical practice, biomedical and
psychosocial research.
The International Psychogeriatric
Association (IPA) writes that changed
behaviours have been observed in
dementia sinceAloisAlzheimer’s
descriptions of Auguste D in 1906 (IPA
2002). Tools were developed for measuring
these changes, such as the Cohen-
MansfieldAgitation Inventory (CMAI) in
1986, the Behavioural Pathology In
Alzheimer’s Disease (BEHAVE-AD) Scale
in 1987, the Neuropsychiatric Inventory
(NPI) in 1994, and the Consortium to
Establish a Registry for Alzheimer’s
Disease (CERAD) in 1996. BPSDwere
considered to be important, occurring in as
many as 80% of people with dementia, and
were often the reason for people with
dementia entering residential care, and for
increased hospitalisations. However, it was
not until the 1990s that there was an
increased interest in research into BPSD,
including into pharmacological treatments.
In 1996, the need for a clinical consensus
for these observations led to the IPA
establishing a BPSD task force, sponsored
by Janssen-Cilag and Organon (Finkel
2000). In 1999, after a secondmeeting (again
sponsored by Janssen-Cilag and Organon),
the consensus recommendationwas: “The
termbehavioural disturbances should be
replaced by the termbehavioural and
psychological symptoms of dementia
(BPSD), defined as symptoms of disturbed
perception, thought content, mood or
behaviour that frequently occur in patients
with dementia” (Finkel & Burns 2000 p10).
Behavioural symptoms were identified
by basic observation, and psychological
symptoms by interviewing people with
dementia and relatives. The IPAset a
research agenda based on this term. This
definition appears in theAmerican
PsychiatricAssociation (APA)
Diagnostic
and Statistical Manual of Mental Disorders
(DSM-5)
, which is the standard
classification of mental disorders used by
clinicians around the world (APA2013).
InAustralia, the Dementia Behaviour
Management Advisory Services (DBMAS)
uses this definition in the resources and
services it provides to assist in managing
changes in observed behaviours in people
with dementia. The DBMAS
Guide for
family carers
refers to Professor Henry
Brodaty’s seven-tieredmodel for
management of BPSD, with Tier One being
no dementia and Tier Seven being
dementia with extreme BPSD (Burns
et al
2012).
Arecent review article by Kales and
colleagues (2015) demonstrates that the
termBPSD is used around the world in
clinical practice, as well as for biomedical
and psychosocial research (including
assessment of pharmacological and non-
pharmacological treatments). There are
many studies in humans and animals, from
countries as varied as the US, UK,
Australia, Japan, China, Sweden and
European countries, which all use this
well-accepted term.
Lack of definitions and criteria
Cerejeira and colleagues (2012) note that
the pathogenesis of BPSD has not been
clearly delineated, and suggest a complex
interplay of psychosocial, social and
biological factors. Clinically, the changed
behaviours seen in dementia are regarded
BPSD: alternative understanding
of a well-accepted term
Christine Bryden
gives a brief overview of BPSD and, from the perspective of a person
living with dementia, proposes an experiential understanding of the acronym to prompt
improved responses by caregivers to these non-verbal communications