ASSIGNMENT: PAIN ASSESSMENT IN ELDERLY PATIENTS WITH DEMENTIA

Assignment: Pain Assessment in Elderly Patients with Dementia

Pain Management Pain Management in Persons Win Persons Withith

Dementia Dementia BY ANN L. HORGAS, RN, PHD, SUSAN M. MCLENNON, MSN, ARNP, AND AMANDA L. FLOETKE, MSN, ARNP

Alzheimer’s Care Quarterly 2003; 4(4):297–311 © 2003 Lippincott Williams & Wilkins, Inc. ACQ

PP hysical pain is a significant problem for many elderly adults. Effective pain management is a complex clinical process that requires thorough assessment, appropriate intervention, and systematic reassessment. Dementia complicates this process because the ability to recall, recognize, and verbally report pain is compromised in persons with dementia. Evidence suggests that persons with dementia are less likely to report and be treated for pain than cognitively intact elders. This article provides an overview of pain, discusses specific issues pertaining to pain

assessment and management in persons with dementia, summarizes barriers to effective pain management, and highlights key methodological issues in research on pain in persons with dementia.

Key words: aging, dementia, pain

Physical pain is a significant problem for many elderly adults. It has been estimated that approximately 50% of community-dwelling elders suffer from pain1,2 and that the incidence of pain is twice as high in people aged 65 and older as in younger adults.3 The prevalence of pain in nursing homes is reported to be as much as 70% to 80%.4,5

The high prevalence of pain is primarily related to the increased rates of chronic health disorders in advanced age, particularly painful musculoskeletal conditions such as arthritis, gout, and peripheral vascular disease.6 In addi- tion, in this age group there is a greater prevalence of acute conditions such as cancer, surgical procedures, cardiovas- cular disease, and other painful medical diseases and syndromes.6–8 Cancer, in particular, is associated with sig- nificant pain for one third of patients with active disease and for two thirds of those with advanced disease.6,9 Assignment: Pain Assessment in Elderly Patients with Dementia

Thus, pain among elderly adults is quite common, and is also often complicated by the concomitant presence of dif- ferent types, multiple locations, and varying causes of pain.

Among persons with dementia, the prevalence of pain is not known. Persons with severe dementia are usually ex- cluded from pain studies.6,10 This is because pain studies typically rely on self-report,and persons with dementia are believed to be unable to reliably describe their pain. Per- sons with dementia have the same types of medical condi- tions as elders without dementia; thus the prevalence of painful conditions should be roughly equivalent in the 2 groups. Evidence suggests, however, that cognitively im- paired elders are less likely to be treated for pain than are cognitively intact elders.. 11 Undoubtedly, the assessment and treatment of pain in elders with dementia is somewhat more complicated than in intact elders. The principles of pain management, however, should apply to elders regard- less of cognitive status. Thus, the purpose of this article is to (1) provide an overview of pain, including the impor- tance of pain management, definitions, types, and corre- lates of pain, and an introduction to pain management; (2) discuss pain in persons with dementia; (3) summarize pain assessment and management strategies for persons with dementia; (4) discuss barriers to effective pain man- agement in this population; and (5) highlight key method- ological issues in conducting research on pain in persons with dementia.

A PRIMER ON PAIN IN ELDERLY ADULTS

Importance of effective pain management

There are several key reasons why knowledge about pain in elderly adults is so important. First, pain has major im- plications for elders’ health, functioning, and quality of life.12 For instance, pain is associated with depression, withdrawal, sleep disturbances, impaired mobility, de- creased activity engagement, and increased health care use.1,13 Other geriatric conditions that can be worsened by pain include falls, deconditioning, malnutrition, gait dis- turbances, and delayed rehabilitation.1,14 Thus, chronic pain has deleterious effects on the physical, functional, and mental health of elderly adults. Assignment: Pain Assessment in Elderly Patients with Dementia.

Second, the promotion of comfort and relief of pain is fundamental to health care. Given that the prevalence of pain in older adults is substantially higher than among younger adults, the role of health care providers in managing pain is increasingly important in the elderly population. Interdisciplinary teams, consisting of nurses, physicians, psychologists, occupational and physical therapists, phar- macists, and others, must work together in diverse health care environments to manage pain. In addition, patients and families must be taught about pain and how to manage it at home using both pharmacological and nonpharmaco- logical treatments. As such, all health care providers must be knowledgeable about pain management among elderly adults in general, and about managing pain in elders with dementia in particular.

Third, the Joint Commission on Accreditation of Health- care Organizations (JCAHO) now officially recognizes pain as a major health problem and that all patients have the right to appropriate assessment and management of pain.15 These requirements, implemented in 2001, con- sider pain the “fifth vital sign” and require systematic and regular assessment of pain in all hospitalized patients. Health care providers must now be compliant with regula- tory guidelines about pain management. It is important to note that these regulations address only hospitalized per- sons and do not pertain to persons residing in the com- munity, living in long-term care settings,or being treated in outpatient clinics. Nonetheless, the JCAHO standards high- light the fact that pain management is important for all patients, including those with dementia.

