Dementia pain assessment tool

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Assessment Tools DSA provides advice and recommendations where behaviours are impacting the care of a person living with dementia. Lifestyle and Social History Questionnaire Knowing a person's life story helps DSA understand the person, what is important to them, their likes and dislikes. Lifestyle and Social History Questionnaire Behaviour Assessment Form This form is to be completed when a significant incident takes place. Behaviour Assessment Form Behaviour Frequency Chart This chart can be used to monitor and record the frequency of a specific behaviour.

Behaviour Frequency Chart Abbey Pain Scale People with dementia may not be able to verbally communicate that they are in pain. The latter was provided during the study at all times and with minimal or no interruption.

Standard care is believed to elicit nociceptive pain and also offers a real world context as encountered in the residential aged care setting, and with less potential for recall bias from raters. Residents had various types of dementias and pain diagnoses covered a wide spectrum of medical conditions.

Also, pain measurements were performed on a weekly basis for a period of 13 consecutive weeks to portray a clearer clinical picture about the frequency and status of pain symptoms in these subjects. Our study design is observational in nature where no intervention e. Hence unless an adequately powered, tightly controlled clinical trial is employed with an intervention targeted towards these behavioral problems, the confounding effect is inevitable to occur.

Rater-related limitations also include the fact that only a small number of raters completed the assessments, and there were a number of novice raters. The impact of the latter was evaluated by comparing the results with and without the inclusion of their assessments, this had a negligible impact on the results. Although it is also desirable to conduct an additional multivariate analysis, we consider the current analysis of variables provides sufficient information to meet the objectives of the study.

This study demonstrates that ePAT has psychometric properties which make it suitable for use in people with moderate to severe dementia. It has proven validity and reliability compared to APS, which is the current gold standard for pain assessment in people with dementia who cannot self-report pain in Australia.

We believe it offers a significant advantage in that the facial expression assessment is automated, providing an objective and reproducible evidence of the presence of pain, in conjunction with non-facial features. Lastly, it has been designed for use by healthcare professionals and lay carers alike.

The authors want to thank aged care staff, residents, and their families for their involvement in the project. National Center for Biotechnology Information , U. Journal of Alzheimer's Disease. J Alzheimers Dis. Published online Aug Prepublished online Aug 9. Hughes a.

Jeffery D. Alba Malara, Handling Associate Editor. Author information Article notes Copyright and License information Disclaimer.

Accepted Jun All rights reserved. This article has been cited by other articles in PMC. Abstract Pain is common among people with moderate to severe dementia, but inability of patients to self-report means it often goes undetected and untreated. Keywords: Automated, dementia, ePAT, facial recognition technology, FACS, older people, pain assessment, psychometric evaluation, reliability, validation.

Open in a separate window. The electronic Pain Assessment Tool ePAT new tool Purpose: The ePAT is a multimodal pain scale designed to assist clinicians and health care workers assess pain in people with moderate to severe dementia at the point of care. Image 1. Face detection and tracking in the ePAT App during a clinical encounter.

Image 6. Total score screen of the ePAT App depicting to pain intensity score. Image 2. Image 3. Image 4. Image 5. Design and setting The study was a prospective observational study which involved residents from three metropolitan aged care homes ACHs in Perth, Western Australia.

Protocol plan The study was conducted over a week period in each of the three participating ACHs. Statistical analysis Standard descriptive statistics were used to summarize the study participants and number of assessments conducted frequencies and percentages for categorical variables, means, standard deviations, and ranges for continuous variables. Table 2 Resident demographics and pain characteristics. Pain assessment data Pain assessments for residents were undertaken during routine care while at rest or with movement.

Table 3 Pain assessment data for the three participating aged care homes. Table 4 Number of assessments completed by each assessor. Discriminant validity Discriminant validity was assessed by comparing ePAT scores to APS for the same resident at rest and then after movement, e. Table 5 Numbers shown in the cells are the number of assessments percentage of the APS category.

