The impact of pain on the course of ADL functioning in patients with dementia.

BACKGROUND: Understanding if and how pain influences activities of daily living (ADL) in dementia is essential to improving pain management and ADL functioning. This study examined the relationship between the course of pain and change in ADL functioning, both generally and regarding specific ADL functions. METHODS: Participants were Dutch nursing home residents (n = 229) with advanced dementia. ADL functioning was assessed with the Katz ADL scale, and pain with the Dutch version of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC-D). Changes of PACSLAC-D and Katz ADL scores were computed based on the difference in scores between baseline, 3-month and 6-month follow-up. Multivariate linear regression models were used to assess the relationships between change in pain score, change in total ADL score and specific ADL item scores during follow-up. RESULTS: At baseline, residents had a median ADL score of 18 (interquartile range 13-22, range 6-24) and 48% of the residents were in pain (PACSLAC-D ≥ 4). Residents with pain were more ADL dependent than residents without pain. A change in pain score within the first 3 months was a significant predictor for a decline in ADL functioning over the 6-month follow-up (B = 0.10, SE = 0.05, P = 0.045), and specifically, a decline on the items 'transferring' over the 6-month follow-up and 'feeding' during the first 3 months of follow-up. CONCLUSIONS: Pain is associated with ADL functioning cross-sectionally, and a change in pain score predicts a decline in ADL functioning, independent of dementia severity. Awareness of (changes in) ADL activities is clearly important and might result in both improved recognition of pain and improved pain management.

Observational pain assessment in older persons with dementia in four countries: Observer agreement of items and factor structure of the Pain Assessment in Impaired Cognition.

BACKGROUND: Recognition of pain in people with dementia is challenging. Observational scales have been developed, but there is a need to harmonize and improve the assessment process. In EU initiative COST-Action TD1005, 36 promising items were selected from existing scales to be tested further. We aimed to study the observer agreement of each item, and to analyse the factor structure of the complete set. METHODS: One hundred and ninety older persons with dementia were recruited in four different countries (Italy, Serbia, Spain and The Netherlands) from different types of healthcare facilities. Patients represented a convenience sample, with no pre-selection on presence of (suspected) pain. The Pain Assessment in Impaired Cognition (PAIC, research version) item pool includes facial expressions of pain (15 items), body movements (10 items) and vocalizations (11 items). Participants were observed by health professionals in two situations, at rest and during movement. Intrarater and interrater reliability was analysed by percentage agreement. The factor structure was examined with principal component analysis with orthogonal rotation. RESULTS: Health professionals performed observations in 40-57 patients in each country. Intrarater and interrater agreement was generally high (≥70%). However, for some facial expression items, agreement was sometimes below 70%. Factor analyses showed a six-component solution, which were named as follows: Vocal pain expression, Face anatomical descriptors, Protective body movements, Vocal defence, Tension and Lack of affect. CONCLUSIONS: Observation of PAIC items can be done reliably in healthcare settings. Observer agreement is quite promising already without extensive training. SIGNIFICANCE: In this international project, promising items from existing observational pain scales were identified and evaluated regarding their reliability as an alternative to pain self-report in people with dementia. Analysis on factor structure helped to understand the character of the items. Health professionals from four countries using four different European languages were able to rate items reliably. The results contributed to an informed reduction of items for a clinical observer scale (Pain Assessment in Impaired Cognition scale with 15 items: PAIC15).

The Pain Assessment in Impaired Cognition scale (PAIC15): A multidisciplinary and international approach to develop and test a meta-tool for pain assessment in impaired cognition, especially dementia.

BACKGROUND: Over the last decades, a considerable number of observational scales have been developed to assess pain in persons with dementia. The time seems ripe now to build on the knowledge and expertize implemented in these scales to form an improved, "best-of" meta-tool. The EU-COST initiative "Pain in impaired cognition, especially dementia" aimed to do this by selecting items out of existing observational scales and critically re-assessing their suitability to detect pain in dementia. This paper reports on the final phase of this collaborative task. METHODS: Items from existing observational pain scales were tested for "frequency of occurrence (item difficulty)," "reliability" and "validity." This psychometric testing was carried out in eight countries, in different healthcare settings, and included clinical as well as experimental pain conditions. RESULTS: Across all studies, 587 persons with dementia, 27 individuals with intellectual disability, 12 Huntington's disease patients and 59 cognitively healthy controls were observed during rest and movement situations or while receiving experimental pressure pain, respectively. The psychometric outcomes for each item across the different studies were evaluated within an international and multidisciplinary team of experts and led a final selection of 15 items (5x facial expressions, 5x body movements, 5x vocalizations). CONCLUSIONS: The final list of 15 observational items have demonstrated psychometric quality and clinical usefulness both in their former scales and in the present international evaluation; accordingly, they qualified twice to form a new internationally agreed-on meta-tool for Pain Assessment in Impaired Cognition, the PAIC-15 scale. SIGNIFICANCE: Using a meta-tool approach by building on previous observational pain assessment scales and putting the items of these scales through rigorous empirical testing (using experimental as well as clinical pain studies in several European countries), we were able to identify the best items for pain assessment in individuals with impaired cognition. These selected items form the novel PAIC15 scale (pain assessment in impaired cognition, 15 items).

Pain assessment in impaired cognition: observer agreement in a long-term care setting in patients with dementia.

Aim: To study the application of the meta-tool Pain Assessment in Impaired Cognition (PAIC) in a clinical setting in patients with moderate to severe dementia. Materials & methods: Observational study in five Dutch nursing homes, where residents were observed by nurses or nurse-assistants during rest and movement. Prevalence and observer agreement of individual items were examined. Results: An observer agreement of ≥70% was found for most items of the body movement domain and vocalization domain, although prevalence of these behaviors was low (especially during rest). Items of the facial expression domain had a percentage agreement <70%, especially during movement, but with high prevalence of behaviors. Conclusion: The pain assessment in impaired cognition items show promising interobserver and intraobserver agreement in a clinical setting.

Pain Assessment in Impaired Cognition (PAIC): content validity of the Dutch version of a new and universal tool to measure pain in dementia.

OBJECTIVES: Detection and measurement of pain in persons with dementia by using observational pain measurement tools is essential. However, the evidence for the psychometric properties of existing observational tools remains limited. Therefore, a new meta-tool has been developed: Pain Assessment in Impaired Cognition (PAIC), as a collaborative EU action. The aim is to describe the translation procedure and content validity of the Dutch version of the PAIC. METHODS: Translation of the PAIC into Dutch followed the forward-backward approach of the Guidelines for Establishing Cultural Equivalence of Instruments. A questionnaire survey was administered to clinical nursing home experts (20 physicians and 20 nurses) to determine whether the PAIC items are indicative of pain and whether items are specific for pain or for other disorders (anxiety disorder, delirium, dementia, or depression). To quantify content validity, mean scores per item were calculated. RESULTS: Eleven items were indicative of pain, for example, "frowning," "freezing," and "groaning." Fifteen items were considered to be pain-specific, for example, "frowning," "curling up," and "complaining." There were discrepancies between the notion of pain characteristics according to nurses and physicians, especially in the facial expressions domain. DISCUSSION: Within the body movement domain, PAIC items correspond well with the clinical experience of the physicians and nurses. However, items in the facial expressions and vocalizations domains need further study with respect to item reduction. Also, differences were revealed in the notion of pain characteristics between physicians and nurses, suggesting the need for more interdisciplinary education on pain in dementia.

Association between pain, neuropsychiatric symptoms, and physical function in dementia: a systematic review and meta-analysis.