Definitions of pain

Pain is a multidimensional, subjective experience with sen- sory, cognitive, and emotional dimensions.16,17 For clinical practice, Margo McCaffery’s definition of pain is among the most relevant. She states,“Pain is whatever the experi- encing person says it is, existing whenever he says it does.”18,19 (p17) Both of these definitions highlight the fact that pain is highly subjective and that patients’ self-report and description of pain are very important to understand- ing the pain experience.Assignment: Pain Assessment in Elderly Patients with Dementia. These definitions are problem- atic, however, for working with persons with Alzheimer’s disease or other dementias because pain is defined solely on the basis of self-report. Dementia is characterized by memory loss, loss of judgment, language deficits, confu- sion, withdrawal, and, in the later stages, the inability to communicate. As such, the ability to recall and/or verbally self-report pain is often reduced in elders with dementia. Does this mean that we simply cannot evaluate pain in per- sons with dementia, or that we can assume that if they cannot say it that they don’t have it? This would be a very unfortunate interpretation since persons with dementia experience many of the same painful conditions as elders without dementia. Instead, we are challenged, as practi- tioners and researchers, to broaden our definitions of pain and to expand our skills in evaluating pain in persons with dementia.

Types of pain – Assignment: Pain Assessment in Elderly Patients with Dementia

There are several different types and classifications of pain. The most basic distinction is whether the pain is acute or chronic. Acute pain results from an injury, surgery, or disease-related tissue damage.20 It is usually associated with autonomic activity, such as tachycardia and diaphore- sis. Acute pain is usually relatively brief and subsides with healing. In contrast,chronic pain endures past the normal duration of tissue damage (usually more than 3–6 months) and autonomic activity is usually absent.20 Chronic pain can lead to functional loss, reduced quality of life, and mood and behavior changes, especially when it is not ade- quately treated.

Pain is further classified as either nociceptive or neuro- pathic, depending on the cause of the pain. Nociceptive pain results from disease processes (eg, osteoarthritis), soft-tissue injuries (eg, falls), and medical treatment (eg, surgery,venipuncture, and other procedures) and is associ- ated with stimulation of specific peripheral or visceral receptors. Nociceptive pain is usually localized and responsive to treatment. Neuropathic pain is caused by pathology in the peripheral or central nervous system. This type of pain is often associated with diabetic neu- ropathies, phantom-limb pain, postherpetic and trigeminal neuralgias, and cerebrovascular accidents. Neuropathic pain is more diffuse and less responsive to analgesics. It is important to note, however, that these pain types often overlap, and are not always clearly differentiated.

Pain management in elderly adults

Pain management is a complex clinical process. It requires thorough assessment of pain, appropriate intervention, and systematic reassessment. Several excellent pain man- agement protocols have been developed for use with eld- erly adults. For instance, the American Geriatrics Society has published clinical practice guidelines for managing chronic pain in older adults.17 These guidelines provide comprehensive information that is specific to the needs of geriatric patients. In addition, the American Pain Society has published guidelines for the management of pain in os- teoarthritis, rheumatoid arthritis, and juvenile chronic arthritis.21 These guidelines are disease-specific, rather

than age group specific, but provide comprehensive infor- mation for managing these chronic pain conditions. The Agency for Health Care Policy and Research has also de- veloped clinical guidelines for the management of acute pain, but this protocol is less specific to older adults.22

More recently, Weiner and Hanlon have published an excellent overview for managing pain in nursing home res- idents, many of whom have cognitive losses.23

PAIN IN PERSONS WITH DEMENTIA

Despite the proliferation of pain studies over the past decade or so, the relationship between dementia and the neurophysiology of pain has not been extensively exam- ined. Dementia is associated with central nervous system changes such as the destruction of cortical neuronal cells and depletion of cortical chemical neurotransmitters. No- ciceptor response and transmission of pain sensation, however, are not thought to be affected by these physio- logical changes.24 In particular, the somatosensory cortex, crucial to the central modulation of pain, is largely unaf- fected by dementia. The results of experimental pain stud- ies indicate that pain thresholds (eg, the minimum level at which a painful stimulus is recognized as pain) did not differ between cognitively impaired and intact elders. Assignment: Pain Assessment in Elderly Patients with Dementia. 25,26

Pain tolerance (eg, the maximum level at which a pain stimulus is voluntarily tolerated), however, was signifi- cantly increased in persons with mild dementia com- pared to elders without dementia.26,27 Thus, the sensory/ discriminative dimensions of pain appear to be largely pre- served in persons with dementia (as indicated by pain threshold) but the motivational-affective and cognitive- evaluative pain systems (as indicated by pain tolerance) are affected.27–39 As such, the empirical evidence indicates that cognitively impaired elders are not less sensitive to pain, but that they may fail to interpret the sensations as painful.

Despite these findings, evidence suggests that cognitively impaired older adults underreport pain relative to nonimpaired elders. Parmelee and colleagues found an in- verse relationship between cognitive impairment and self- reported pain intensity in a study of 758 institutionalized elders; that is, cognitively impaired residents reported lower pain intensity than did intact residents.31 Cohen- Mansfield and Marx found a similar relationship in a sam- ple of 408 nursing home residents.32 In a representative sample of 516 Berlin elders that included both institution- alized and community-dwelling adults, Horgas and col- leagues reported that the prevalence of self-reported pain declined significantly as the severity of diagnosed dementia increased.33 Werner and colleagues reported that adult day care participants without cognitive deficits had higher prevalence rates of self-reported pain than those with mild to moderate impairment (48%–71% vs 30%–57%).5 Thus, there is some evidence that cognitive impairment inhibits elders’ability or inclination to verbally report pain. This may be due, in large part, to the over- reliance on self-report methods of measuring pain. In the following sections, strategies for assessing and treating pain in persons with dementia will be discussed. Assignment: Pain Assessment in Elderly Patients with Dementia.

