Dementia Care

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14 Australian Journal of Dementia Care June/July 2016 Vol 5 No 3
Alternative terms
Changed behaviours
Responsive behaviour
(RB)
Behaviours of concern
Challenging behaviours
Expressions of unmet needs
Behavioural expression of
need
Behavioural expression of
distress
Distressed behaviour
Behavioural and
psychological symptoms
of dementia (BPSD)
Behavioural and
psychological indicators
of distress in dementia
Behavioural and
psychological changes in
dementia
This is listed as a preferred term in the Alzheimer’s Australia
Dementia language guidelines (AA guidelines). Neutral term
suitable for general use.
The term originates from the Murray Alzheimer Research and
Education Program (MAREP) (University of Waterloo, Canada)
and was created in consultation with people living with dementia.
It has now been adopted by the Ontario Government and the
newly formed BSO (Behavioural Supports Ontario).
The term RB rests on the following principles:
“All personal expressions (words, gestures, actions) have
meaning.
Personal expressions are an important means of communicating
meanings, needs, and concerns.
Care partners require a multidimensional lens that seeks
understanding of others’ expressions.
Rather than the current focus on pathology/disease as the root
cause of all actions, words, or gestures, a multidimensional
lens/approach helps partners in care develop a broader and more
comprehensive understanding of what the person with dementia
is subjectively experiencing, which personal expressions they are
communicating, and how best to offer compassionate support”.
(University of Waterloo MAREP 2012).
Encourages further investigation of what the need might be. Care
teams with a genuine understanding of the Need-Driven Behaviour
Model (Algase et al 1996) may be well placed to take into account
the role of both background factors (eg, the person’s history,
personality, neurological, cognitive and health status) and current
or proximal factors (eg, emotional states, physical needs, and the
physical and social environment) in the genesis of behavioural
expressions. Behaviour is conceptualised as the most coherent
response the person is able to make, at any given time, given their
unique set of background and proximal factors (Beattie E, personal
communication, 2016).
I suggest that this paves the way to support a strengths-based
approach.
A general term which may be acceptable if it does relate to
observable signs of distress.
It may be used more specifically (behavioural expression of
pain/boredom/loneliness etc) but this assumes that we have been
able to identify a major contributing factor. Behaviour is often more
likely to be multifactorial in nature.
Similar to above term – it may be appropriate to use if it is
accurate.
Widely used and accepted in research and medical contexts. The
term was created in 1996, at the International Psychogeriatric
Association (IPA) Consensus Conference on Behavioural
Disturbances of Dementia. BPSD is defined as: symptoms of
disturbed perception, thought content, mood or behaviour that
frequently occur in patients with dementia. (Finkel & Burns 1999:
cited in IPA BPSD educational pack, revised in 2002).
BPSD is included in the AA guidelines.
Dementia is recognised as part of the person’s experience but not
necessarily as the ‘cause’ of behaviour.
Serves to emphasise that dementia is a part of the picture and
that the changes the person is experiencing are related to
neurological impairment but are not attributed to dementia per se.
Seeks to recognise change as an inherent part of the experience
of living with dementia (both for the person and their family).
Not that well known. Requires some explanation so that the
guiding principles are understood.
A term which the AA guidelines indicate should not be used.
Authoritarian in tone.
A term which the AA guidelines indicates should not be used.
Implication is that the person is being deliberately or wilfully
challenging. Confrontational in tone.
The term ‘unmet needs’ is often used very loosely. I have seen
numerous instances in which RACF progress notes are written up
as a “behaviour not related to an unmet need” – a fuzzy phrase
and a judgment that is not possible for one person to definitively
determine for another person.
The term is being questioned by people living with dementia,
industry representatives and advocates (with or without lived
experience). For example, see Kate Swaffer’s article The power of
language ( Australian Journal of Dementia Care Feb/March 2015
4(1) .
BPSD carries a risk of ‘diagnostic overshadowing’ where “…all
actions and expressions are attributed to the labelled condition”
(Downs et al 2006 p240, cited in: Dupuis et al 2012 p170).
BPSD is a disease or biomedical framing which normalises
behaviour as part of the disease process. See above for a
description of the potential negative impact of this term.
Though uncommon, there may be instances in which the person’s
behaviour may not indicate or cause distress for the person
themselves – but may cause distress for other people.
The term is not in common usage.
Options The case for using this term The case against