Ass e s s m e n t to o l s
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Detecting pain or distress
in people with dementia: an
appraisal of two strategies
What is the best approach to recognise pain or distress in people with dementia who
cannot express themselves verbally? Jenny T van der steen, Claud regnard, ladislav
Volicer, Nele J a Van den Noortgate and Elizabeth l sampson have critically appraised
two assessment tools: the pain tool PAINAD and the distress documentation tool DisDAT
T
Key
points
he assessment and monitoring of signs
and symptoms is key in palliative care.
However, with severe dementia and
closer to the end of life, communication
problems may complicate the assessment of
symptoms such as pain. As in many other
conditions, the prevalence of (reported) pain
varies considerably in dementia.1
Longitudinal studies in the Netherlands and
the USA have shown that physicians and
nurses report increased frequency of pain in
the months before death and with progressive
dementia.2,3 Pain may result in observable
signs and behaviours indicative of discomfort
or distress. However, discomfort or distress can
also be due to other causes, such as being
bored, agitated, cold or constipated.
Comfort was suggested as an important goal
of care in an international Delphi study that
resulted in the European Association for
Palliative Care’s White Paper on palliative care
■
There are many tools to assess behavioural signs in non-verbal
people with dementia or other cognitive impairment: many to
measure pain and a few to measure (dis)comfort or distress.
■
Item pools overlap substantially, but approaches and formats can
differ widely between the different tools and types of tools.
■
Comparing a pain tool such as the Pain Assessment in Advanced
dementia (PAINAD) and a distress documentation tool such as the
Disability Distress Assessment Tool (DisDAT) shows that signs and
behaviours can be assessed in different ways.
■
Direct comparison of the psychometric properties, feasibility and
effects on patients’ outcomes of different approaches and tools is
needed to build a sound evidence base of the assessment of pain
and other causes of discomfort and/or distress in dementia.
110
for people with dementia.4 Comfort theory
refers to three types of comfort:
● Relief from discomfort when specific needs
are met
● Ease − a state of calm or contentment
● Transcendence − the state in which one rises
above problems or pain.5
Clearly, comfort is more than the absence of
discomfort, problems or pain.
Development of tools
Over the past decades, various tools have been
developed to systematically observe signs of
pain and discomfort and/or distress in people
with moderate-to-severe dementia. In this
article, using two key tools as examples, we
discuss some of the considerations and
controversies involved.
Global (dis)comfort and distress tools
Some tools assess discomfort, comfort or
distress in severe dementia or at the end of life.
Among them is the classical Discomfort
Scale-Dementia Alzheimer Type (DS-DAT)
from 1992, which uses nine items to observe
negative (for example, negative vocalisation)
and positive (for example, relaxed body
language) expressions.6 It has excellent
psychometric properties and has inspired the
development of pain tools such as the
preliminary version of the Pain Assessment in
Impaired Cognition (PAIC)7 and the Pain
Assessment in Advanced Dementia (PAINAD).8
The more recent Disability Distress
Assessment Tool (DisDAT) was developed for
people with severe communication difficulties,
mostly those with severe intellectual disability,
whether or not accompanied by dementia.9,10
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Assessment tools
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It documents a person’s signs and behaviours
when they are distressed and when they are
content or neutral.
Pain assessment tools
At least 28 observational pain assessment tools
are available,11 mostly based on experience
rather than on research evidence. Only
recently have some groups turned to a more
evidence-based approach to develop or
redevelop tools. For example, the Pain
Assessment Checklist for Seniors with Limited
Ability to Communicate (PACSLAC) was
revised on the basis of the increasing evidence
base, and the 31-item PACSLAC-II
outperforms the 60-item original.12
The recently developed PAIC tool abstracted
behaviours from 12 other tools and includes
36 very descriptive items referring mostly to
directly observable behaviour (facial
expressions, verbalisations and vocalisations,
and body movements), not including, for
example, changes in activities of daily living.7
PAINAD and DisDAT
We conducted a content mapping of four pain
and four (dis)comfort and/or distress tools,
including the PAINAD and DisDAT, in which
we classified items in six different domains.
We concluded that item pools used in pain
tools and in (dis)comfort and/or distress tools
overlap substantially.13 Restlessness, for
example, was included in all. Only a few items
were specific to either type of tool, such as
guarding (which means, for example,
protecting a painful part of the body) in pain
tools and serenity in comfort tools.
Nevertheless, widely different approaches
exist, which we illustrate with the tools that, in
our content mapping, were the most different
regarding the use of time: the PAINAD pain
tool and the DisDAT distress tool.