Effective management of pain among elderly adults relies on adequate pain assessment. Within a caregiving context, pain assessment depends on communication between the care recipients (eg, patients and nursing home residents) and health care providers. It is also important to gain in- formation from family members about the patient’s pain, especially in the case of cognitively impaired elders. Ideally, pain assessment attends to both verbal, self-reports of pain and nonverbal behaviors that are indicators of pain. In addition, pain assessment should be comprehen- sive and should consider the presence, location(s), dura- tion, intensity, and emotional aspects of pain, as well as aggravating and alleviating factors. Assignment: Pain Assessment in Elderly Patients with Dementia. The impact of pain on functional ability, mood, sleep, activity level, and social re- lationships should also be assessed. There are several widely used tools that are available to comprehensively as- sess pain, such as the Brief Pain Inventory or the McGill Pain Questionnaire.34,35 These measures are ideal, but may be too complex for use in persons with dementia. In these individuals, clinicians need to gain concise information about the presence and intensity of pain, at a minimum, to guide the pain treatment process. Thus, the following sec- tions focus specifically on self-reported pain intensity and observed pain behaviors.

Self-reported pain

There is no objective biological marker or laboratory test for the presence of pain. Thus, the most accurate and reli- able measure of pain is the patient’s self-report. This is also consistent with the definition provided earlier in this manuscript—that pain is defined as “whatever the experiencing person says it is,existing whenever he (or she) says it does.”19 (p17)

The first principle of pain assessment is to ask about the presence of pain on regular and frequent intervals. It is important to allow the patient sufficient time to consider the question and to formulate an answer. This is especially important when working with cognitively impaired eld- ers. Evidence suggests that even patients with mild to moderate cognitive impairment can report their pain when asked simple questions and given sufficient time to respond.14 It is also important to explore different words that the patient may use synonymously with pain, such as discomfort or aching.

The intensity of pain can be measured in many ways. Some commonly used tools include the visual analog scale (VAS), the verbal descriptor scale, and the faces scale.1 VAS is widely used, especially in hospital settings. Patients are asked to rate the intensity of their pain on a 0 to 10 scale. The VAS requires the ability to discriminate subtle differ- ences in pain intensity and may be difficult for some elders to complete. A tool that has been specifically recom- mended for use with elderly adults is the verbal descriptor scale.1,36 This tool measures pain intensity by asking par- ticipants to select a word that best describes their present pain (eg, no pain to worst pain imaginable). Assignment: Pain Assessment in Elderly Patients with Dementia. This measure has been found to be a reliable and valid measure of pain intensity, and is reported to be the easiest to complete and the most preferred by older adults.1,36 In addition, there are several scales that use pictures of faces to represent pain intensity. This type of measure is often recommended for use with cognitively impaired elders. The Faces Pain Scale was developed to assess pain intensity in children, and consists of 7 cartoon facial depictions ranging from the least pain to the most pain possible.37 It is considered more appropriate for use with elderly adults than other facial depiction scales because the cartoon faces are not age-, gender-, or race-specific.38 Other authors, however, have indicated that persons with mild to moderate de- mentia have limited understanding of this measure.

Observed pain indicators – Assignment: Pain Assessment in Elderly Patients with Dementia

The assessment of pain behaviors is often necessary in persons with dementia, due to their inability to verbally communicate their pain. Observed pain behaviors include facial grimacing and structured assessments of physical movements (eg, rubbing, bracing, guarding).40,41 These measurement strategies have not been widely tested in eld- erly adults, although some studies are under way to inves- tigate their use in cognitively impaired elders. Recently, Feldt documented the pain behaviors of facial grimacing, rubbing, vocalizations, sighing, complaining, screaming, and body rigidity in cognitively impaired elders after hip fracture surgery.42 Using observational measures of pain, Raway found few significant differences between cognitively impaired and cognitively intact elders in observed pain behaviors (eg, bracing, guarding, rubbing) or facial ex- pressions (eg, grimacing).43 This study, however, focused on acute, postoperative hip surgery pain in hospitalized elders and was limited by a small sample size. In a similar study, Feldt examined nonverbal pain indicators in 88 pa- tients with hip fractures and found that cognitively im- paired elders exhibited significantly more nonverbal pain indicators than those who were cognitively intact.42 Fur- ther, Hadjistavropoulos and colleagues examined pain be- haviors and facial expressions in postsurgical patients in a rehabilitation hospital.44 These authors found that only facial movements were sensitive to cognitive status effects; impaired patients demonstrated more facial expressions of pain than did non-impaired patients. Thus, while cognitive impairment may limit the verbal expression of pain, there is some evidence to suggest that nonverbal pain behaviors remain at least partially intact. It has been suggested that as the dementia progresses, untreated pain is a contribut- ing factor in agitated and disruptive behavior.

