Dementia Care

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22 Australian Journal of Dementia Care October/November 2016 Vol 5 No 5
argues for a model of ‘relational caring’
involving connection, interdependence,
collectivity and collaboration. It builds a
person’s capacity through support and
nurture, as well as what the caregiver does
and says, and how he or she responds to
the person’s actions.
Alternatives to ‘BPSD’
In 2015 an informal group of dementia care
advocates, comprising Dr Allen Power
(gerontologist) Professor Dawn Brooker
(Director of the University of Worcester
Association for Dementia Studies), Dr
Steven Sabat (Professor of Psychology at
Georgetown University), Daniella
Greenwood (Arcare Strategy and
InnovationManager) andmyself,
exchanged correspondence on a possible
newmeaning for the acronymBPSD, given
that it is a termwell embedded in the
literature. The concept was to improve the
caregiver response to the behaviours
observed, by emphasising their bio-
psychosocial aspects.
Arange of options was considered, with
Allen and Daniella (2015) suggesting a
move away from the words ‘psychological’
and ‘behavioural’. Steven (2015) proposed
the word ‘personal’, because what might
distress one person may not trouble
another. I suggested that we use the words
‘Basic Personal Signs of Distress’ (Bryden
2015).
I argued that a sign is what is observed,
whereas a symptom is what is felt and told
to the clinician. Therefore it is more
appropriate to refer to what is observed as
a sign, and then to look for an underlying
explanation. This observation can become
the basis for action to address any
potentially distressing causes, where the
caregiver is looking to environmental
factors, including their own personal style
and their knowledge of what might be of
concern to the person with dementia.
By firstly regarding observations as non-
verbal expressions of unmet need, and
then ensuring that any such needs are met,
a non-pharmacological approach becomes
the first line of response.
Basic Personal Signs of Distress
We need to think about dementia in a
different way, to adjust our lens, so that we
can see the behaviour of people with
dementia as personal expressions of need.
I believe that there is potential for harm
and suffering in homes, acute care and
residential care, if non-verbal
communication by people with dementia
is called BPSD, and then regarded as
inevitable symptoms of dementia, rather
than as signs of communication of needs,
feelings and understandings within the
care environment. There is then a risk of
such communication being ignored, or of
the use of medication, rather than non-
pharmacological approaches.
Certainly, there does not appear to be
sufficient evidence to date to link all
behavioural change to pathology, and
some evidence that other factors are
important, such as the environment and
the personal traits of both the person and
the caregiver.
Therefore I propose Basic Personal Signs
of Distress as an alternative meaning for
the acronymBPSD, for use in care settings,
which would reflect the signs of
behavioural change and their underlying
meanings.
By using this term, caregivers would be
seeking meaning in behaviour and
responding to any unmet needs. By
retaining the acronym, this proposal
accepts the value of the existing substantial
body of clinical, biomedical and
psychosocial research around the globe.
However, it would prompt family, in-
home, respite and residential caregivers to
look for non-pharmacological approaches
as a first response to non-verbal
communication.
References
Alzheimer’s Australia Language Guidelines (2014)
Accessed at:
files/NATIONAL/documents/language-guidelines-
full.pdf.
American Psychiatric Association (2013)
Diagnostic and Statistical Manual 5.
Brooker D, Latham I (2016) Person-centred
dementia care. London: Jessica Kingsley
Publishers.
Brooker D (2015) personal communication,
22 September.
Brooker D (2011) BPSD viewpoint. Journal of
Dementia Care.
Bryden C (2002) A person-centred approach to
counselling, psychotherapy and rehabilitation of
people diagnosed with dementia in the early
stages. Dementia 1(2) 141-156.
Bryden C (2015) personal communication,
26 September.
Burns K, Jayasinha J, Tsang R, Brodaty H (2012)
Behaviour management – a guide to good
practice. Available: at
for_Family_Carers.pdf (Accessed 27/05/16).
Cerejeira J, Lagarto L, Mukaetova-Ladinska M
(2012) Behavioural and psychological symptoms
of dementia. Frontiers in Neurology3(73).
Downs M, Clare L, Mackenzie J (2009)
Understandings of dementia: explanatory models
and their implications for the person with dementia
and therapeutic effort. In J Hughes, S J Louw, S R
Sabat (2009) Dementia: mind, meaning, and the
person. London: Jessica Kingsley Publishers.
Dupuis SL (2016) Relational understandings of
personal expressions. brainXchange webinar,
January 2016.
Dupuis SL, Wiersma E, Loiselle L (2012)
Pathologising behaviour: meanings of behaviours in
dementia care. Journal of Aging Studies26 162-173.
Feast A, Orrell M, Russell I, Charlesworth G, Moniz
Cook E (2016) The contribution of caregiver
psychosocial factors to distress associated with
behavioural and psychological symptoms in
dementia. International Journal of Geriatric
Psychiatry.
Finkel S (2000) Introduction to behavioural and
psychological symptoms of dementia (BPSD).
International Journal of Geriatric Psychiatry 15 S2-
S4.
Finkel S, Burns A (2000) Behavioural and
psychological symptoms of dementia: a clinical
and research update. International
Psychogeriatrics 12(S1) 9-12.
Frankl V (1985) Man’s search for meaning. New
York: Washington Square Press 38.
International Psychogeriatric Association (2002)
Behavioural and psychological symptoms of
dementia (BPSD). Educational pack. Available at:
(Accessed 27/05/16.)
Kales H, Gitlin L, Lyketsos C (2015) Assessment
and management of behavioural and
psychological symptoms of dementia. British
Medical Journal.
Kitwood T (2009) Dementia reconsidered: the
person comes first. Berkshire: Open University
Press.
LeDoux J (2012) Rethinking the emotional brain.
Neuron 73(4) 653-676.
LeDoux J (2014) Comment: what’s basic about
the brain mechanisms of emotion? Emotion
Review 6(4) 318-319.
Markwell H (2016) Loaded meanings: the narrative
of behaviour. Australian Journal of Dementia Care
5(3) 12-16.
Mayer S, Granvik E, Minthon L, Nagga K (2014)
Improved quality of life by active intervention with
the Swedish BPSD registry. Alzheimer’s and
Dementia 10(4) 139-140.
Mitchell GM, Dupuis SL, Kontos PC (2013)
Dementia discourse: from imposed suffering to
knowing other-wise. Journal of Applied
Hermeneutics June, Article 5, 1-19.
Power A, Greenwood D (2015) personal
communication, 11 September.
Prior J, Abraham R, Nicholas H, Chan T,
Vanvlymen J, Lovestone S, Boothby H (2016) Are
premorbid abnormal personality traits associated
with behavioural and psychological symptoms in
dementia? International Journal of Geriatric
Psychiatry.
Sabat S (2015) personal communication, 22
September.
Williams P (2016) Viewpoint, Australian Journal of
Dementia Care 5(1) 5.
Christine Bryden, former science advisor to the
Australian Prime Minister, was diagnosed with
dementia in 1995 and since then has written four
books: Who will I be when I die?; Dancing with
dementia ; Nothing about us, without us (Jessica
Kingsley Publishers); and Before I forget(Penguin
Australia). Christine was a member of the
Alzheimer’s Disease International Board (2003-
2006). She is a member of Alzheimer’s Australia
Dementia Research Foundation Scientific Panel,
Queensland’s state-wide Dementia
Clinical Network Steering Committee and the
Cognitive Impairment Advisory Group of the
Australian Commission on Safety and Quality
in Health Care. In 2016 she was made a
Member of the Order of Australia for her
advocacy work. Contact her at: