The utility of PAINAD in assessing pain in a UK population with severe dementia

RESEARCH ARTICLE

The utility of PAINAD in assessing pain in a UK population
with severe dementia
Alice Jordan1, Julian Hughes1,2, Mani Pakresi3, Sarah Hepburn3 and John T. O’Brien2

1Northumbria Healthcare NHS Foundation Trust, UK2Institute for Ageing and Health, Newcastle University, UK3Tees, Esk and Wear NHS Trust, UKCorrespondence to: Dr A. Jordan, E-mail: [email protected]

Copyr

Objective:Studies suggest that pain is under-recognized and under-treated in those with severe dementia.Identifying pain is the first step in its effective management. Few studies have investigated the utility ofbehavioural pain tools in those with advanced dementia.

Methods:Participants were nursing home residents with advanced dementia who were observed on threeoccasions using a pain assessment tool (PAINAD). Following further assessment, an appropriatemanagement plan was formulated for those thought to be in pain. Participants who scored abovethe cutoff (two) on the PAINAD scale, but were felt not to be in pain, formed the false positive group. Thepain and false positive groups were reassessed at 1 and 3 months.

Results: Seventy-nine participants completed the study, with 39 participants scoring above two on thePAINAD. Of these, only 13 were assessed as being in pain. The other 26 participants who scored abovethe cutoff on PAINAD were not felt to be in pain. Instead, their behaviour had a psychosocialexplanation, often to do with a lack of understanding as to what was happening to them. The sensitivityof PAINAD was 92%. In those with pain, a significant decrease was demonstrated in the PAINAD scoreson intervention following treatment for pain (p¼ 0.008).

Conclusions: PAINAD is a sensitive tool for detecting pain in people with advanced dementia, but has ahigh false positive rate, frequently detecting psychosocial distress rather than pain. PAINAD can be usedto assess whether pain management strategies have been successful. Copyright # 2010 John Wiley &Sons, Ltd.

Key words: dementia; distress; pain; pain assessmentHistory: Received 22 May 2009; Accepted 7 January 2010; Published online 22 July 2010 in Wiley Online Library(wileyonlinelibrary.com).DOI: 10.1002/gps.2489

Introduction

The principles of palliative care should apply to patientswith dementia (Hughes et al., 2005). In the moreadvanced stages of dementia, when the person can nolonger communicate, recognition of pain becomescrucially important.

It is a major concern that there may be manypatients with severe dementia who have undetectedand untreated pain. Ferrell et al. (1990) studied 217nursing home residents with a mean mini-mental stateexamination (MMSE; Folstein et al., 1975) score of12.1. Sixty-two per cent of the participants complained

ight # 2010 John Wiley & Sons, Ltd.

of pain; however, 17% were unable to complete any ofthe scales used. In further research, involving geriatricoutpatients with a mean MMSE of 16.6, it was found atinterview that 32% reported pain (Shega et al., 2004).Given, therefore, that there is evidence of pain on asignificant scale in people with dementia, the concernabout those who cannot report it suggests thedevelopment of effective means to recognize andevaluate pain in this vulnerable population is of greatimportance (Herr et al., 2006).

There are conceptual and methodological issuesassociated with behavioural observation tools usage (Jordanet al., 2007). Recent reviews of pain behavioural assessment

Int J Geriatr Psychiatry 2011; 26: 118–126.

PAINAD in severe dementia 119

tools (Herr et al., 2006; Zwakhalen et al., 2006a) havedemonstrated that the lack of behaviours solelyindicating pain may lead to pain being over-identified.Pain behaviours are not unique to pain (Snow andShuster, 2006) and individuals may manifest pain in apersonal way (Malloy and Hadjistavropoulos, 2004;Regnard et al., 2007). A recent review was unable torecommend one tool for use across populations andsettings (Hadjistavropoulos et al., 2007). Despite thesepotential problems, the concern about the possibleunder-recognition and under-treatment of pain in thispopulation has increased the drive to develop suitableassessment tools (Zwakhalen et al., 2006a). Despite theneed for caution, the use of behavioural tools in thispopulation forms an important part of assessing pain(Herr et al., 2006; Zwakhalen et al., 2006a). Weassessed the utility of one particular pain assessmenttool, the Pain Assessment in Advanced Dementia scale(PAINAD, Warden et al., 2003).