Several measures have been developed specifically to as- sess pain in persons with dementia. For instance, Parke published a method of rating pain by using changes in fa- cial expressions, body movements, and activity patterns.47

This measure, however, was not validated. Hurley and col- leagues developed the Discomfort Scale-DAT to assess dis- comfort in persons with advanced Alzheimer’s disease.48

They identified 9 reliable indicators of discomfort associ- ated with fever: noisy breathing, absence of a look of con- tentment, looking sad, looking frightened, frowning, absence of a relaxed body posture, looking tense, and fidg- eting. This measure, however, is aimed at assessing dis- comfort, defined as a negative and/or emotional state subject to variation in magnitude in response to environ- mental conditions, which has been shown to be empiri- cally distinct from pain.49 This measure,however,has been reported to require significant training and to be too com- plex for routine nursing care. Assignment: Pain Assessment in Elderly Patients with Dementia. 50 Feldt and colleagues de- veloped the Checklist for Nonverbal Pain Behaviors to assess the presence of 6 pain behaviors during rest and movement.6 This tool is based,however,on naturalistic ob- servations. Thus, if the person with dementia is observed sitting quietly, the pain that may be present during move- ment, such as getting in and out of bed, may be missed. More recently, Snow and colleagues developed the NOP- PAIN scale for assessing pain in noncommunicative nurs- ing home residents.51 The NOPPAIN is used by certified nursing assistants to rate the presence and intensity of pain among residents following usual care activities. The results of preliminary studies testing the NOPPAIN indicate that it has high reliability and validity and is sensitive to treatment effects. Thus, this measure shows promise for advancing the research in this area and for enhancing clin- ical practice.

These studies all highlight the importance of using ob- servational measures to assess pain in cognitively im- paired elders.10,52,53 They also highlight some of the difficulties of measuring pain in this population. Nonethe- less, more research in this area is needed, and some work is currently in progress by the present authors and other research teams. It is expected that this work will help to refine and advance the measurement of pain in persons with dementia.

Timing of pain assessments

More recent evidence suggests that the timing of pain as- sessments may be an important variable in minimizing cog- nitive status effects on self-reported pain. Most studies documenting the inverse relationship of cognitive status and self-reported pain prevalence have relied largely on as- sessments of current pain. While not explicitly stated, it is likely that these assessments were conducted while par- ticipants were in a resting or static position. Recent evi- dence, however, suggests that simple movements (like transferring in and out of bed or changing position) may exacerbate pain and lead to more accurate reports of pain prevalence.42,54 Elders with dementia may forget their pain until movement reminds them of it. Assignment: Pain Assessment in Elderly Patients with Dementia. This raises the interesting possibility that self-reports of pain may be en- hanced, and cognitive status differences minimized, when assessment is immediate rather than retrospective and conducted at rest and after movement. Thus, there is some support for the use of observational methods of assessing pain in elderly adults, particularly in persons with demen- tia. Ideally, a comprehensive pain assessment approach should be undertaken that includes assessment of self- report and observational methods.

Managing pain in older adults can be a challenging process. Pain treatment approaches that use a multidimensional ap- proach and that are individualized to the patient, however, are often effective.55 The main goal of pain management in older adults is to maximize function and quality of life.56

Thus, a combination of pharmacological and non-pharma- cological strategies should be used to relieve pain.

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Pharmacological pain treatment

Pain treatment with medications is a complex decision- making process based on multiple considerations. Ideally, it is a mutual process between health care provider, the patient, and significant others. It includes a careful discus- sion of risks versus benefits and the establishment of clear goals of therapy. Often it is a process of trial and error that aims to balance medication effectiveness with manage- ment of side effects. Other considerations included in the process are frequency of use, type of pain, duration of treatment, and cost.

The World Health Organization provides an analgesic ladder that has been successfully used as a guide for treat- ing cancer pain.57 Choices are made from 3 drug cate- gories based on pain severity: the non-opioids,opioids,and adjuvant agents. Combinations of drugs are used because 2 or more drugs can treat different underlying pain mech- anisms, different types of pain, and allow for smaller doses of each analgesic to be used, thus minimizing side effects. Adjuvant drugs have primary purposes other than pain re- lief, but can be used for their analgesic effects in certain painful conditions.17 Assignment: Pain Assessment in Elderly Patients with Dementia

Age-related physiologic changes

Specific age-related changes influence the pharmacody- namics (the pharmacological effect of the drug on the body) and pharmocokinetics (the concentration of active drug in the body) of medications. Some changes with ad- vanced age include diminished absorption due to in- creased gastric pH and decreased intestinal blood flow. Drug distribution is affected by less lean body mass, in- creased body fat and decreased body water content, in- creased plasma protein, and changes in nutritional state. Drug metabolism is affected by decreased hepatic func- tion. Drug excretion and elimination is reduced by 10% per each decade after age 40 because of declines in renal function.58

Special considerations for administering analgesics

Older adults are at higher risk for side effects with drug therapy due to age-related decline in drug metabolism and elimination. Recommendations for beginning medication treatment include starting at low doses and gradually titrat- ing upward while monitoring and managing side effects. The adage “start low and go slow” is often used. Titrate doses upward to achieve desired effect using short-acting medications first, and consider using longer duration med- ications for long-lasting pain. Choose a drug with a short half-life and the fewest side effects if possible.58

Multiple drug routes are available for administration of pain medications. Often the first choice is the oral route because it is the least invasive and very effective. The onset of action is within 30 minutes to 2 hours. For more immediate pain relief, intravenous administration is recom- mended. In general, intramuscular injections should be avoided in the elderly because of tissue injury and because they are pain producing. Topical and rectal routes may also be used in pain medication administration. Whenever possible, adopting a preventive approach to pain manage- ment is recommended. By treating pain before it occurs, less medication is required than to relieve it.59 Around the clock dosing, dosing prior to a painful treatment or event, and giving the next dose before the previous dose wears off are examples of pain prevention.

