Harvey Chasen, 76, has lived in a nursing home for two years. He has advanced Alzheimer's disease and cannot communicate verbally. (This case is a composite based on our clinical experience.) He requires help with all activities of daily living and spends a good part of each day rolling himself through the facility in his wheelchair. His wife, Martha, visits once a week. He has severe arthritis in both knees, for which he receives cortisone injections every three months; he is also given acetaminophen (Tylenol and others) on an as-needed basis. Now, about a month after his most recent injection, his nurse notices a change in his behavior. Each morning, he is reluctant to get into his wheelchair: he groans during the transfer, clenches his fists, and flexes his arms up to his chest. He has begun to push caregivers away or to grab their arms during care. He hits other residents, and is no longer wheeling himself around. Recognizing that such behaviors may be caused by unrelieved pain, his nurse decides to perform an evaluation using the Pain Assessment in Advanced Dementia (PAINAD) scale.
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Watch a video demonstrating the use of the Pain Assessment in Advanced Dementia (PAINAD) scale and other pain-assessment tools at http://links.lww.com/A251.
A Closer Look
Get more information on why it's important for nurses to screen for pain in patients with dementia, as well as why the PAINAD scale is a good tool for doing so.
Try This: Pain Assessment in Advanced Dementia Scale
This is the tool in its original form. See page 67.
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THE PAINAD SCALE
The PAINAD scale is a behavior-observation tool developed for use in patients whose dementia is so advanced that they can't verbally communicate the fact that they're in pain. Designed for easy use, it requires a brief training-and-observation period. In developing the PAINAD scale, researchers successfully measured pain (as determined by comparing the results against those obtained using the Discomfort Scale for Dementia of the Alzheimer Type [DS-DAT]) after a two-hour training session; they assessed patients for five minutes in three different settings (at rest, during a pleasant activity such as watching a movie, and during an unpleasant activity such as using the bathroom).1 That pilot study revealed that the PAINAD scale “successfully measured pain in individuals with advanced dementia, who were unable to use any of the available pain assessment tools that have been used with cognitively impaired individuals.”
The PAINAD scale was adapted from the DS-DAT and the Face, Legs, Activity, Cry, Consolability Scale (the latter of which is used to assess pain in infants). The Try This tool, Assessing Pain in Older Adults with Dementia, on page 68, details the use of the PAINAD scale, which was designed to assess the following five areas for possible indicators of pain in patients with severe dementia:
- breathing: labored breathing or hyperventilating
- vocalization: moaning or crying
- facial expression: frowning or grimacing
- body language: clenching fists or pushing away caregivers
- consolability: an inability to be comforted
Each item is scored on a scale of 0 to 2. When scores from the five indicators are totaled, the patient's score can range from 0 (no pain) to 10 (severe pain). The intention was to create a 0-to-10 pain-rating scale for people with advanced dementia that relies on observation and is similar to the commonly used 0-to-10 pain-rating scale that relies on the patient's own report of pain. (See “Using Pain-Rating Scales with Older Adults,” June); to watch the portion of the online video discussing those scales, go to http://links.lww.com/A252.
The PAINAD scale's value is twofold. First, in combination with other assessments (for example, monitoring known sources of pain such as acute or chronic conditions), the PAINAD scale can assure the clinician that behaviors are (or are not) pain related. Second, because behaviors that might indicate pain are not the same in all people with dementia, it's useful to evaluate a patient's actions in a consistent manner using a single tool. This helps the provider to recognize the patient's unique behavioral patterns and thereby detect changes. It's important to remember that “pain profiles” will differ—some people may exhibit behaviors indicative of pain that are not included on the PAINAD scale. Some behaviors not included are changes in interpersonal interactions (becoming withdrawn, decreasing social interactions), changes in activity patterns (such as in sleeping or eating), and changes in mental status (increased confusion). It's therefore important for clinicians to recognize a patient's pain profile, which will aid in the timely treatment of underlying conditions. (See Why Assess for Pain in Patients with Advanced Dementia? at left.2,3)
ADMINISTERING THE PAINAD SCALE
An important first step for clinicians in assessing pain in people with dementia is becoming aware of its possible indicators; some commonly ignored behaviors in this population indicate pain. Regular use of the PAINAD scale, along with other recommended assessments (such as monitoring any behavioral changes and attempting to obtain the patient's report of pain4), will increase nurses' confidence in using this tool, even though a range of behavioral cues may indicate pain in patients with severe dementia. (To watch the portion of the online video in which nurses use the PAINAD scale with a patient, go to http://links.lww.com/A253.