The PAINAD tool was developed from categoriesand behaviours used in the discomfort scale forpatients with dementia of the Alzheimer type (DS-DAT; Hurley et al., 1992) and the face, legs, activity,cry, consolability scale (FLACC; Merkel et al., 1997). Itwas also based on a literature review and expertconsensus. It comprises five items: breathing, negativevocalization, facial expression, body language andconsolability. Each item is rated on a three-point scalewith specific descriptions provided for levels of pain.During its development, pain scores on the PAINADwere found to be lower during pleasant compared toadverse activities and the scores differed before andafter pain was treated (Warden et al., 2003).

PAINAD has been found to be user friendly andrequires minimal training (Lane et al., 2003). The toolcorrelated well with DS-DAT and visual analogue scalesand while its internal consistency was only moderate,high levels of inter-rater reliability were attained(Warden et al., 2003). But the sample size used todevelop PAINAD was small and the pain scores tendedto cluster around zero (Zwakhalen et al., 2006a). Furtherwork has demonstrated PAINAD to have fair inter-raterreliability with good internal consistency (Gibson et al.,2004; Schuler et al., 2007), good psychometric qualitiesin terms of homogeneity, reliability and validity(Zwakhalen et al., 2006b) and to show improvementin scores following administration of analgesia (Basleret al., 2006). This tool has not previously been assessed ina UK population of people with severe dementia. Thepurpose of this study, therefore, was to investigate itsutility in the identification and management of pain insevere dementia in UK nursing home residents.

Copyright # 2010 John Wiley & Sons, Ltd.

Method

The research was carried out in one National HealthService (NHS) continuing care unit for people withsevere dementia and three private elderly mentallyinfirm (EMI) nursing homes in North Tyneside. Thesehomes, selected for their convenience, are typical ofnursing homes in this region for people with dementia.Local research ethics approval was obtained. All peopleentering the study had an established clinical diagnosisof dementia, with advanced disease as shown by aclinical dementia rating (CDR; Hughes et al., 1982)score of three. They were unable to communicateverbally in a reliable or consistent manner. There wereno specific exclusion criteria.

Participant selection

Nursing homes were identified and the project wasdiscussed with the home management, explained tostaff and, if available, discussed with a relatives’ group.Potential participants were identified using the CDR.None of the participants had capacity to consent. Inline with capacity legislation governing England andWales (Mental Capacity Act 2005, Sections 30–34),personal consultees (usually the nearest relative) wereidentified and, where this was not possible, anominated consultee (usually a solicitor) wasapproached and their views about the personparticipating in the research were sought. Withouttheir approval, the person was excluded. GeneralPractitioners (GPs) were also contacted to informthem that the person was included in the project. Thepatient’s nursing, hospital medical and psychiatricnotes or (in their absence) GP notes were reviewedprior to the study commencing. The notes werereviewed in order to

(a) c
onfirm the inclusion criteria were satisfied (thatthe diagnosis of dementia subtype fulfilled theDSM IV (1994) classification or, for dementia withLewy bodies (DLB), fulfilled the consensus guide-lines for the diagnosis of dementia with Lewybodies (McKeith et al., 1996));
(b) n
ote basic demographic details such as age, date ofadmission to current home and ethnicity;
(c) r
ecord past medical history, particularly co-mor-bidities that could potentially be painful;
(d) r
ecord dementia type and date of diagnosis and (e) r ecord all prescribed medication at the commence-
ment of the study.


120 A. Jordan et al.

Observations

The participants in the study were observed by twoobservers on three occasions for approximately5 minutes at a time of rest, a meal time and a timeof intervention (e.g. bathing). If different times had tobe used, the same observation times for the particularparticipant were used when observations wererepeated. At each observation PAINAD was completed,either by the researcher (AJ) or by a nurse from thehome. (The observer not completing PAINADcompleted a new distress tool called DisDAT (Regnardet al., 2007). Nurses were trained by the researcher inthe use of both instruments. The results of thecomparison of PAINAD and DisDAT will be reportedelsewhere.) Each observer was blinded to the resultbeing recorded by the other observer. After theobservation, the cause of any observed behaviourwas discussed with nursing staff to determine whetherit might reflect pain or some other cause. Participantswere examined (by AJ) if there was doubt about theexistence of or cause of pain. Where it remaineddifficult to ascertain the cause of the behaviours seen,the observation was repeated and other staff membersor medical professionals were consulted.

In summary, the decision about whether or not aparticipant’s behaviour indicated the presence of painwas determined by

(a) a

Cop

review of medical, psychiatric and nursing notes;
(b) i nformation gleaned from discussion with relatives
during the assent procedure;
(c) j udgements based upon observations on three
occasions by a doctor specializing in palliativemedicine (AJ) and a nurse familiar with the patient(AJ had been qualified for about 10 years duringthis study, with 6 years’ experience post-member-ship of the Royal College of Physicians, whichincluded about 19 months of geriatric medicinefollowed by 4 years specializing in palliative medi-cine);

(d) a
discussion after the observations between thedoctor and the nurse;
(e) a
physical examination if necessary and appropri-ate;
(f) r
epeated observations if required; and (g) f urther discussion with other nursing and medical
professionals if necessary.

All participants who were assessed as being in pain atany observation continued into the intervention stageof the protocol (P group). Those who were notassessed as being in pain but had scored significantly

yright # 2010 John Wiley & Sons, Ltd.

on PAINAD at any observation (a score greater than 2)also continued into the next stage (FP group). Thosewho were not felt to be in pain and had not scoredsignificantly on PAINAD (a score equal to or less than2) left the research at this point (NP group). The use of2 as the cutoff score for potential pain was derived fromthe initial research where the mean PAINAD scores (�Standard Deviation) at a time of no stimulation were1.3 (�1.3), 1.0 (�1.3) during pleasant activity and 3.1(�1.7) during intervention (Warden et al., 2003).

Intervention

A decision was made concerning the management oftheir pain for those participants in the P group. Thiswas made by the researcher in conjunction with thenursing home staff, as well as the GP or consultantpsychiatrist as necessary. If the decision required inputoutside the experience of the researcher, an appro-priate opinion was sought. Changes in medicationremained under the control of the clinician normallyresponsible for the patient, either a GP or consultantpsychiatrist, who were then kept informed by letter ofthe results of further observations. A discussion tookplace with the nursing staff as to the likely cause of thehigh score for those in the FP group. Any potentialalleviating measures for the putative distress were alsodiscussed. Interventions started as soon as possibleafter the observations, once a decision had been madeconcerning the appropriate treatment or approach tobe used. Interventions for both groups were individualand they continued for as long as seemed necessary orfeasible during the study, with recommendations to thenormal clinician as to whether or not they shouldpersist thereafter.

Re-assessment

Clinical re-assessment by the researcher occurredweekly to monitor the effects of any treatments. At1 month, the participants in the P group and the FPgroup were re-assessed using PAINAD (and DisDAT),again in three different circumstances in the same wayas previously described.

At 3 months from the original assessment, there wasfurther re-assessment of both the P and FP groupsusing the PAINAD tool (and DisDAT). This was againin three different circumstances in the same manner asbefore. In addition, a further review of notes andmedication took place. If there was evidence of on-going pain, this information was referred back to the



participant’s GP or consultant psychiatrist for furthermanagement.

Statistical analysis

All statistics were analysed using SPSS-14. A poweranalysis was carried out prior to the study usingprevious data on PAINAD. This suggested that asample size of 25 would be sufficient. Normality of datawas assessed using the Kolmonogorov–Smirnov test ofnormality, as well as examining histograms andnormality curves. Changes in scores obtained usingPAINAD were analysed using the Wilcoxon signedranks test since the data were non-parametric. TheFriedman test was used to compare PAINAD scores atthe initial observation. The differences between themean scores for each of the groups (P, FP and NP) wereanalysed using the Kruskal–Wallis test and analysedfurther using the Mann–Whitney exact test. Type oneerror was accounted for using the Bonferroni method,with a threshold of significance set as p< 0.017 (i.e.p¼ 0.05/3).

Figure 1 Recruitment and results of initial assessments.
Results
Four homes in North Tyneside, in the North East ofEngland, participated in the study and provided a totalpossible population of 192 nursing home residentswho were screened for the study. Table 1 shows basicdemographics and diagnoses.

Figure 1 depicts recruitment and the results of theinitial assessment.

Sixty-one residents were excluded because theirCDR score was less than three. Assent was not obtainedfor 41 potential participants, either because the next ofkin could not be contacted and assent was problematicor because of the next of kin’s reluctance. From the

Table 1 Demographics and diagnosis for 79 participants (sd¼ standarddeviation)

Female (%) 72Male (%) 28Mean age (years) 82 (sd¼8.14; range: 64–98)Alzheimer’s disease (%) 53Vascular dementia (%) 29Mixed vascular andAlzheimer’s disease (%)

11

Dementia with Lewybodies (%)

4

Mean time sincediagnosis (months)

71 (sd¼35.2; range: 15–192)

Mean time resident inhome (months)

36 (sd¼26.6; range: 2–115)


baseline assessments, 13 participants were assessed tobe in pain (16%). Twenty-six participants had scoredsignificantly (above two) on PAINAD (33%), but thebehaviours observed were felt to be caused by reasonsother than pain. The remaining 40 participants (51%)were assessed as not being in pain and had not scoredabove two on PAINAD. One participant, assessed to bein pain but who did not score greater than two at anyassessment, was included in the pain group and wascounted as the only false negative. Thus, 12 partici-pants, out of the 13 with pain, scored above 2 onPAINAD, giving a sensitivity of 92%; and 40participants, out of the 66 without pain, scored 2 orbelow, giving PAINAD a specificity of 61%.

The P group

There was a variety of underlying causes for the painidentified in each participant, so management strat-egies were tailored to the particular participant, assummarized in Table 2. The majority of the painidentified was musculoskeletal. Both non-pharmaco-logical and pharmacological strategies were employedto treat the different pains.


Table 2 Cause and treatment of pain in 13 participants with severe dementia

Participantnumber

Cause of pain Treatment used

1 Contractures Regular paracetamol2 Dental caries Tooth extraction/filling/paracetamol if required3 Arm tension owing to anxiety Massage4 Pain on sitting on hard surfaces Pressure area care on washing5 Rheumatoid arthritis of knee Topical non-steroidal anti-inflammatory drug6 Contractures Regular paracetamol7 Cellulitis and DVT of leg Antibiotics/Cocodamol/Tinzaparin8 Arthritis/previous hip fracture Slow-release tramadol9 Arthritis/immobility Regular paracetamol10 Arthritis Change in time of analgesia11 Hand contracture Procyclidine (started by participant’s GP)12 Pain on sitting on hard surfaces Not left sitting on hard surfaces13 Pain on cleaning nails Acute incident to which staff alerted

Table 3Differences between baseline and 1month as measured by PAINADduring three different periods of observation in those considered to have pain(the P Group, n¼ 13) with severe dementia

Baseline score mean (SD) 1 month score mean (SD) Wilcoxon

At rest 1.25 (2.30) 0.77 (1.09) Z¼�0.53 p¼0.6Eating 0.67 (1.07) 1.38 (1.94) Z¼�0.99 p¼0.32Intervention 5 (2.63) 3.23 (2.52) Z¼2.65 p¼ 0.008


As shown in Table 3, when the participants were re-assessed at 1 month after the change in management ofthe pain was instigated, there was a significant changein scores recorded during the observation of anintervention.

However, change in scores during the observation ofthe participants at rest and during eating was not signi-ficant. Similarly, there was no significant change seen inany of the scores between 1 and 3 month observations.

The FP group

Thirty-three per cent of the participants scored greaterthan two on PAINAD, but were not felt to be in pain.There was a variety of causes responsible for the higherscores where pain was not felt. Much of this behaviourseemed to reflect the participant not understanding thesituation and becoming anxious, frightened, frustratedor angry. Some participants seemed distressed by theenvironment, often because of the behaviour of otherresidents. Specific management strategies were notsuggested for the participants within this group. Onrecognizing the level of distress in these participants,however, the nursing staff often developed responsivestrategies.


As Table 4 shows, a significant difference in thescores obtained at baseline and 1 month were seenbetween the observations at rest and the observationsof an intervention, but no difference was seen betweenthe scores obtained during observations of eating.Once again, there was no significant difference betweenthe 1 and 3 month scores.

Comparisons between groups

Further comparisons were carried out between theinitial scores obtained in the P, FP and NP groups. Theinitial mean scores are shown in Table 5.

Statistical analyses demonstrated that the NP groupscore at the time of interventions was significantly lessthan the P and FP scores for the interventionobservation (p< 0.001). Although the mean P groupPAINAD score during observation of interventionswas greater than that obtained in the FP group, this wasnot statistically significant (p¼ 0.066). Using a Fried-man test there was a significant difference in PAINADscores (x2 ¼ 35.6, p< 0.001) between test situations ofrest (PAINAD mean¼ 1.75), eating (1.78) and inter-vention (2.46).