Types of analgesic medications

Medications that are commonly used to treat pain in eld- erly adults are summarized in Table 1. This table also in- cludes recommended dosages and special considerations. Specific information about these types of medications is discussed below.

Non-opioid medications – Assignment: Pain Assessment in Elderly Patients with Dementia

Non-opioids are often the first line in pharmacological pain treatment. This group includes acetaminophen, non- steroidal anti-inflammatories (NSAIDs), cyclooxygenase-2 (COX-2) inhibitors, and tramadol. They are generally used for a wide variety of painful conditions, both acute and chronic,of mild to moderate severity. Acetaminophen (eg, Tylenol) is considered the drug of choice for relief of mus- culoskeletal pain because it has few side effects and is probably the safest non-opioid for most people.17 How- ever, it should be used with caution in people with under- lying hepatic or renal disease. The NSAIDs (eg, ibuprofen and naproxen sodium) are also effective for mild to mod- erate pain. NSAIDs or acetaminophen are often used in combination with opioids for moderate to severe pain.

The most common side effect of the NSAIDs is gastric damage that occurs locally as a gastric irritant and system- ically through inhibition of prostaglandin synthesis, resulting in increased gastrointestinal tract susceptibility to injury. The elderly are more likely to develop ulcer disease and have a greater incidence of death from the gastrointestinal effects of NSAIDs. Renal insufficiency is more likely to occur in the elderly with NSAID use. Other side effects include increased bleeding time, central nerv- ous system effects, hepatic disease, and worsening asthma. When NSAIDs are used as single doses, in low doses, and for short periods of time, side effects are usually less common than with long-term use. Coadministration of misoprostol (Cytotec) has been shown to reduce the gas- trointestinal complications associated with NSAID use.62 Assignment: Pain Assessment in Elderly Patients with Dementia

The COX-2 inhibitors, celexicob and rofexicob, are as ef- fective as NSAIDs for pain relief, are indicated for mild to moderate pain, are associated with a lower risk of gastroin- testinal bleeding,but have a similar risk for other side effects. Celexicob should not be used with sulfa sensitivities.

Tramadol (Ultram) has characteristics of both non- opioids and opioids in analgesic properties. It is effective for moderate to severe pain and its mechanism of action is not completely understood. Nausea and vomiting are com- mon side effects associated with the use of tramadol,along with dizziness, sedation, restlessness, diarrhea or constipa- tion, dyspepsia, weakness, diaphoresis, seizures, and respi- ratory depression.60 It should not be used in people with a history of codeine allergy and should be used cautiously in hepatic or renal impairment. Assignment: Pain Assessment in Elderly Patients with Dementia

Opioid medications

Opioid drugs (eg, codeine and morphine) are effective at treating moderate to severe pain from multiple causes. They are effective in the elderly although many older adults and health care providers are reluctant to use them because of fears of overdose, side effects, and intolerance. Potential side effects include nausea, constipation, drowsi- ness, cognitive effects, and respiratory depression. The Agency for Health Care Policy and Research (now known as AHRQ) recommends achieving safe administration of opioids to the elderly by reducing the dose to 25% to 50% of the adult dose.63 Tolerance to the side effects develops with use over time; therefore coadministration of stool softeners for relief of constipation is recommended. Assignment: Pain Assessment in Elderly Patients with Dementia

Adjuvant drugs, or other non-opioid drugs administered in conjunction with other analgesics, are often adminis- tered with non-opioids and opioids to achieve optimal pain control through additive analgesic effects or to en- hance response to analgesics. Tricyclic antidepressants (eg, nortriptyline) are used for neuropathic pain. Antide- pressants are often used in addition to analgesics to treat underlying depression and anxiety associated with chronic pain. Anticonvulsants (eg, carbamazepine) are often used for trigeminal neuralgia. Local anesthetics such as lidocaine, as a patch, gel, or cream, can be used as an ad- ditional treatment for the pain of postherpetic neuralgia.

Drugs to avoid in elders

Medications to avoid in the elderly include meperidine (Demerol), propoxyphene (Darvon or Darvocet), and pen- tazocine (Talwin) because of the risk of delirium, seizures, and renal impairment.64 Additionally, sedatives, antihista- mines, and antiemetics should be avoided or used with caution because of long duration of action, risk of falls, an- ticholinergic effects, and sedating effects.61

Nonpharmacological pain treatment – Assignment: Pain Assessment in Elderly Patients with Dementia

Whenever possible, pain should be treated with a combi- nation of drug and nondrug therapies.56 A combination approach may help to provide more effective pain man- agement with less potential for negative side-effects due to medications.65 In addition, the use of nondrug approaches can often be taught to patients, families, and caregivers.

Nonpharmacological pain treatment strategies generally fall into 2 categories: physical pain relief approaches and cognitive-behavioral approaches.56 Physical strategies are interventions such as repositioning to promote comfort and prevent skin breakdown,66 transcutaneous electrical nerve stimulation, use of heat and cold, massage, and mild exercise. Cognitive-behavioral interventions change the person’s perception of the pain and improve coping strate- gies.66 These include strategies such as relaxation, distrac- tion, guided imagery, hypnosis, and biofeedback.