BACKGROUND: Pain, neuropsychiatric symptoms (NPS) and functional impairment are prevalent in patients with dementia and pain is hypothesized to be causal in both neuropsychiatric symptoms (NPS) and functional impairment. As the exact nature of the associations is unknown, this review examines the strength of associations between pain and NPS, and pain and physical function in patients with dementia. Special attention is paid to the description of measurement instruments and the methods used to detect pain, NPS and physical function. METHODS: A systematic search was made in the databases of PubMed (Medline), Embase, Cochrane, Cinahl, PsychINFO, and Web of Science. Studies were included that described associations between pain and NPS and/or physical function in patients with moderate to severe dementia. RESULTS: The search yielded 22 articles describing 18 studies, including two longitudinal studies. Most evidence was found for the association between pain and depression, followed by the association between pain and agitation/aggression. The longitudinal studies reported no direct effects between pain and NPS but some indirect effects, e.g. pain through depression. Although some association was established between pain and NPS, and pain and physical function, the strength of associations was relatively weak. Interestingly, only three studies used an observer rating scale for pain-related behaviour. CONCLUSIONS: Available evidence does not support strong associations between pain, NPS and physical function. This might be due to inadequate use or lack of rating scales to detect pain-related behaviour. These results show that the relationship between pain and NPS, as well as with physical function, is complicated and warrants additional longitudinal evaluation.

Pain management in patients with dementia.

There are an estimated 35 million people with dementia across the world, of whom 50% experience regular pain. Despite this, current assessment and treatment of pain in this patient group are inadequate. In addition to the discomfort and distress caused by pain, it is frequently the underlying cause of behavioral symptoms, which can lead to inappropriate treatment with antipsychotic medications. Pain also contributes to further complications in treatment and care. This review explores four key perspectives of pain management in dementia and makes recommendations for practice and research. The first perspective discussed is the considerable uncertainty within the literature on the impact of dementia neuropathology on pain perception and processing in Alzheimer's disease and other dementias, where white matter lesions and brain atrophy appear to influence the neurobiology of pain. The second perspective considers the assessment of pain in dementia. This is challenging, particularly because of the limited capacity of self-report by these individuals, which means that assessment relies in large part on observational methods. A number of tools are available but the psychometric quality and clinical utility of these are uncertain. The evidence for efficient treatment (the third perspective) with analgesics is also limited, with few statistically well-powered trials. The most promising evidence supports the use of stepped treatment approaches, and indicates the benefit of pain and behavioral interventions on both these important symptoms. The fourth perspective debates further difficulties in pain management due to the lack of sufficient training and education for health care professionals at all levels, where evidence-based guidance is urgently needed. To address the current inadequate management of pain in dementia, a comprehensive approach is needed. This would include an accurate, validated assessment tool that is sensitive to different types of pain and therapeutic effects, supported by better training and support for care staff across all settings.

Interventions targeting pain or behaviour in dementia: a systematic review.

BACKGROUND: Both pain and challenging behaviour are highly prevalent in dementia, and multiple studies show that some of these behaviours may be correlated. Pain, especially in non-communicative patients, can cause challenging behaviour, and treatment of pain therefore may have an effect on behaviour. This review aims to provide a comprehensive overview of the current state of evidence regarding the effectiveness of interventions targeting pain on the outcome behaviour, and interventions targeting behaviour on pain, in dementia. METHOD: PubMed (MEDLINE), EMBASE, COCHRANE, CINAHL, PsychINFO and Web of Science were searched systematically. Studies were included if they focused on an intervention targeting a reduction in the person's distress, pain, and/or behaviour, and included adults with a main diagnosis of dementia. RESULTS: Of a total of 893 potentially relevant publications that were identified, 16 publications met the inclusion criteria and were eligible for further analysis; 6 studies focused on a pain intervention targeting behaviour, 1 study focused on a behavioural intervention targeting pain, and 9 studies focused on an intervention targeting both pain and behaviour. CONCLUSION: Available evidence suggests that (pain) interventions targeting behaviour, and (behavioural) interventions targeting pain are effective in reducing pain and behavioural symptoms in dementia.