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.

Implementation of a Stepwise, Multidisciplinary Intervention for Pain and Challenging Behaviour in Dementia (STA OP!): A Process Evaluation.

BACKGROUND: A stepwise, multidisciplinary and multicomponent intervention (called STA OP!) was implemented in Dutch nursing home units, which included a comprehensive multidisciplinary team training. A cluster-randomised controlled trial showed that the intervention reduced symptoms of pain and challenging behaviour. OBJECTIVES: To describe the experiences around the implementation of the intervention; to examine the extent to which the STA OP! intervention was delivered and implemented as intended (at the level of the team, and the individual resident/professional); and to understand factors influencing the implementation process. METHODS: A process evaluation was performed using a mixed-methods design encompassing several data sources. Quantitative data (i.e. from the written evaluations by healthcare professionals, management, and the research database) were analysed using descriptive statistics. Qualitative data (i.e. semi-structured interviews, notes, completed intervention forms, and written evaluations) were analysed according to the principles of thematic analysis. The implementation process and the influencing factors were categorised according to the i) organisational level, ii) the team level, and iii) the level of the individual resident/professional. RESULTS: In total, 39.2% of the residents with pain and/or challenging behaviour were treated following the stepwise approach of the STA OP! intervention. The training manual and forms used were found to be relevant and feasible. Factors inhibiting the implementation process at the i) organisational level concerned instability of the organisation and the team (e.g. involvement in multiple projects/new innovations, staff turnover/absence of essential disciplines, and/or high workload). At the team level (ii), we found that presence of a person with a motivational leadership style facilitated the implementation. Also, interdisciplinary cooperation through the design/setting of the multidisciplinary training, securing the intervention by use of clear agreements, and written reporting or transfers facilitated implementation. At the individual level (iii), perceived value of the stepwise working method, and enhanced awareness facilitated the implementation. CONCLUSION: Although the intervention was not implemented as planned, the intervention empowered healthcare professionals and increased their awareness of the signals of pain and challenging behaviour. Future implementation of the intervention should start on units with a motivational leader, and specific features of the organisation and the team should be considered to facilitate implementation, e.g. stability, support, and shared focus to change.

Change in quality of life after a multidisciplinary intervention for people with dementia: A cluster randomized controlled trial.

OBJECTIVE: The objective of this study was to examine whether implementation of a stepwise multicomponent intervention (STA OP!) for challenging behavior and pain affects quality of life (QoL) of nursing home residents with moderate to severe dementia after 3 and 6 months. METHODS: A cluster randomized controlled trial was conducted in 12 nursing homes. Both control (n = 140) and intervention group (=148) received training, the intervention group was also treated using the STA OP! INTERVENTION: At baseline, 3 and 6 months QoL was assessed using the 6 QUALIDEM domains applicable to moderate and severe dementia. Linear mixed models were used to compare changes in QoL domains between the 2 groups over time. RESULTS: After both 3 and 6 months, there was no change, and no difference in change, between the 2 groups in the domains Care relationship, Positive affect, Negative affect, and Social relations. Between 0 and 3 months, a positive effect was seen in the domain Restless tense behavior with a regression coefficient of ß: 0.95 (95% confidence interval [CI], 0.36-1.54). Between 3 and 6 months, a negative effect was seen on the domain Restless tense behavior ß: -0.98 (95% CI, -1.60 to -0.36) and a positive effect in the domain Social isolation, ß: 0.64 (95% CI, 0.12-1.17). CONCLUSIONS: The stepwise intervention STA OP! affects the QUALIDEM domains in different ways: there was a lowering of Restless tense behavior in the short term, which reverted back to the initial level in the longer term, and a lowering of Social isolation in the longer term.

Effects on pain of a stepwise multidisciplinary intervention (STA OP!) that targets pain and behavior in advanced dementia: A cluster randomized controlled trial.

