Dementia Care

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Vol 5 No 3 June/July 2016 Australian Journal of Dementia Care 15
roles and perceived status of each party to the
communication, and so on. In many ways, these
contextual elements will guide the choice of
language. Choice of language will also depend on
the cultural appropriateness of the terminology
used and whether or not the phrase or term will be
translated into a different language.
While context is important, we should avoid
wherever possible the creation of any
circumstances which lead to divisions between
people due to terms being considered appropriate
for some situations and not for others. Instead,
there is value in a shared language around
behaviour and dementia. A shared understanding
is important because:
• No single group (researchers, medical staff, etc)
is necessarily immune from the way in which the
portrayal of behaviour and people with
dementia impacts on perception/thinking and
actions.
• Behaviour is complex, multifactorial, and
invariably changes over time –‘diagnostic
categories’ of behaviours are not typically
discrete or clearly delineated.
• Family or friends who are supporting a person
with dementia will vary considerably in their
level of knowledge and understanding of the
changes they and the person are experiencing.
• Responding to a person who communicates their
distress via behaviour is the responsibility of a
range of care staff with varying levels of skills
and knowledge (from workers with a Certificate
III level qualification to clinicians and
consultants across multiple disciplines).
• A shared understanding must be inclusive of
people living with a dementia.
• Although the meaning of the language we use
will need to be supplemented by descriptions,
aiming for inclusivity and accessibility in our
language will parallel wider efforts to promote
person-centred approaches, inclusivity and the
rights of people with a cognitive disability.
What questions will help
guide our choice of language?
There are a number of possible options for a set of
guiding questions or principles which will serve to
evaluate language and how people with dementia
and changed behaviour are portrayed. The first
four sets of questions are based on the VIPS model
of person-centred care (Brooker 2007).
• Does our choice of language convey to the
listener the value of the person who is living
with dementia, regardless of the person’s
actions, mood or level of cognitive disability?
• Does our choice of language convey a sense that
the person’s behaviour and/or psychological
states are complex and changing with a diverse
set of contributing factors unique to the person
and their circumstances?
• What is the perspective of people who have a
cognitive disability on the language choices
being made? What might be the perspective of
the person who is attempting to make sense of
their world with their remaining abilities?
• What impact might the language have on the
social environment experienced by a person
with dementia? Are there any unintended
consequences to our choice of words?
The following principles are a selection from a
report by Alzheimer Europe 2013 titled The ethical
issues linked to the perceptions and portrayal of
dementia and people with dementia. This report
provides an extensive and thought-provoking
reflection on the implications for well-being and
the connection to how dementia and people with
dementia are perceived and portrayed. The
statements below are a valuable guide to growing
our awareness of the narratives we create about
dementia:
• Avoid reducing people to numbers, objects,
medical cases and problems.
• Avoid portraying people with dementia as
‘other’, fundamentally different or inhuman.
• Reflect on ways to capture the dignity,
personhood, individuality and citizenship of the
people you are portraying.
• Make an effort to talk to people with dementia
and to obtain their feedback with regard to the
issues you intend to portray or report.
• Consider not only the message you wish to
communicate but also the different possible
ways it might be interpreted.
• Question your own assumptions about
dementia. Choose your words, metaphors and
images carefully.
• Consider what the words you use when talking
about dementia or people with dementia imply
and whether you personally agree with those
A secondary meaning for ‘BPSD’?
By Christine Bryden
BPSD refers to behavioural and psychological symptoms of dementia. This is
a term that is used and well recognised in academic and clinical situations.
However, it implies that behaviours shown by people with dementia are an
inevitable symptom of the condition. Therefore many families and care-
workers, as well as medical professionals, overlook the fact that these can be
expressive non-verbal communications of unmet need.
Potentially harmful pharmacological interventions, or inappropriate responses
such as restraints, may be used to address these so-called symptoms, rather
than insightful alterations to care.
I suggest a somewhat subversive approach, in which the acronym BPSD is
retained, but refers instead to Basic Personal Signs of Distress.
Care workers and families would be encouraged to identify unmet need and
to respond more appropriately to behaviours that may be causing some
concern.
Christine Bryden, former science advisor to the
Prime Minister, is living with dementia. She is an
advocate for people with dementia and has published
four books. Contact Christine via her website at
.
Christine will be writing more on this topic for AJDC
later this year.