The PAINAD is a five-item tool for a short
bedside assessment of pain by a rater who may
be unfamiliar with the person with dementia
(see Box 1). Item scores of 0, 1 or 2 add up to a
total score between 0 and 10. A score of 2
probably reflects pain while a score of 3 is
specific for pain, but pain may be missed in
some people with lower scores.14 The
assumption is that the observed signs and
behaviours in the population frequently
reflect pain (see Table 1).
The DisDAT, by contrast, assumes that
expressions of distress are highly individual.
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(3)
Box 1. Detection of
and interpretation
principles: one-time assessment
pain illustrated by the
of standardised items,
vocalisation item with
interpretation of quantified
the Pain Assessment in
observations (in later work: cutAdvanced Dementia
off to indicate possible pain;
(PAINAD) tool8
intensity may not be valid).14
Direct bedside assessment as obvious through the item ‘consolability’
■ Responses: ‘0’, ‘1’ or ‘2’ with a few terms included to describe each.
A handout with item definitions describes the response options in
more detail – see example below
Response options for negative vocalisations:
■ 0 = ● None: is characterised by speech or vocalisation that has a
neutral or pleasant quality
■ 1 = ● Occasional moan or groan: occasional moaning is characterised
by mournful or murmuring sounds, wails or laments. Groaning
is characterised by louder than usual inarticulate involuntary
sounds, often abruptly beginning and ending
● Low level speech with a negative or disapproving quality: is
characterised by muttering, mumbling, whining, grumbling or
swearing in a low volume with a complaining, sarcastic or
caustic tone
■ 2 = ● Repeated troubled calling out: is characterised by phrases or
words being used over and over in a tone that suggests anxiety,
uneasiness or distress
● Loud moaning or groaning: loud moaning is characterised
by mournful or murmuring sounds, wails or laments in much
louder than usual volume. Loud groaning is characterised by
louder than usual inarticulate involuntary sounds, often
abruptly beginning and ending
● Crying: is characterised by an utterance of emotion
accompanied by tears. There may be sobbing or quiet weeping
■ For full tool, see appendix to Warden et al, 20038
■ Input
■ Input and interpretation
Box 2. Detection of
principles: compares a wide
distress illustrated by
range of individual signs and
the vocalisation item
behaviours at the time of
with the Disability
assessment and previously,
Distress Assessment
against the baseline of a previous Tool (DisDAT)9
standard of interpretation as
content or distressed
Response options for negative vocalisations:
■ For
full tool, see: www.disdat.co.uk
Although it lists similar signs to the PAINAD
(for example, moaning and groaning – see
Box 1), it allows for individualised expression
of distress (see Box 2). DisDAT assessments are
compared with a baseline assessment of
individual expressions of experiencing distress.
111
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Ass e s s m e n t to o l s
This baseline is built by interviewing an
informal caregiver, or over days by observing
patients when they receive interventions
known to cause distress. The DisDAT does not
have an integrated scoring system.
Table 1 shows the contrasting underlying
assumptions, as well as the possible benefits
and pitfalls, of the two approaches and of
these two particular tools. The PAINAD is
appealing for practice because the assessment
only takes a few minutes, and it is also a good
research tool. It is used throughout the world.
It may improve undertreatment of pain, at the
risk of overtreatment. In contrast, the DisDAT
is the starting point for identifying a cause of
global distress. Evaluation of the DisDAT so far
has been limited to people with Alzheimer’s
dementia in a UK specialist intellectual
disability inpatient setting and three UK
specialist nursing home caring for people with
advanced dementia (‘EMI homes’).10
www.ej p c . e u . c o m
■ In patients with
dementia who are not
able to express
themselves with words,
pain may result in
observable signs and
behaviours indicative of
discomfort or distress
TONY CRADDOCK/SCIENCE PHOTO LIBRARY
What should we assess
and with which tool?
Although both tools support direct (bedside)
observation (as opposed to the recall of a
specific change over a preceding period, such
Table 1. potential benefits and pitfalls of two approaches and two tools for assessing
signs of un-wellbeing in people with moderate-to-severe dementia
PAINAD
DisDAT
Purpose
Detection of pain
Detection of distress regardless of cause (pain or other)
Practical use
Short-term observation (by a person who
need not be familiar with the patient)
Development of a baseline of distress signs (by a person familiar with the patient)
and comparison of the current state with that baseline
Clinical use
Widely used in several countries and in
different cultures throughout the world
•Widely used in the UK in intellectual disability settings (home, residential and inpatient)
• Recommended in the UK by the GMC, BILD and mental health charity Mencap
Research use
Scale with excellent psychometric properties
No integrated scoring system (but additional scoring systems can be used)
Assumptions
Pain is expressed by a limited number
of specific observable signs
Expression of distress caused by pain is highly individual, does not point to a specific cause
and does not change over time
Evidence
• Clinical and research studies, including independent
studies in different settings and countries, support use
as a research tool and as a screening tool in practice15
• Evidence of improved pain16
• Clinical quantitative and qualitative studies in the UK by the tool’s developers have
provided some evidence for its value in identifying distress signs and behaviours9,10
• Carers report value in advocating for the patient9
Potential benefits
for the patient
May increase awareness of pain as a possible cause
of behaviour and trigger concrete follow-up actions
that remedy undertreatment of pain
• May help in patient being seen as a unique individual
• Allows for signs of distress that may not be present in pain scales or other discomfort/
distress scales with fixed items
Potential pitfalls
for the patient
Administration of analgesics despite a different cause
for a positive score (when in fact, there was no pain);
however, that may result in a therapeutic trial, which is
stopped when analgesics are not effective
• Risk that baseline is no longer applicable with changing condition of patient as
dementia progresses
• Baseline assessment relies on availability of a carer who is familiar with the patient
• Does not indicate the cause of distress, and has not been validated to assess pain
Key: BILD = British Institute of Learning Disabilities; DisDAT = Disability Distress Assessment Tool; GMC = General Medical Council; PAINAD = Pain Assessment in Advanced Dementia
112
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as a change in sleep patterns), they may best
fit different situations.