Older adults are generally responsive to the use of non- drug methods of treating pain.53,67 In fact, one study showed that 96% of older adults reported using at least 1 complementary/alternative therapy modality, and that prayer was the most commonly reported coping strategy.68

It is important to recognize, however, that individuals differ in their preferences for and ability to use non-pharmaco- logical interventions to manage pain. Spiritual and/or reli- gious coping strategies, for instance, must be consistent with individual values and beliefs. Other strategies, such as imagery or relaxation techniques, may not be feasible for cognitively impaired elders. Thus, it is important for health care providers to consider a broad array of non-pharmaco- logical pain management strategies, and to tailor the selec- tions to the individual. It is also important to gain individual and family input about the use of home and folk remedies, and to support their use as appropriate.

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Special considerations in treating pain in persons with dementia

Evidence suggests that even when pain is recognized in those with dementia, it is often significantly undertreated. Several studies have documented that diminished cogni- tive function is significantly associated with less pharma- cological pain treatment. For instance, Horgas and Tsai investigated pain treatment in a sample of 339 nursing home residents.11 They reported that cognitively impaired residents were prescribed and administered significantly less analgesic medication, measured in acetaminophen equivalents, than were more intact residents. These differ- ences persisted even after controlling for the presence of painful conditions. In a hospitalized sample, persons with advanced dementia treated for hip fractures received 3 times less opioid analgesic than was given to cognitively intact patients.69 Similarly, others studies have docu- mented that less than one fourth of nursing home resi- dents with dementia who were recognized as having pain were receiving pain treatment.30,70,71

In situations where clinicians suspect that a person with dementia may be experiencing pain, a clinical trial of pain medication, as well as non-pharmacologic strategies, should be implemented. In particular,Weiner and Hanlon have advocated an empirical approach to managing pain in this population.23This involves a thorough investigation of behavior changes in persons with dementia and, once other causes for change have been ruled out, a trial of anal- gesics is initiated. Assignment: Pain Assessment in Elderly Patients with Dementia. Continued symptoms, such as vocaliza- tions or agitation, after administration of pain medication should be considered as evidence that the patient’s symp- toms are due to unrelieved pain and that further treatment should be initiated. Kovach and colleagues developed The Assessment of Discomfort in Dementia (ADD) protocol to assess and treat physical pain and affective discomfort in persons with late-stage dementia.72 The protocol consists of a systematic evaluation of physical causes of discomfort and patient history, followed by a stepwise implementa- tion of non-pharmacological and pharmacological inter- ventions. Use of the protocol has shown a significant increase in regularly prescribed analgesic medications and non-pharmacological treatments, as well as significant de- creases in several behavioral symptoms of pain.

Regardless of the specific approach used, managing pain at the end of life in persons with dementia involves multiple challenges. First, pain must be carefully and sys- tematically assessed. Second, pain should be treated phar- macologically, exercising caution to avoid and/or manage polypharmacy and side effects. Finally, pain management protocols should include appropriate and effective non- pharmacological interventions. This combined approach is discussed more fully by Allen and colleagues (this issue).73 Assignment: Pain Assessment in Elderly Patients with Dementia

Barriers to effective pain treatment

There are a number of factors that can interfere with ef- fective pain management, including both individual and caregiver-based factors. Individual factors that may impair pain assessment include the following:(a) a belief that pain is a normal part of aging, (b) concern of being labeled a hypochondriac or complainer,(c) fear of the meaning of the pain in relation to disease progression or prognosis, (d) fear of analgesics and narcotic addiction, (e) worry about health care costs, and (f) a belief that their pain is not im- portant to health care providers.  17,24 Other factors,such as hearing and speech difficulties, may prevent elderly adults from communicating pain to health care providers.6 As the severity of dementia increases, some of these factors may have less salience as individuals lose their ability to com- prehend and express fears and beliefs. Nonetheless, these factors are important to keep in mind because they may be very salient in the minds of caregivers and family mem- bers. Thus, even in persons with dementia, family mem- bers may resist pain treatment for a variety of reasons.

Pain detection and management are also influenced by provider-based factors. Health care providers have been found to share the mistaken belief that pain is a part of the normal aging process and to avoid using opioids because of fear about potential addiction and adverse side ef- fects.24 Thus, pain assessment and management can be a complicated clinical issue. Health care providers should face the challenge of pain management by first systemati- cally examining their own biases, knowledge, and beliefs about pain, and eliciting and understanding the challenges and beliefs that their patients and patients’ families bring to the situation as well. Assignment: Pain Assessment in Elderly Patients with Dementia

METHODOLOGICAL ISSUES IN PAIN RESEARCH IN PERSONS WITH DEMENTIA

This article describes some of the challenges of pain as- sessment and treatment in persons with dementia. Clearly, the problem of pain among elderly adults is great and prac- titioners are urgently seeking solutions to promote com- fort for their clients. In clinical settings, efforts have been made to create pain checklists and pain management pro- tocols that serve clinical and quality assurance purposes. The need exists, however, for more research on pain in persons with dementia. Despite the enormous progress that has been made in understanding and treating pain in the general population over the past several decades, re- search on pain in elderly adults, and specifically in persons with dementia, is in its relative infancy. Because the corner- stone of effective pain management is pain assessment, the focus must be on developing reliable and valid measures of pain for use in this vulnerable population, and on conduct- ing rigorous investigations. There is some promising work in this area, but more research is, as always, needed.