Clin Interv Aging 8 , — Pain , — J Am Med Dir Assoc 7 , — J Am Med Dir Assoc 13 , — Medical Care 43 , — Pain Res Manag 12 , — Clin J Pain 27 , — Nurs Res 56 , 34— A systematic review.

Med Clin Barc , — Clin J Pain 16 , 54— Gerontology 55 , — Psychosom Med 73 , — J Pain Symptom Manage 31 , — BMC Geriatr 6 , 3. Res Social Work Prac 20 , — Nat Rev Neurol 8 , — However, in the 2 most frequent forms of dementia, namely AD and VD, there is no indication for a reduced but instead for an augmented vulnerability to pain.

In the community, more than half of the patients with dementia experience daily pain. Of particular interest is orofacial pain, which is related to poor oral health care. There is some evidence that pain in dementia is related to a variety of behavioural symptoms, such as depression, verbal abuse, wandering, agitation, and aggression. The one that was of relatively good quality showed a relation between pain and functional impairment.

Competent pain assessment is a necessary prerequisite for good pain management and ideally considers several pain dimensions, namely intensity, location, affect, cognition, behavior, and social accompaniments.

In case of patients with dementia, many cognitive and linguistic barriers prevent individuals from focusing on all these aspects. Those responsible for pain management must be adequately informed at the least about the presence and intensity of pain. Thus, limited and one-sided pain assessment is almost the rule in individuals with dementia, leading to deleterious consequences for their pain treatment or lack thereof.

The gold standard in pain assessment is the self-report either in less standardized forms as asked in interviews or in more standardized forms as requested in pain scales. Referring to the Mini Mental State Examination, 29 a cutoff score of 18 was suggested to divide individuals into those still able and those no longer able to self-report pain.

The frequently used visual analogue scale, which requests the matching of a line length to the experienced intensity of pain, is far beyond the cognitive level of most patients even in early stages of dementia.

However, even minimal knowledge in the patients about the requests associated with answering certain simple scales does not always guarantee valid self-report of pain. Therefore, from a certain degree of cognitive and linguistic impairment on, it is advised to add an observer tool to self-report assessment, which takes on the leading role more and more in later stages of dementia.

Thus, besides direct pain testing, neuropsychological screening of the cognitive status should become routine to become sensitive for the transition from possible to invalid self-report. There is general agreement that observer ratings of pain organized in short scales are necessary in moderate and severe forms of dementia to get valid and reliable information about the presence and intensity of pain.

In addition, there is also wide agreement that 3 behavioral domains mirror pain-related states, which are namely facial responses, vocalization, and body movement or body posture.

Survey of the most frequently used observational scales according to Zwakhalen et al. The problems associated with these scales include poor or unproven reliability, lack of evidence for validity, and untested sensitivity of change. Also, implementation in practice is poor. However, even if the optimal tool has not yet been developed, it has turned out that as soon as any attempt of systematic pain assessment by such scales was implemented in nursing homes, pain management improved.

The imperfect state of development of most observer-rating scales has inspired an American and a European research group to develop meta-tools out of the existing observer-rating scales, which try to make use of only the best possible items available. These attempts have become obtainable in 2 scales, namely Pain Intensity Measure for Persons with Dementia available in English 27 and PAIC Pain Assessment in Impaired Cognition; available in English and 8 other languages 18 , 21 , 41 , 68 and await further testing.

A special challenge is pain assessment in end-of-life care, which requires special instruments with more focus on psychological distress. A few instruments are yet become available. Experimental methods such as pain psychophysics eg, pain threshold and tolerance threshold , brain imaging, neurophysiologic recordings eg, SSEP and R-III reflex , and facial response coding are not easily used in the clinical context for pain assessment and are mainly reserved for research on individuals with dementia.

