Dementia Care

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Sheree Blanch
works in
community
aged care and
is completing
a Bachelor of
Psychology at
the University
of Wollongong.
Contact her at:
Involving people with dementia in research
RESEARCH NEWS
Sheree Blanch reports on the latest published dementia
research from Australia and worldwide
Pain is a common experience for residents
of aged care facilities and can be difficult to
detect in people with dementia. A recent
study looked at the use of analgesics among
residents of six aged care facilities in
Adelaide and Mt Gambier in South
Australia. It compared administration of
painkillers between residents with and
without dementia.
Residents had the opportunity to take
part if they were aged 65 years or older and
able to participate in structured assessments
in English. Exclusion criteria included being
medically unstable (eg experiencing
delirium) or being estimated to have less
than three months to live. A total of 383
residents participated.
Asnapshot of analgesic administration
over the previous 24-hour period was taken,
including both prescription and non-
prescription painkillers for regular or as-
required use. Pain was assessed using a
clinical observation scale as well as a
resident self-report scale. Clinicians spent
five minutes observing the resident and
their pain rating was categorised as ‘no
pain’, ‘low pain’ or ‘moderate/severe pain’.
The resident self-report scale included six
faces showing varying degrees of pain or
discomfort and residents were asked to rate
their worst pain in the previous 24 hours.
The researchers found that more residents
self-reported being in pain than clinicians
observed to be in pain. Significantly more
residents with dementia reported being in
pain than those without dementia and they
also reported significantly higher levels of
pain. However levels of analgesic use were
the same for residents with and without
dementia and use of oxycodone (an opioid
used to treat moderate/severe pain) was
significantly lower in residents with
dementia compared to those without
dementia.
The researchers also found that self-
reported pain was associated with
paracetamol and opioid use in residents
without dementia, but not those with
dementia. For residents in high care,
increasing dementia severity was associated
with use of pain killers.
The researchers suggest that the
difference between self-report and clinician-
observed measures of pain may be due to
the scales measuring different aspects of
pain. They also note that self-reported pain
can be affected by cognitive ability and
mood, which are both lowered in people
with dementia. Additionally, their findings
may indicate that pain in residents with
dementia is under-detected and broader
pain assessments may be needed.
Future research was indicated regarding
the use of analgesics in residents reporting
no pain to assess whether this reflects
effective pain management or over-
prescribing.
Tan ECK, Visvanathan R, Hilmer SN et al (2016)
Analgesic use and pain in residents with and
without dementia in aged care facilities: a cross-
sectional study. Australasian Journal on Ageing
35(3) 180-187.
December 2016/January 2017 Vol 5 No 6 Australian Journal of Dementia Care 37
There has been a push over the
past decade for people living
with dementia to be more
involved in research as
collaborative partners at every
stage of the process. However,
there are a number of
unanswered questions around
how this can best be
implemented.
In response, researchers from
The University of Manchester
and three groups of people
living with dementia (Open
Doors, the Scottish Dementia
Working Group and EDUCATE)
have co-produced a model for
involving and engaging people
with dementia in research,
termed the CO-researcher
INvolvement and Engagement
in Dementia (COINED) Model.
‘Co-researcher’ refers to people
engaged with research whilst
living with dementia and also
symbolises the collaboration,
cooperation and community
partnerships that are developed
when working in this way.
The purpose of the model is to
develop meaningful research
engagement based upon
individual interests and abilities.
It was developed during the
application stage of an
international study on
neighbourhoods and dementia.
The lead researcher met with
each of the groups above, who
led development of the model,
acting as a messenger between
them to exchange ideas and
thoughts. Initial discussions
focused on identifying ways in
which group members would
like to be involved as co-
researchers.
Discussions then focused on:
the potential benefits and
pitfalls of co-researcher
involvement in data collection
and analysis; accessibility of
language and terminology in
final reports; translating
research into practice;
involvement in presenting
research findings in creative,
accessible and meaningful
ways; and, evaluating the
impact, or effectiveness, of the
research and co-researcher
involvement.
The model highlights eight
points of involvement for co-
researchers: ongoing
consultation; designing/piloting
materials; collecting data;
understanding findings; sharing
findings; translating findings
into practice; evaluating impact;
and future research work.
Ongoing training and support
underpins the model.
Akey message of COINED is
ensuring that traditional
research methods and processes
do not limit creativity that could
support and promote
engagement of co-researchers.
The researchers note that co-
researcher involvement does
raise some ethical issues,
including anonymity and
confidentiality. They suggest
that expectations and
responsibilities of co-researchers
should be formalised. A
preliminary study
implementing the COINED
Model is currently underway,
with evaluation planned for
2018-2019. Watch this space.
Swarbrick CM, Open Doors, Scottish
Dementia Working Group, EDUCATE,
Davis K, Keady J (2016) Visioning
change: co-producing a model of
involvement and engagement in
research (innovative practice).
Dementia. Advance online publication
before print 1-8.
Analgesic use and pain in care residents