Dementia Care

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16 Australian Journal of Dementia Care June/July 2016 Vol 5 No 3
implicit assumptions.
• When communicating for a particular reason to
a particular audience (ie strategically), reflect on
how people with dementia might feel about
your portrayal.
• Reflect on how people with dementia are
portrayed by others, what kinds of messages are
being communicated and possible reasons for
trying to convey a particular perspective.
• Be prepared to challenge the way dementia is
portrayed if you feel that it is inaccurate,
disrespectful or misleading.
In summary
How well the terms or words we use compare
against such a list of principles will be a matter of
individual interpretation. Only a process of
reflection will allow us to challenge ourselves to
question our assumptions and beliefs. It is through
discussion and reflection that change occurs and
what may have seemed unthinkable in years past
can become acceptable in the here and now.
What we can be sure of is the debate is not going
to dissipate of its own accord. Language will
always evolve, even if agreement is reached in the
short term. However, genuine dialogue and
inclusion with people with a cognitive disability
on this and other issues is a positive and proactive
approach.
The terms ‘responsive behaviour’, ‘changed
behaviour, ‘distressed behaviour’ and
‘behavioural expression of distress’ are options
which may be appropriate according to the
situation that is being portrayed or discussed.
‘Responsive behaviour’ may help to convey a
sense of agency and meaningfulness on the part of
the person with dementia, but it will usually need
some explanation so that the term is understood.
The term BPSD is still the language of research,
which must rely on clarity of terminology for
‘good’ science to occur. But we are right to
question its use and reflect on the impact of this
term. What alternative might serve researchers
and at the same time not create the potential for
further stigma or loss of hope? Does ‘behavioural
and psychological changes in dementia’ serve as a
useful middle ground at this point in the debate?
‘Changes in behaviour’ or ‘behavioural changes’
are plain English terms and widely accessible. The
words ‘behavioural and psychological changes’
may help to minimise the ‘disease lens’ or bio-
medical framing of behaviour.
Howsoever this is resolved, health professionals
who are responsible for responding to distress in a
person with dementia must encourage the
understanding in both care staff and family carers
that a person with changes in mood and behaviour
is working to interpret the world around them at
the same time as experiencing things like:
• altered perceptions of both time and space
• lower tolerance to stress
• the experience of being a recipient of care (where
this is relevant)
• communication changes/losses, and in
situations where distress is evident,
• a range of emotions from frustration, boredom
and uncertainty through to anxiety, fear, anger
and grief.
The notion that the person is making the best
sense of the world that they currently find
themselves in and using remaining skills is a
strengths-based approach. Further efforts to
convey this to care staff alongside a model of
person-centred care, such as the VIPS Model
(Brooker 2006) may help to thicken the narrative of
hope, enablement and engagement.
To be genuinely person-centred we need to
engage in self-reflective practice to question which
narrative we may be strengthening and engage
with people with the lived experience to expose
and eradicate the stigma of dementia.
Footnote
Other guidelines on language and dementia (not previously
referred to in this article) are:
• Dementia words matter: guidelines on language about
dementia, produced by The Dementia Engagement and
Empowerment Project. Available at: http://dementiavoices.
Language.pdf.
• Person-centred language, produced by The Alzheimer
Society. Available at:
Files/national/Culturechange/culture_person_centred_lan
guage_2012_e.pdf
The views expressed in this article are those of its author
and may differ from those held by the Commonwealth of
Australia. This article is not endorsed by the Australian
Government funded Dementia Behaviour Management
Advisory Service or the Australian Government funded
Dementia Training Study Centres.
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