Mr. Chasen's pain is scored twice with the PAINAD scale. His nurse observes him first at rest, before breakfast, sitting in his wheelchair. She notes that his breathing is normal and assigns a score of 0 to this item. He remains quiet and calm, and his face is inexpressive, so she assigns a 0 to three indicators: vocalizations, consolability, and facial expression. But his shoulders and upper body appear tense, and he fidgets with his clothes. For this, he earns a score of 1 in the body language category.
Later in the morning, Mr. Chasen's nurse observes him as he is being transferred back to bed. (Although it's appropriate for nurses to use the PAINAD scale while providing care, it's not recommended in certain instances. For example, when a nurse assists in a transfer, it may be difficult for her or him to observe and score the patient's facial expression.) During the transfer his breathing appears occasionally labored, and he has short periods of hyperventilation; therefore, his nurse gives him a score of 1 in the breathing category. He moans softly several times, earning a score of 1 in the vocalizations category. His face remains inexpressive, so he is given a score of 0 in the facial expressions category, but he receives a score of 2 in body language after he violently strikes out with clenched fists as the nurses transfer him. Finally, because he's not reassured or distracted when a nurse touches him on the arm and speaks softly to him, he receives a score of 2 in consolability.
Challenges that may arise. It may be difficult to determine whether a particular behavior is related to pain or to something else, such as anxiety or being too cold. Some behaviors may be inconsistent or very subtle; detecting subtle changes may require nurses to get to know the patient better by observing her or him at different times over the course of several days. (For a more in-depth discussion, see “Behaviors Associated with Dementia,” A New Look at the Old, July 2005.)
SCORING AND INTERPRETING THE RESULTS
Using the definitions provided in the tool, raters assign a score (ranging from 0 to 2) for each of the five areas assessed. These five scores are then totaled; the final score will range from 0 to 10, with 0 indicating no pain and 10 indicating severe pain. No interpretation of the intermediate scores is provided. Any item scored as 1 or 2 indicates that the person is in some type of pain or discomfort and should be followed up with additional assessments.
The creators of the PAINAD scale have given no specific guidance on the treatment of pain according to each score. The soundness of using a 0-to-10 behavioral scale to rate the severity of pain has not been established.5 At the most general level, a score of 1 would indicate mild pain and a score of 10 would indicate severe pain. Mild pain (a total score of 1 or 2) warrants comfort measures (such nonpharmacologic approaches as repositioning or distraction, or a mild analgesic such as acetaminophen); moderate-to-severe pain (a total score of 5 to 10) warrants stronger analgesia, such as an opioid, as well as comfort measures.
The American Society for Pain Management Nursing's Task Force on Pain Assessment in the Nonverbal Patient recommends a comprehensive, hierarchical approach that includes the following five steps: obtain the patient's report of pain, look for potential causes of pain, observe the patient's behavior, obtain surrogate reports of pain or ask others about changes in the patient's behaviors and activities, and attempt an analgesic trial to try to reduce or eliminate pain indicators.4, 6
Mr. Chasen's total score on the PAINAD scale is 1 at rest and 6 during transfer. The higher score on the second assessment is not surprising; often, more pain-related behaviors are seen during movements involved in bathing, getting out of bed, or dressing.7 But both scores indicate pain and indicate the need for further assessment and a more aggressive pain-treatment plan. Because Mr. Chasen has a known history of chronic pain caused by arthritis, his analgesic regimen is reviewed. When acetaminophen is given and his pain continues, he is given liquid morphine 5 mg by mouth. Mr. Chasen's pain-related behaviors are alleviated and his mobility improves significantly at a dosage of 5 mg every six hours. At this point, he is switched to long-acting morphine, 15 mg every 12 hours by mouth, for round-the-clock comfort.8 The PAINAD scale is used every four to six hours to monitor the effects of his new medication regimen. (Indeed, even if it is unclear whether a patient is in pain, analgesics can be tried. If PAINAD scale scores improve after new medication is given, it can be assumed that pain was present.)
Since pain-related behaviors have been seen during Mr. Chasen's care, the caregivers evaluate and modify their approach to care. All caregivers are asked to consider the following questions.
- Is Mr. Chasen handled gently?
- Is he given warnings before he's touched or moved?
- Is he kept covered and warm while care is given?
- Are you attending to his behavioral cues and not rushing through activities?
- Do you stop care activities when he resists them?