BACKGROUND: Pain in nursing home residents with advanced dementia remains a major challenge; it is difficult to detect and may be expressed as challenging behavior. STA OP! aims to identify physical and other needs as causes of behavioral changes and uses a stepwise approach for psychosocial and pharmacological management which was effective in improving challenging behavior. AIM: To assess whether implementation of the stepwise multidisciplinary intervention also reduces pain and improves pain management. DESIGN: In a cluster randomized controlled trial (Netherlands National Trial Register NTR1967), healthcare professionals of intervention units received the stepwise training, while training of the control group focused on knowledge and skills without the stepwise component. Observed and estimated pain was assessed at baseline and at 3 and 6 months post-intervention. Logistic generalized estimating equations were used to test treatment and time effects. SETTING/PARTICIPANTS: A total of 21 clusters (single nursing home units) in 12 Dutch nursing homes included 288 residents with advanced dementia (Global Deterioration Scale score 5, 6, or 7): 148 in the intervention and 140 in the control condition. RESULTS: The multilevel modeling showed an overall effect of the intervention on observed pain but not on estimated pain; Pain Assessment Checklist for Seniors with Limited Ability to Communicate-Dutch version, mean difference: -1.21 points (95% confidence interval: -2.35 to -0.06); Minimum Dataset of the Resident Assessment Instrument pain scale, mean difference: -0.01 points (95% confidence interval: -0.36 to 0.35). Opioid use increased (odds ratio = 3.08; 95% confidence interval: 1.08-8.74); paracetamol use did not (odds ratio = 1.38; 95% confidence interval: 0.71-2.68). CONCLUSION: STA OP! was found to decrease "observed" pain but not estimated pain. Observing pain-related behavior might help improve pain management in dementia.

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study.

BACKGROUND: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). MATERIAL AND METHODS: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. RESULTS: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. CONCLUSION: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

Orofacial Pain during Mastication in People with Dementia: Reliability Testing of the Orofacial Pain Scale for Non-Verbal Individuals.

Objectives. The aim of this study was to establish the reliability of the "chewing" subscale of the OPS-NVI, a novel tool designed to estimate presence and severity of orofacial pain in nonverbal patients. Methods. The OPS-NVI consists of 16 items for observed behavior, classified into four categories and a subjective estimate of pain. Two observers used the OPS-NVI for 237 video clips of people with dementia in Dutch nursing homes during their meal to observe their behavior and to estimate the intensity of orofacial pain. Six weeks later, the same observers rated the video clips a second time. Results. Bottom and ceiling effects for some items were found. This resulted in exclusion of these items from the statistical analyses. The categories which included the remaining items (n = 6) showed reliability varying between fair-to-good and excellent (interobserver reliability, ICC: 0.40-0.47; intraobserver reliability, ICC: 0.40-0.92). Conclusions. The "chewing" subscale of the OPS-NVI showed a fair-to-good to excellent interobserver and intraobserver reliability in this dementia population. This study contributes to the validation process of the OPS-NVI as a whole and stresses the need for further assessment of the reliability of the OPS-NVI with subjects that might already show signs of orofacial pain.

Effects of a Stepwise Multidisciplinary Intervention for Challenging Behavior in Advanced Dementia: A Cluster Randomized Controlled Trial.