Table 4Differences between baseline and 1 month as measured by PAINAD during three different periods of observation in those not considered to havepain, but scoring over 2 on PAINAD (the FP Group, n¼ 26), with severe dementia

Baseline score mean (SD) 1 month score mean (SD) Wilcoxon

At rest 1.30 (1.68) 0.23 (0.58) Z¼�2.12 p¼ 0.03Eating 1.7 (1.43) 1.12 (1.58) Z¼�0.45 p¼ 0.65Intervention 3.19 (1.94) 2.0 (2.09) Z¼�2.02 p¼ 0.04

Table 5 Mean (with standard deviation) PAINAD scores at baseline observation in different states—rest, eating, intervention—shown in three groupsaccording to assessment of presence or absence of pain and score over or under two on PAINAD in people with severe dementia

Pain (P) group (n¼13) False positive (FP) group (n¼ 26) No pain (NP) group (n¼40)

Rest 1.25 (2.3) 1.27 (1.68) 0.33 (0.53)Eating 0.67 (1.07) 1.7 (1.43) 0.38 (0.63)Intervention 5 (2.63) 3.19 (1.94) 0.73 (0.78)


Distribution of scores in the P group

To evaluate the commonest scoring behavioursdocumented for the pain group, the assessments thatscored greater than two were collated. The analysisdemonstrated that the lowest scoring item on thePAINAD was the breathing item. None of theparticipants who were felt to be in pain scored 2 fortheir breathing (i.e. had noisy laboured breathing orCheyne–Stokes respiration). There was a relativelyeven spread of scores for the other behaviours itemizedon PAINAD.

Discussion

Behavioural pain assessment tools have been suggestedas a suitable method to identify pain in those withsevere dementia who cannot express their painverbally. In the absence of a consensus, regarding adefinitive recommendation of any particular tool(Hadjistavropoulos et al., 2007), we have studiedone behavioural pain assessment tool, PAINAD, toevaluate its utility in assessing pain in people withsevere dementia in a UK population. Many of theprevious studies of PAINAD have not focused solely onpeople with severe dementia (Gibson et al., 2004;Zwakhalen et al., 2006b; Leong et al., 2006; Hutch-inson et al., 2006; Van Iersel et al. 2006; Schuler et al.,2007). We have been able to confirm the previousconcern (Warden et al., 2003; Van Iersel et al. 2006)that the breathing item in PAINAD, which was scoredvery infrequently in any group in the current study,lacks utility. In the remainder of this discussion weshall focus on the ability of PAINAD to measure pain


and response to treatment, the apparently lowprevalence of pain in this population and the existenceof false positives, before highlighting some of thelimitations of the study.

Detection of pain and response to treatment

In this study, PAINAD had a sensitivity of 92%,suggesting that if a person with severe dementia is inpain, this tool is highly likely to detect it. However,the high proportion of false positive results indicatesthe importance of seeking other potential causes of theparticular behaviour. We proved that PAINAD candemonstrate the effectiveness of interventions to treatpain. The PAINAD score for those with pain wassignificantly less following interventions. As has beendemonstrated in previous studies of PAINAD too(Warden et al., 2003; Basler et al., 2006), the literaturehighlights that behavioural pain tools can be used forthis purpose (Pasero and McCaffery, 2005; Herr et al.2006).

Prevalence of pain

In the current study, 16% of residents with severedementia were felt to be in pain during at least one ofthree observations. This prevalence was not as high asmight have been expected from the literature. Wewould highlight three possible explanations. First, eachobservation lasted for 5 min, but pain could have beenexperienced at other points in the day. One possibility,therefore, would be to ask staff to recall behavioursobserved over time, but this would be subject to recallbias. Secondly, it may be that the experience of pain is



altered in severe dementia. The neuropathologicalchanges that occur in Alzheimer’s disease and vasculardementia have been postulated to affect pain pathways(Farrell et al., 1996; Scherder et al., 2003) with clinicalevidence for an altered pain response provided by casereports in Alzheimer’s disease sufferers (Fisher-Morrisand Gellatly, 1997). However, a recent functionalmagnetic resonance imaging (fMRI) study failed toshow an effect on pain pathways in patients with mildAlzheimer’s disease (Cole et al., 2006). Finally, most ofthe data regarding pain in patients with dementia comefrom research using self-reporting of pain. Since theconcordance between self-report and observation ofpain has been demonstrated to be either low ormoderate (Koho et al., 2001; Monina et al., 2006), itmay be that the observation techniques used in thisstudy cannot tap into the subjective experience of painrevealed by self-report.