Thus, we now also know that the brain changes associated with dementia do not reduce pain to a degree, which make further attempts of pain management unnecessary. By contrast, most forms of dementia are even associated with enhanced nociception and pain processing. The technical attempts of finding solutions to the problem of automatic pain recognition are meanwhile numerous and seem to be ideal for assisting pain measurement in noncommunicative nonverbal individuals.

The momentarily available solutions may help to assess the immobile, bedridden patients under ideal conditions of illumination and no visual overlap, who show prototypical pain behavior without masking by the expression of other emotions.

Furthermore, the machine learning algorithms applied for pain recognition are mainly trained on young individuals, which already let wrinkles invalidate this form of computer-driven pain diagnostics. For progress towards automatic pain recognition, interdisciplinary collaboration nurses, physicians, psychologists, computer scientists, and engineers is mandatory.

Complexities of pain in older persons with dementia necessitate a comprehensive pain management approach that encompasses more than pharmacotherapy. For years, clinical practice guidelines have recommended incorporation of nonpharmacologic approaches as part of the pain management plan for older adults, 2 but recent concern related to opioid use for chronic pain has increased attention to the effective use of nondrug approaches.

Although evidence is growing, the majority of evidence for nondrug pain interventions has been conducted in cognitively intact older adults because those with dementia are typically excluded from most randomized control trials RCTs. Evidence is accumulating on nondrug interventions to manage behavioral and psychological symptoms of dementia BPSD , but few studies focus specifically on pain as the outcome of interest. Exercise has been shown to be an effective nondrug intervention for pain in older adults; thus, it is reasonable to assume that it may be beneficial for pain in those with dementia.

Psychological interventions have a strong evidence base in adult samples, and growing evidence in older adults; 10 however, research is sparse on use in dementia.

Impairments in memory, language, executive function, visuospatial skill, and other processes impact the ability to effectively engage in these pain interventions, such as cognitive-behavioral therapy, mindfulness approaches including biofeedback and relaxation training , and self-regulatory approaches including biofeedback, relaxation training, and hypnotherapy.

It is likely that these interventions are not feasible in those with moderate and severe dementia. Recent reviews of nonpharmacologic interventions for the treatment of BPSD, including agitation and disruptive behavior that have both been associated with pain, provide some guidance.

In a review of systematic reviews evaluating RCTs, Dyer et al. Functional analysis-based interventions, such as behavior management and music therapy, demonstrated statistically significant improvements in BPSD. A second review of reviews conducted by Legere et al.

Pieper et al. A recent integrative review examined the state of science on nonpharmacological intervention use for pain for older adults in long-term care facilities, many of which have dementia. Finally, a recent review of RCTs focused on complementary and alternative interventions to treat pain and agitation in dementia found massage, touch, and human interaction and presence are effective in reducing pain and agitation.

It is difficult to know whether any of the nonpharmacologic pain interventions are superior to another or when and how their use should be tailored to the individual's unique needs and characteristics. Studies are needed that use strong designs, include valid and reliable pain behavior outcomes, examine impact of dose of intervention, and establish feasibility, applicability, and cost-effectiveness for use in the long-term care setting.

The overall use of analgesics in nursing home patients is increasing worldwide. Although limited, the available evidence suggests that paracetamol is effective and safe, and therefore represents an appropriate first choice for analgesic treatment in this population. Long-term use of nonsteroidal anti-inflammatory drugs NSAIDs is associated with increased risk of potentially serious adverse events, and should be avoided.

Opioid analgesics are commonly prescribed for noncancer acute or chronic pain in people with dementia, and their use in this population has rapidly increased over the past decades. It has become increasingly prescribed to people with dementia because it is marketed as an easily administered transdermal patch formulation at low equianalgesic dose levels. Oxycodone and morphine are the only other opioids that have been tested in randomized controlled trials including people with dementia, and all trials were limited by a low number of participants.