Measuring pain in persons with dementia relies on be- havioral assessments. In persons who cannot communi- cate their pain verbally, the use of nonverbal means of evaluating the presence and intensity of pain is imperative. Behavioral studies, however, are challenging to conduct,es- pecially in persons with dementia or in long-term care set- tings where many frail and/or elders with dementia reside. Behavioral analysis has a long scientific tradition, and suc- cessful studies have been conducted in elderly popula- tions in a variety of settings.74–76 The extension of this approach to the study of pain in elderly adults has also had some success.41,51,77 Thus, there is a strong foundation upon which scientists and practitioners can build. Assignment: Pain Assessment in Elderly Patients with Dementia.

Research on pain in persons with dementia must be concerned with several methodological issues. These include the treatment implementation and the assessment of treatment effects, validity issues, clinical significance, and translational research. Each of these issues will be ad- dressed in the following sections.

The first important methodological issue is the assess- ment of treatment effects. The goal of pain management is to reduce or alleviate pain. Thus, a critical step in evaluat- ing the pain management process is to ensure the treat- ment implementation.78 This must be followed by systematic evaluation of the treatment outcome. In order to reliably measure treatment effectiveness in persons with dementia, psychometrically sound measures of be- havioral indicators of pain must be available. The validity of pain behavior measures is difficult to establish, however, since pain is a subjective experience. Given that self-re- port is considered the gold standard of pain assessment, behavioral measures must be validated with self-report measures. In persons with dementia, the ability to reliably self-report is often limited. Researchers should consider looking at other pain models, including postsurgical acute pain, to validate their behavioral measures of pain. This might provide a somewhat more standardized “pain induc- tion” that is likely to result in measurable pain behaviors. Assignment: Pain Assessment in Elderly Patients with Dementia. The reliability of behavioral measures must also be addressed. Interrater reliability is critical so that raters are able to identify the same pain behaviors with a high level of agreement. As such, behavioral measures of pain must be clearly defined and easy to use. They must also be sen- sitive enough to detect subtle behavioral change reflective of a change in pain status. In addition, they should be mul- tidimensional enough to assess other aspects of pain, such as functioning and depression. Ideally, a specific pain be- havior measure used to assess proximal treatment effects (eg, reduction in pain intensity 1 hour after administering analgesics) should be embedded in a broader, multidimen- sional pain assessment protocol that measures more distal outcomes, such as an increase in activities or reduction in depression.

A second major methodological issue that must be ad- dressed in the study of pain in persons with dementia is the balance between internal and external validity (see ar- ticle by Zarit and colleagues,previous issue, for further dis- cussion).79 To date, much of the work on pain has relied on experimental designs in laboratory settings. Very few of these studies have included elderly participants, and even fewer have included cognitively impaired elders. In fact, the presence of dementia is often considered an exclusion criterion for participation in research. Laboratory studies use experimental designs and usually induce pain via a standardized procedure (eg, ischemic pain, cold pressor test). Laboratory-based pain differs, however, from clinical pain in a number of dimensions, including attributions about the cause of pain, the duration of the pain stimulus, and the controllability of the pain. This is especially true in the case of chronic pain, a type of pain that is persistent and often less easily relieved. Thus, the standardization of laboratory studies of pain increases the extent to which one can identify and measure painful stimuli,but limits the extent to which the study results may generalize to under- standing the condition of chronic pain that is so common among elderly adults.

On the other hand, most studies that have focused specifically on pain in elderly adults have been conducted in clinical settings. Studies have been carried out in nursing homes, outpatient clinics, and hospitals. As such, the research settings are more ecologically valid and represent the real world of pain in elderly adults. Some of these stud- ies have used the presence of dementia as an exclusion criterion for study participation; others have focused exclusively on persons with dementia. The inclusion of elders with dementia in study samples increases the extent to which the study findings can be generalized to this im- paired population. The cost, however, may be measured in terms of lowered internal validity. That is, the extent to which behaviors may be directly attributed to pain is lower in elders with dementia who exhibit a variety of be- havioral symptoms. Some clinically based studies have ex- amined pain using a 2-group design. Assignment: Pain Assessment in Elderly Patients with Dementia. That is, pain behaviors are compared in a group of cognitively intact elders relative to a group of cognitively impaired elders. This is a common research design that is relatively feasible to conduct. It is limited,however,by the lack of random as- signment to the “treatment”(eg,dementia) versus “control” (eg, intact) groups. Thus,differences that emerge between the groups, if any, may reflect the fact that elders with de- mentia and elders without dementia are different at the outset in some fundamental ways. To be fair, there are few alternatives to this design because researchers cannot ma- nipulate cognitive status. Nonetheless, investigators in this area should be aware of this threat to internal validity and might consider the use of alternative research designs, such as within-subject designs, to avoid the randomization issue. This alternative approach might also yield important new information about the variability of pain reports. The balance between internal and external validity is always delicate in research designs,but even more so when study- ing pain in persons with dementia.