A comprehensive list of pain-minimizing caregiving approaches related to dressing, moving, shaving, and other care activities can be found in Talerico and colleagues' article “Psychosocial Approaches to Prevent and Minimize Pain in People With Dementia During Morning Care” in the July–September 2006 issue of Alzheimer's Care Quarterly (now called Alzheimer's Care Today).7 For an excerpt from that article, go to http://links.lww.com/A454.
Reassessment. Between 1999 and 2001, both the Joint Commission and the Veterans Health Administration launched initiatives to make pain the fifth vital sign and to establish patients' rights and standards of care for pain management. They recommend regular assessment of pain at least every four hours in acute care settings, at the same time other vital signs are assessed. In long-term care settings, assessment is likely to occur less frequently—daily, for instance. In people with advanced dementia who also have any known chronic painful condition, pain should be assessed regularly—every four to six hours at a minimum—using the PAINAD scale. When acute pain is present, pain may subside and the PAINAD scale might be administered daily or less often. For chronic pain, the use of the PAINAD scale would continue indefinitely.
CHALLENGES OF USING THE PAINAD
The PAINAD scale was developed using a sample of 19 white, male veterans with dementia, as well as a retrospective chart review of 25 others.1 That was a small sample, and there may be differences in pain expression between women and men with severe dementia, or among men with dementia who aren't veterans. When working with people with advanced dementia, nurses should remember that it's impossible to determine whether a person is in pain through behavior alone.9 Thus, the pain indicators in the PAINAD scale (or any other behavioral pain measure) should not be considered definitive. Rather, such a scale should be used within a broader, more comprehensive pain-assessment protocol. This would include trying to obtain the patient's report of pain, investigating possible causes of pain (such as injury or illness), getting information from surrogates, and possibly starting an analgesic trial.4 It's also important for nurses to talk with family members to ascertain behaviors, or changes in behaviors, that indicated pain when the patient was younger or more cognitively intact.
In addition, no specific instructions are given for how long, how often, or under what circumstances a patient should be observed in the clinical setting before the PAINAD scale is used. Pain is not a constant phenomenon; it can vary throughout the day and according to activity,7 which is why ongoing assessment is necessary. For clinical purposes, it's important to use this scale at different times of day and during different activities, including care provision. The PAINAD scale can be incorporated into routine vital sign assessment, morning or evening care, or the activity of transferring out of bed.
Translations. The PAINAD scale has been translated into Dutch, Italian, and German.10–12
COMMUNICATING THE RESULTS
It's important that everyone involved in a patient's care be told what her or his specific pain behaviors are; this will enable all caregivers to monitor and modify their approaches in order to minimize pain.7 Caregivers should be instructed to monitor for behaviors that might indicate pain and report them to the nursing staff when they occur; the administration of the PAINAD scale by family caregivers has not been tested. It's also important that family members be told about results of pain assessments; they may have fears about the use of opioids in treating pain. When they're involved at every step of the way in assessing and treating pain, they will be prepared if opioids become necessary.8 Also, if an older adult with severe dementia requires admission to an acute care facility, it's important that the hospital's nurse or physician be told what the pain treatment plan has been. Ongoing analgesic regimens, especially medications, should not be stopped in the hospital unless absolutely necessary.
Mr. Chasen, continued. Over a period of several weeks, the nurses loosely followed the World Health Organization's three-step analgesic ladder for the treatment of cancer pain—nonopioids as the first step, followed by mild opioids and then stronger opioids. Once Mr. Chasen was receiving 15 mg of long-acting morphine twice daily, he began to wheel himself around the nursing home again. His aggressive behaviors stopped, and his hands and arms relaxed. He was assessed with the PAINAD scale once a day, and his caregivers learned to monitor his behaviors in relation to the time since his previous cortisone injection. They moved his legs more slowly and with greater gentleness when providing care. If he resisted and pushed the caregivers away, they stopped what they were doing and allowed him to remain in bed. There was a standing order for extra analgesia at such times, after which they would approach him again.
What evidence shows that the PAINAD scale identifies patients in pain? There are several published tools for assessing pain in people with dementia. The PAINAD scale is one of the most appropriate for use in people with advanced dementia because the behavioral indicators reflect those seen in this population. According to the original study on the PAINAD scale, it was moderately reliable and valid for measuring behaviors related to pain in the people studied (in that case, elderly, white, male veterans with advanced dementia).1
- Reliability. The PAINAD scale has moderate internal consistency (Cronbach's α coefficients ranging from 0.30 to 0.83).1 This indicates that the five behaviors assessed are moderately associated with one another when the instrument is used in people with advanced dementia. With an objective measure of pain, interrater reliability (the extent to which two or more raters agree when using the tool) is very important. Interrater reliability for the PAINAD scale was assessed during different activities (pleasant versus unpleasant ones), and reliability coefficients were moderately high during pleasant (r = 0.93 to 0.97) and unpleasant (r = 0.82 to 0.90) activities.