False positives

Despite the good sensitivity, the specificity of PAINADin this population was only 61%, with 33% of thesample appearing as false positives. We could notdemonstrate a significant difference between the scoresobtained for those in the P group and those in the FPgroup. Similarly, another behavioural pain assessmenttool, Doloplus-2, also identifies discomfort fromcauses other than somatic pain (Holen et al., 2007).Hence, as Herr has commented: ‘the identification ofpain indicators using a standardized tool is only onestep in a complex diagnostic process’ (Herr et al.,2006). If there are no behaviours that solely indicatepain (Regnard et al., 2007), it is likely that otherassessment tools, consisting of lists of putative painbehaviours, also identify behaviours not caused bypain. There was a significant difference betweenbaseline and 1 month scores at rest and on interventionin this group. This was felt to be caused by the nursingstaff recognizing the level of distress in theseparticipants and developing responsive strategies.

A recent consensus statement regarding painassessment, in those unable to communicate, high-lighted that most pain assessment tools cannot beconsidered to represent definitive indicators of pain(Hadjistavropoulos et al., 2007). In the UK, the NICE-SCIE guideline states: ‘If a person with dementia hasunexplained changes in behaviour and/or shows signsof distress, health and social care professionals shouldassess whether the person is in pain, using anobservational pain assessment tool if helpful. However,the possibility of other causes should be considered’(NICE-SCIE, 2006).


Limitations of the study

Of those who satisfied the inclusion criteria (n¼ 131),40% were not included in the final sample. This dropout rate is a potential limitation on the generalizabilityof the results, in particular because the P groupcontained only 13 participants. Those for whom it wasnot possible to obtain assent could have been frailer, ifthis can be inferred from the difficulty finding closerelatives. But we have no way of knowing the paincharacteristics of this group.

It might be considered that a potential limitation ofthe study was that the interventions were notcontrolled. However, this was not an interventionstudy. The interventions for each participant wereunique, so that a suitable control would have beenimpossible. But, in any case, assessment of theintervention as such was not the aim of our study.

As described, the observations involved two obser-vers using different observation tools but blinded toeach other’s results. However, following the interven-tion, the observers were not blinded to whether or notan intervention had occurred and they were aware ofthe type of intervention. It could be that theyanticipated an improvement. However, the improve-ment that was noted showed a good deal of statisticalsignificance and was in accord with previous studies.Furthermore, as will be reported elsewhere, theconcordance in terms of the blinded comparisonbetween the two scales adds weight to the claim that theimprovement following the intervention was a genuineobservation.

Finally, it might be argued that the decisionconcerning whether or not someone was in paincould be contested. This is true. But this is partlybecause there simply is no gold standard for theassessment of pain. The rationale for using the variousitems that made up our ‘gold standard’ is just that theseare routine and sensible ways to assess pain. Weacknowledge that this is just one approach, but wethink it is a reasonable one since a clinical assessment–particularly one as broad as this–is more likely torepresent a gold standard than using another ratingscale or some surrogate measure such as use ofanalgesia or electrophysiology.

Conclusion

We have shown, in a UK population, that PAINAD is asensitive tool with regard to detecting pain; however,the high false positive rate means that it often detectspresumed psychosocial distress. This may also be true


Key Points

� PAINAD is a sensitive tool for detecting pain inpeople with severe dementia who cannot com-municate.

� However, PAINAD also detects psychosocialdistress apparently not caused by pain.

� PAINAD can be used to monitor the response totreatment of pain in people with severe dementia.

� The assessment of pain in people with severedementia needs to be broad, may usefullyincorporate an observation tool such as PAINAD,but needs to be open to the possibility thatbehaviour that looks as if it might be caused bypain may in fact reflect psychosocial distress.


of other behaviour observation pain assessment tools.We have also demonstrated that PAINAD can be usedto assess whether pain management strategies havebeen successful. Hence, in keeping with national andother guidelines, PAINAD and similar screening tools,whilst useful as part of a fuller assessment of pain,should not be regarded as definitive in the detection ofpain in people with severe dementia.

Conflicts of interest

None declared.

Acknowledgements

The authors wish to thank the participants, theirfamilies, the nursing staff and other formal carers,without whose help this study would not have beenpossible. They also thank Dr Nick Steen and MichaelFirbank for statistical advice and Dr Claud Regnard, DrLouise Robinson and Dr Richard Walker for adviceduring the project, which was funded through aTeaching and Research Fellowship awarded to AJ byNorthumbria Healthcare NHS Foundation Trust.Deficiencies in the study remain the authors’ soleresponsibility. The study was supported by North-umbria Healthcare NHS Foundation Trust.

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The utility of PAINAD in assessing pain in a UK population with severe dementia

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