A third methodological issue that must be considered in research on pain in persons with dementia is that of clini- cal significance. That is,does the pain treatment result in a meaningful difference to the client? This is a difficult ques- tion to answer with regard to the assessment of pain,but is particularly difficult in persons with dementia. People with dementia, as discussed previously, lack the cognitive and verbal abilities required to convey that a particular treatment resulted in a meaningful difference to them. And since pain is, by definition, a subjective experience, 2 individuals with the same tissue damage or injury may ex- perience the resulting pain in completely different ways. Assignment: Pain Assessment in Elderly Patients with Dementia. Therefore it is difficult to set a standard acceptable level of pain from which to base judgments on whether or not a particular treatment reduced pain effectively for all peo- ple. In order to establish clinical significance, one may ar- gue that the only meaningful result to the individual would be eliminating the pain. However, the elimination of pain may not be realistic or possible for all individuals, espe- cially those with chronic musculoskeletal conditions.

Currently there is no clear-cut method for establishing the clinical significance of a particular treatment for pain reduction. Czaja and Schulz provide a comprehensive dis- cussion on several ways to measure the clinical signifi- cance of interventions.80 They recommend that achieving clinically significant outcomes should be just as important as achieving statistical significance. It is imperative that clinical research interventions be practical to the popula-tion for which they are targeted. In order to evaluate the effectiveness of interventions in people with dementia, a control group without dementia is often studied as well. One recent approach, as described by Czaja and Schulz, that may be an option for determining the clinical signifi- cance of interventions for people with dementia is the use of equivalence testing. Assignment: Pain Assessment in Elderly Patients with Dementia. 80 This would consist of developing norms for pain reduction in a nonpatient sample consist- ing of older adults with similar characteristics as those of the patients. Typically, cognitively intact older adults are used as norms for older adults with dementia. These norms would then be applied to the patient sample with dementia to determine if the intervention reduced pain in a clinically significant manner.

However, since clinical significance is a measure of how important the intervention is to the individual, it may not be appropriate to base clinical significance of pain treat- ments on group norms. Alternatively, researchers should consider using different research methodologies to evalu- ate treatment effectiveness for specific individuals. For instance, single-subject design methodology allows re- searchers to collect multiple points of data over time, reverse treatment effects, and evaluate whether or not the intervention caused change in a subject’s clinical picture. In this instance, the clinical change would represent re- duction in pain as evidenced by behavioral indicators. This may be a more efficient and appropriate way to eval- uate the clinical significance of a pain intervention be- cause it allows the assessment of intraindividual effects, rather than focusing on group differences or group norms.

Finally, in the world of clinical pain, the most psychome- trically sound measures and the most rigorous research de- sign are considered to be of relatively little value if they are not clinically relevant. That is, the research must translate into clinical practice; the measurement tools must be con- cise and easy to use,the treatment protocols easy to follow, and the outcomes easy to document (see Herr and col- leagues, this issue, for an example).81 In clinical settings such as nursing homes, clinics, and hospitals, documenta- tion of treatment and outcomes is critical. In hospitals, the new JHACO regulations require it. Still, changing health care systems, and practitioners’ behavior within those sys- tems, is more complicated. Education and training in pain management is one important component. Equally impor- tant, however, are the requisite administrative and policy changes that enable change to take place. In nursing homes, certified nursing assistants provide the majority of direct care to elderly residents. These individuals have minimal training in general, and even less training in pain assessment. Still, they are the critical link in the care system because they work most directly with persons with dementia and must identify and report pain presence to the nurses and other providers who can treat it.82 Re- search-based training for nursing home staff on many clin- ical issues has been initiated and instituted,75,76 and could be reasonably extended to include pain management.

SUMMARY

Pain is a significant problem for older adults,which has the potential to negatively impact independence, functioning, and quality of life. In order for pain to be effectively man- aged, it must first be carefully and systematically assessed. Pain assessment in persons with dementia should start with self-report of pain, but must incorporate assessment of nonverbal pain behaviors. Pain treatment in older adults should be tailored to the type and severity of pain. Pain medications can be safely used in elders, and may be more effective when combined with non-pharmacological treat- ment. Assignment: Pain Assessment in Elderly Patients with Dementia. Despite the preponderance of research on pain, rel- atively few investigations have focused on pain in elderly adults in general, and on persons with dementia specifi- cally. Researchers must carefully consider a number of methodological issues when conducting research in this area. Better strategies for assessing pain, using observa- tional methods, are the cornerstone of effective pain man- agement in persons with dementia. Practitioners must be knowledgeable about pain treatment, and use both pharmacological and non-pharmacological strategies to relieve pain. Moreover, clinicians must be aware of the barriers to effective pain management and work to over- come them. In so doing, they may make significant con- tributions to managing pain in persons with dementia, and improving the quality of life of this vulnerable popu- lation of elders.

Ann L. Horgas, RN, PhD, is Associate Professor in the College of Nursing at the University of Florida.

Susan M. McLennon, MSN, ARNP, is doctoral student in the College of Nursing and a research trainee in the University of Florida Aging Training Program. She is also a predoctoral scholar in the John A. Hartford Foundation Building Geriatric Nursing Capacity Program.

Amanda L. Floetke, MSN, ARNP, is a doctoral student in the College of Nursing and a research trainee in the University of Florida Aging Training Program. She is also a predoctoral scholar in the John A. Hartford Foundation Building Geriatric Nursing Capacity Program.

Address correspondence to: Ann L. Horgas, RN, PhD, College of Nursing, University of Florida, PO Box 100187-HSC, Gainesville, FL 32610. E-mail: ahorgas@nursing.ufl.edu.

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