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Vol 5 No 5 October/November 2016
Australian Journal of Dementia Care
21
as being a heterogeneous group of non-
cognitive ‘symptoms’. These
‘neuropsychiatric’ or ‘behavioural and
psychological’ signs are summarised in the
acronymBPSD, and used in clinical
practice to describe observed changed
behaviours. They are variable and
unpredictable, and there is a lack of
definitions and criteria for their diagnosis.
These authors (Cerejeira
et al
2012) also
write that it has been difficult to group
BPSD into sub-categories, and to determine
their association with levels of declining
cognition. It will be important to define
discrete clinical entities, as well as obtain
further insight into the high degree of
variability across all people with BPSD, in
order to develop appropriate interventions.
There is evidence for demographic and
environmental factors influencing
observed BPSD, suggesting that these
behaviours are ineffective attempts by the
person with dementia to cope with
environmental or physiological stress.
Reviewing a few further examples
shows that there is no association yet
proven between BPSD and the processes
underlying dementia, or even type of
dementia. For example, Kales
et al
(2015)
write that the causes of BPSD seem to be a
combination of increasing vulnerability to
stressors, personal and caregiver traits, as
well as environmental factors, underlying
medical conditions, and unmet needs. This
may explain why family caregiver
interventions aimed at implementing non-
pharmacological approaches have greater
effect than antipsychotics, which only have
modest effect and can cause adverse
events.
These authors therefore suggest non-
pharmacological approaches for BPSD,
such as those used in Sweden, where the
use of a BPSD registry focuses on such
interventions in residential care, resulting
in reduced BPSD and improved quality of
life (Mayer
et al
2014).
Feast and colleagues (2016) have found
that caregiver psychosocial factors can
explain more than half of the variance in
BPSD-related distress, which in turn has a
significant impact on the treatment of the
person with dementia and whether he or
she is placed into care. Another possible
influence on BPSD has been found to be a
person’s premorbid personality (Prior
et al
2016).
There is a need for a far better
understanding of the pathogenesis of
BPSD, and its presumedmultifactorial
causes. More evidence is needed on which
to base non-pharmacological or
pharmacological therapies to address
various behavioural changes.
Clearly, environmental factors, personal
and caregiver traits, unmet needs, as well
as underlying medical conditions, play a
significant role in BPSD. I do not consider it
appropriate to refer to these behaviours as
‘symptoms’ of dementia, as they have been
demonstrated to be signs of coping
strategies for a range of factors in the care
environment.
Language matters
Language frames the way in which
caregivers perceive people with dementia.
The word ‘behaviour’ brings to mind
naughtiness and bad behaviour; and the
word ‘symptom’ implies that little can be
done except a medical treatment. It is much
harder to argue for non-pharmacological
approaches if what is observed is
considered to be the result of the dementia
itself, or a symptom, rather than signs
emanating from factors other than the
dementia.
Mitchell and colleagues (2013 pp4-5)
write of the “violent and othering
processes” of the label of dementia and that
language can indeed be harmful. The
medical colonisation of dementia, and the
language around it, have profoundly
impacted the way in which others see and
engage with people with dementia, not
only in society but also, importantly,
amongst caregivers. The biomedical
discourse of ‘symptoms’ has come to
dominate responses to people with
dementia.
Downs and colleagues (2009) write of
how language can position the person as a
victim, so that he or she becomes
depersonalised, with all actions being
attributed to the labelled condition of
dementia. This “diagnostic
overshadowing” (Downs
et al
2009 p240)
disenfranchises the person with dementia
and can lead to inadequate treatment
options.
Downs
et al
refer to research that shows
much of the labelled behaviour can be
explained as an attempt by people with
dementia to communicate their needs to
others, and can also be better understood
in the context of the person’s life history.
The dialectical model proposed by these
authors accounts for the weak correlation
between ‘symptoms’ and pathology, and
the heterogeneity of clinical presentations
despite similar pathology. Aperson’s non-
verbal expressions of need can then be
understood as signs of an interplay
between neurological and sensory
impairment, physical health, personal
traits and social, care and environmental
factors.
The biomedical lens results in much of
what TomKitwood described as malignant
social psychology (Kitwood 2009). The
pathologising of behaviour in the care of
people with dementia has also been
criticised by Dupuis and colleagues (2012),
who conducted some interesting
qualitative research in a sample of care
facilities. Staff were asked to use the lens of
pathology to assign meaning to behaviours
observed in residents with dementia. They
found that the staff saw behaviours as a
‘challenging’ manifestation of the
‘symptoms’ of dementia, requiring crisis
management. The authors write of how the
biomedical discourse had overshadowed
any other meaning being seen as the cause
of the observed behaviours, thereby
resulting in potentially inappropriate care
and suffering in residents.
TheAlzheimer’sAustralia language
guidelines (Alzheimer’sAustralia 2014)
suggest describing what is observed as
‘changed behaviours’, or ‘expressions of
unmet needs’. These guidelines reflect
input frompeople with dementia and
therefore are based on an experiential
viewpoint. They are designed to minimise
stigmatising people with dementia on the
basis of their changing behaviours.
HollyMarkwell has made some
excellent points as to why language
matters in her recent article in
AJDC
(Markwell 2016). She argues for respect for
the lived experience of dementia, and for
care to be taken to reduce stigma by
ensuring that language choices do not have
a further negative impact on the social
environment of the person with dementia.
On the basis of a strengths-based approach,
where the person is making best sense of
the world using remaining skills, Markwell
suggests replacing the termBPSDwith
‘responsive behaviour’, ‘changed
behaviour’, ‘distressed behaviour’, or
‘behavioural expressions of distress’.
See meaning in behaviour
The termBPSD has been criticised as
implying that these behavioural changes
are inevitable or inexplicable, therefore
increasing the possibility of the use of
medication, rather than approaches such as
person-centred care (Brooker 2011). In this
care approach, the starting point is to try to
see meaning in the behaviour and what is
being ‘said’ and to regard it as a challenge
to the caregiver rather than being
attributed to the person with dementia.
Brooker and Lathamwrite of questions for
caregivers to ask such as “Is there
something about this person’s cognitive
disability that means they are
misinterpreting or becoming overwhelmed
by their situation?” (2016 p124).
Dupuis and colleagues (2012 p170) have
proposed the term ‘responsive behaviour’
as a way to conceptualise behaviour in the
context of dementia, which encourages
caregivers to understandmeaning in
actions and responses. Dupuis (2016)