No clinical trials have investigated the safety and efficacy of adjuvant analgesics such as antidepressants and antiepileptic drugs for treating pain in dementia. The risk—benefit relationship may therefore be skewed in this population, and studies of adjuvant analgesics for treating pain are needed to make evidence-based treatment decisions in this population.

Several important unresolved issues remain in relation to current guidelines and practice for the use of analgesic drugs in people with dementia.

No evidence-based guidelines exist for treating pain in people with dementia; instead, general guidelines for the geriatric population are applied to this group despite lack of evidence for efficacy and safety in people with dementia. Clinical practice for pain management in people with advanced dementia also varies widely both within and across nations. Although several studies show that the overall use of analgesics is increasing, we do not know whether the right patients receive appropriate analgesic treatment in the correct dose.

Recent studies show that not all those who receive analgesics have pain; similarly, many still have pain despite receiving analgesic treatment. Similarly, for those with no registered pain, we do not know whether they have been successfully treated, or whether treatment is even indicated. Therefore, a trend towards increased prescribing of analgesics in people with dementia does not equate improved quality of care.

As with any patient with persistent pain, development of a comprehensive treatment plan is essential and, in the population of dementia, in particular, an interdisciplinary approach is key to establishment of a multimodal pain management plan.

An interdisciplinary approach includes comprehensive assessment, managing polypharmacy and pharmacotherapy, psychological evaluation and support, physical rehabilitation, and interventions and interventional procedures.

Organizations invested in an interdisciplinary team approach to managing the problems associated with dementia are best prepared to gather information that informs the treatment plan and engages individuals most likely to be effective in implementing the pain management plan.

Challenges of creating a functional interdisciplinary team need to be addressed by the organization to promote use of nondrug therapies and establish reimbursement for multiple providers and nondrug therapies for pain management.

Pain is a challenge for persons with dementia, their loved ones, health care professionals, and society. Although in the past decade better assessment procedures including observational pain instruments have been developed and studied, implementation in practice is still disappointing.

Good pain management is unfortunately also not implemented, which this is partly due to a lack of good studies on both pharmacological and nonpharmacological management. To effectively assess and manage pain in this vulnerable group, interdisciplinary collaboration nurses, physicians, psychologists, computer scientists, and engineers is essential. This article provides the latest state of the literature on this topic. Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

National Center for Biotechnology Information , U. Journal List Pain Rep v. Pain Rep. Published online Dec Author information Article notes Copyright and License information Disclaimer. E-mail address: ln. Published by Wolters Kluwer Health, Inc. This is an open access article distributed under the Creative Commons Attribution License 4. This article has been cited by other articles in PMC. Abstract The ageing revolution is changing the composition of our society with more people becoming very old with higher risks for developing both pain and dementia.

Key Points Pain in dementia is very prevalent and difficult to assess. Epidemiology 1. The demographic revolution puts pain in dementia in the spotlight In the 20th century, the world population has seen an incredible growth in life expectancy. What do we know of pain in the different subtypes of dementia?

To know what the effects of pain are in different subtypes of dementia, several things have to be taken into account: 1 The more general problems that arise in most type of dementias, such as difficulty in abstract thinking and verbal communication, and 2 the location of the neuropathology.

Prevalence of pain in dementia In the community, more than half of the patients with dementia experience daily pain. Consequences of pain in dementia There is some evidence that pain in dementia is related to a variety of behavioural symptoms, such as depression, verbal abuse, wandering, agitation, and aggression. Pain assessment in patients with dementia Competent pain assessment is a necessary prerequisite for good pain management and ideally considers several pain dimensions, namely intensity, location, affect, cognition, behavior, and social accompaniments.

Self-report The gold standard in pain assessment is the self-report either in less standardized forms as asked in interviews or in more standardized forms as requested in pain scales. Observer ratings There is general agreement that observer ratings of pain organized in short scales are necessary in moderate and severe forms of dementia to get valid and reliable information about the presence and intensity of pain. Table 1 Survey of the most frequently used observational scales according to Zwakhalen et al.

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