Regardless of which tool is chosen, good
communication between nurses, relatives or
caregivers of the person with dementia
reporting pain or distress, and the physicians
treating these, is needed to improve the
person’s comfort. If needed, assessments with
both types of tool should be followed by a
diagnosis of pain or other causes of
discomfort/distress.
Noting facial and vocal expressions and
body language, and interpreting them after
further examination, stimulates and empowers
professional and family caregivers to find and
treat the cause of distress or pain, which may
also be psychosocial or spiritual (‘total pain’).
What should happen next?
Although no gold standard exists (except for
self-reporting tools, but these can only be used
if patients have the ability to do so), and the
subjective interpretation of behaviour is a
problem with any tool, validity is particularly
important for pain tools, which suggest that
behaviours reflect or are caused by pain.
Therefore, pain tools12 and discomfort/distress
tools urgently need to be tested in a head-tohead comparison in different situations.
Similarly, pain tools need to be tested in
parallel with discomfort and/or distress tools,
and also against probable non-pain distress.
This will tell us whether certain behaviours
can point to specific sources of distress.
The inclusion, in discomfort and/or distress
tools, of items that so far are unique to pain
tools, such as guarding, should be considered.
However, constructing a tool that would have
both excellent specificity and sensitivity from
signs unique to pain may be difficult. A debate
between developers, such as the one that
resulted in this paper, is helpful to inform new
research. Testing different approaches and a
broad item pool – including when they are
applied at the end of life, when assessment
may be the most difficult – for feasibility,
psychometric properties (especially sensitivity
and specificity) and effects on patients’
outcomes should result in optimal tools for
research and for a range of clinical practices.
Declaration of interest
The authors declare that there is no conflict of interest, apart from an
intellectual conflict of interest to define their own tools, which is balanced
by the developers of both tools under study being authors of this article.
Acknowledgement
The authors are grateful to the co-authors of the DisDAT tool for contributing
EUROPEAN JOURNAL OF PALLIATIVE CARE, 2015; 22(3)
Assessment tools
to the discussions around this paper: Dorothy Matthews, Macmillan Nurse for
people with learning disability and Lynn Gibson, Physiotherapy Manager,
Northumberland Tyne and Wear NHS Foundation Trust, Morpeth, UK.
Funding
The writing of this article was supported by a career award from the
Netherlands Organisation for Scientific Research to Jenny T van der Steen
(Vidi grant number 917.11.339). The COST programme (European
Cooperation in Science and Technology) funded travel to meetings in which
the authors mapped and discussed pain and discomfort and/or distress
items of assessment tools as part of its Action TD 1005, ‘Pain Assessment in
Patients with Impaired Cognition, especially Dementia’.
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Jenny T van den Steen, Epidemiologist and Associate
Professor, VU University Medical Center, EMGO
Institute for Health and Care Research, Department
of General Practice & Elderly Care Medicine,
Amsterdam, the Netherlands; Claud Regnard,
Consultant in Palliative Care Medicine, St Oswald’s
Hospice, Newcastle-upon-Tyne, UK; Ladislav Volicer,
Courtesy Full Professor, School of Aging Studies,
University of South Florida, Tampa, Florida, USA;
Nele J A Van Den Noortgate, Geriatrician, Associate
Professor, Department of Geriatric Medicine, Ghent
University Hospital, Belgium; Elizabeth L Sampson,
Senior Clinical Lecturer, Marie Curie Palliative Care
Research Department, Division of Psychiatry,
University College London, and Barnet Enfield and
Haringey Mental Health Trust Liaison Team, North
Middlesex University Hospital, London, UK
113
Copyright © Hayward Medical Communications 2015. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact [email protected]