OBJECTIVES: To assess whether implementation of a stepwise multicomponent intervention (STA OP!) is effective in reducing challenging behavior and depression in nursing home residents with advanced dementia. DESIGN: Cluster randomized controlled trial. SETTING: Twenty-one clusters (single independent nursing home units) in 12 nursing homes within the Netherlands. PARTICIPANTS: Residents with advanced dementia (N = 288). INTERVENTION: Staff working on intervention units received comprehensive stepwise multidisciplinary training; the control condition received training on general nursing skills, dementia management and pain without the stepwise component. MEASUREMENTS: The primary outcome was agitation (Cohen-Mansfield Agitation Inventory (CMAI)). Secondary outcomes included psychotropic medication use, neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home version (NPI-NH)), and symptoms of depression (Cornell Scale for Depression in Dementia (CSDD), Minimum Dataset Depression Rating Scale (MDS-DRS)). Measurements were made at baseline and 3 and 6 months after the intervention. Multilevel analysis and logistical generalized estimating equations were used to test treatment and time effects. Analysis was on an intention-to-treat basis. RESULTS: Multilevel modeling revealed an overall effect of the intervention on challenging behavior and depression; CMAI (mean difference -4.07 points, 95% confidence interval = (CI) = -7.90 to -0.24, P = .02), NPI-NH (mean difference -3.57 points, 95% CI = -6.30 to -0.84, P = .005), CSDD (mean difference -1.59 points, 95% CI = -2.49 to -0.69, P < .001), and MDS-DRS (mean difference -0.96 points, 95% CI = -1.40 to -0.52, P < .001) scores were significantly lower in the intervention condition than the control condition. There was a significant reduction of antidepressants (N06A) (OR = 0.32); nonsignificant reductions of antipsychotics (N05A), anxiolytics (N05B), and hypnotic-sedatives (N05C) (odds ratios = 0.69 to 0.90). CONCLUSION: For nursing home residents with advanced dementia and challenging behavior, providing staff with comprehensive training in behavioral management, resulted in improved behavior and less psychotropic medication use.

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.

Behavioral pain indicators in people with intellectual disabilities: a systematic review.

UNLABELLED: People with intellectual disabilities (IDs) have a higher risk of painful medical conditions. Partly because of the impaired ability to communicate about it, pain is often undertreated. To strengthen pain assessment in this population, we conducted a systematic review to identify behavioral pain indicators in people with IDs by using Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English, 4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8) an association between observable behavior and pain experience. From 527 publications, 27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral pain indicators, motor activity, facial activity, social-emotional indicators, and nonverbal vocal expression were the most frequently reported. Most of the behavioral pain indicators are reported in more than 1 study and form a possible clinical relevant set of indicators for pain in people with IDs. Determination of a behavioral pattern specific for pain, however, remains a challenge for future research. PERSPECTIVE: This review focuses on categories of behavior indicators related to pain in people with IDs. The quality of evidence is critically discussed per category. This set of indicators could potentially help clinicians to recognize pain in this population, especially when unique individual pain responses are also identified.

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.

The implementation of the serial trial intervention for pain and challenging behaviour in advanced dementia patients (STA OP!): a clustered randomized controlled trial.

BACKGROUND: Pain (physical discomfort) and challenging behaviour are highly prevalent in nursing home residents with dementia: at any given time 45-80% of nursing home residents are in pain and up to 80% have challenging behaviour. In the USA Christine Kovach developed the serial trial intervention (STI) and established that this protocol leads to less discomfort and fewer behavioural symptoms in moderate to severe dementia patients. The present study will provide insight into the effects of implementation of the Dutch version of the STI-protocol (STA OP!) in comparison with a control intervention, not only on behavioural symptoms, but also on pain, depression, and quality of life. This article outlines the study protocol. METHODS/DESIGN: The study is a cluster randomized controlled trial in 168 older people (aged >65 years) with mild or moderate dementia living in nursing homes. The clusters, Dutch nursing homes, are randomly assigned to either the intervention condition (training and implementation of the STA OP!-protocol) or the control condition (general training focusing on challenging behaviour and pain, but without the step-wise approach). Measurements take place at baseline, after 3 months (end of the STA OP! training period) and after 6 months.Primary outcome measures are symptoms of challenging behaviour (measured with the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory-Nursing Home version (NPI-NH)), and pain (measure with the Dutch version of the Pain Assessment Checklist for Seniors (PACSLAC-D) and the Minimum Data Set of the Resident Assessment Instrument (MDS-RAI) pain scale). Secondary outcome measures include symptoms of depression (Cornell and MDS-RAI depression scale), Quality of Live (Qualidem), changes in prescriptions of analgesics and psychotropic drugs, and the use of non-pharmacological comfort interventions (e.g. snoezelen, reminiscence therapy). DISCUSSION: The transfer from the American design to the Dutch design involved several changes due to the different organisation of healthcare systems. Specific strengths and limitations of the study are discussed. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NTR1967.