- Validity. Establishing the validity of an observational tool for pain, such as the PAINAD scale, is difficult because people with dementia can neither verify what their behaviors mean nor respond to other tools for concurrent validity (other instruments measuring pain) and divergent validity (other instruments measuring similar, yet different conditions such as depression). The PAINAD scale, like most observational tools used in this population, was by necessity developed by a panel of expert clinicians and researchers without direct input from people with dementia. Without that input, the confidence that can be placed in the PAINAD scale is tempered. Nevertheless, some validity testing of the PAINAD scale has been reported. Warden and colleagues compared it with the DS-DAT and visual analogue scales of pain intensity and reported that the PAINAD scale had moderate to high concurrent validity, depending on whether the patient was at rest or involved in pleasant or unpleasant activities (ranging from r = 0.76 to r = 0.95).1 Some validity testing of the PAINAD scale suggests that the breathing item varies from the other items in the tool. Warden and colleagues measured the construct validity of the PAINAD scale using factor analyses (combining data from two different studies), and 50% of the variance was explained by one factor.1 This factor captured only four of the five behaviors assessed; breathing represented a separate factor that explained an additional 20% of the variance. This reflects moderate validity of the tool but raises questions about the extent to which breathing is internally consistent with the other behaviors assessed.
- ○ Specificity and sensitivity. Sensitivity, the test's ability to identify individuals with pain, has not been reported. Nor has specificity, the ability to exclude those who do not have pain.
Is the tool useful in older adults who have mild dementia? The PAINAD scale has not been evaluated for use in people with mild or moderate dementia. Some of the PAINAD scale behaviors, such as breathing, may be less indicative of pain in cognitively intact older adults. The patient's report of pain, combined with other instruments that provide more detailed assessments of changes in usual activities and behaviors, may be more applicable for people with mild dementia.
Why Assess for Pain in Patients with Advanced Dementia?
There is growing recognition of the problem of pain in older adults, the effects of pain on everyday function and quality of life, and the difficulties of assessing and managing pain in patients with dementia. Indeed, among older adults with dementia who are in long-term care, the prevalence of pain or potentially painful conditions is high, with estimates ranging from 43% to 71%.2 Yet pain is underdiagnosed and undertreated in this population.3
Older adults with advanced dementia cannot report pain because of cognitive and verbal deficits (losses of memory and judgment, confusion, and attention and language deficits). Instead, such patients may express pain or discomfort through a number of behaviors, including restless physical movements and various distressed vocalizations such as moaning and yelling. Furthermore, pain can be exacerbated by the movement that occurs with activities of daily living, such as bathing, dressing, and transferring. During such activities, pain may be exhibited by other behaviors, such as resisting care, clenching fists, grabbing the caregiver, guarding, and becoming rigid. In addition to causing needless suffering, unrelieved pain in people with dementia can have serious consequences, including declines in physical function, diminished appetite, irritability, reduced participation in social activities, and depression.2 (To see a discussion of the need for ongoing assessment of pain in older adults, go to http://links.lww.com/A254.
- Some “nonverbal” people with dementia can indicate with head nodding or vocalization (“uh-huh”) whether they have pain; these patients can be assessed with the Pain Assessment in Advanced Dementia scale.
- Knowing the person's usual functional status and patterns of behavior and activity is essential for identifying deviations that might indicate a new problem with pain.
- Pain is often exacerbated by the touching and moving associated with providing care.
- Pain assessment should include the patient's own report (when possible), as well as observation, and should be incorporated into regular, routine assessment. Gathering ongoing data about the behaviors that individual patients display when they experience pain will increase providers' confidence in conclusions about pain assessment and should improve pain treatment.
Go to http://links.lww.com/A251 to see how nurses assess older adults for pain. To watch a nurse use the Pain Assessment in Advanced Dementia scale, go to http://links.lww.com/A253. Then watch the health care team plan preventive strategies.
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For more information on the Pain Assessment in Advanced Dementia scale and other geriatric assessment tools and best practices, go to www.ConsultGeriRN.org—the clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.
Visit the Hartford Institute site, www.hartfordign.org, and the NICHE site, www.nicheprogram.org, for additional products and resources.
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