"Alzheimer's is, in fact, like an insidious fog, barely noticeable until everything around has disappeared. After that, it is no longer possible to believe that a world outside fog exists" (Bayley,1999,p.218).
Few challenges currently facing nurses are more difficult than those pertaining to the quality of care older adults receive near the end of life. The assessment and management of pain is central to end-oflif e care and of great concern to many Americans. Yet, there is wide consensus in scientific communities, the law, social sciences, humanities, and the popular press that inadequate treatment of pain is the rule in the United States and most developed nations Martino, 1998).
Management of pain in individuals with Alzheimer's disease and other dementias is particularly challenging. Individuals with dementia are reported to be especially at risk for unidentified and undertreated pain, more so than their non-demented peers (American Geriatrics Society, 1998). Two cultural beliefs influence undertreatment of pain in this population: (1) that nothing can be done for individuals with dementia and (2) that individuals with dementia do not experience pain and therefore, analgesia and other modalities to reduce pain are unnecessary. The authors propose a practice ethic based on a reawakened beneficence toward this vulnerable population. This ethic
acknowledges the high likelihood that many individuals with dementia experience significant pain. It reinforces the ethical obligation of nurses to do good for those within their care and to avoid harm. It proposes the use of pain management methods sensitive to the disabilities associated with dementia and individualized for each older adult.
This article provides a brief review of the literature on the undertreatment of pain and the barriers to effective relief of pain in individuals with dementia. Recommendations are given for improved pain management. These recommendations are based on the three following principles drawn from theoretical concepts for special care units for individuals with dementia, developed by the U.S. Congress Office of Technology Assessment (1992, pp. 17-21):
* Something can be done for individuals with dementia.
* Identifying factors which cause excess disability in individuals with dementia will reduce excess disability and improve the individual's functioning and quality of life.
* Behavior of individuals with dementia represents understandable feelings and needs, even if the individuals are unable to express the feelings or needs. Identifying and responding to those feelings and needs will reduce the incidence of behavioral symptoms.
UNDER-TREATMEMT OF PAIN IN DEMENTIA
Recent studies have demonstrated that individuals with dementia are especially at risk for unidentified and under-treated pain (American Geriatrics Society, 1998). In one study, significant differences were reported between a demented and non-demented sample in the amount of opioid received after surgery for hip fracture (Feldt, Ryden, 8t Miles, 1998). In nursing homes as well, cognitively impaired participants have been prescribed and administered significantly less analgesic medication than their cognitively intact peers (Bernabei et al., 1998; Horgas & Tsai, 1998; Kaasalainen et al., 1998). One study found that 60% of nursing home residents who had at least one diagnosis known to cause pain had not received analgesic medication in the previous month (Feldt, Warne, & Ryden, 1998). Horgas and Tsai (1998) report that behavioral ratings of disorientation, withdrawal, and functional impairment were the strongest predictors of administered analgesics in nursing home residents; more cognitively impaired residents received less analgesia.
BARRIERS TO EFFECTIVE RELIEF OF PAIN
In spite of efforts to improve the treatment of pain nationally, many barriers remain. An important barrier is that nurses and other health professionals lack the knowledge and skill to assess pain in individuals with dementia and may believe that individuals with dementia are not able to report pain or that they do not experience pain. In addition, nurses may not realize that some of the behavioral symptoms associated with moderate to severe dementia (e.g., aggressiveness, resistiveness to care, and certain vocalizations) may be an indication of pain. For example, in a study to examine the reiationship of pain and aggressiveness, researchers found that aggression scores were significantly higher in demented individuals suffering from arthritis and in those with two or more painful conditions Feldt, Warne, & Ryden, 1998). Aggressiveness and resisting care may be attempts to guard against discomfort associated with movement (Beck, Baldwin, Modlin, &: Lewis, 1990; Ryden, Bossenmaier, & McLachlan, 1991). Vocalizations that may be particularly suggestive of pain include moans, growls, saying
SUMMARY TABLE FOR COMFORT AND PAIN RELIEF IN DEMENTIA
"ouch," and nonspecific increases in the loudness of existing vocalizations (Sloaneetal.,1997).
A particularly tenacious practice that that acts as a barrier to effective pain management is the use of analgesic medications on an "as-needed" (pro re nata [PRN]) basis rather than using them on a scheduled, aroundthe-clock basis. The use of PRN dosing leads to under-treatment of pain partly because it requires the individual to request medication. Cognitively impaired individuals are often unable to initiate such a request, even though they may be able to reliably report pain when asked directly.
The reluctance of many health care providers to administer opioids to elderly individuals is a third barrier to effective pain management. Many erroneously believe that older adults cannot tolerate opioids (Pasero & McCaffery, 1996) and are reluctant to increase doses (McCaffery & Ferrell, 1991). Such beliefs may be even stronger toward individuals with dementia. Martino (1998) identified a generalized fear of opioids from focus-group interviews with physicians, nurses, pharmacists, patients, families, and various other stakeholders and from nationally-based studies. Some of the reasons reported for underprescribing opioids included:
* Fear of becoming a party to euthanasia.
* Lack of awareness about developments in pain relief medications and the extent to which pain can be managed with opioids.
* Excessive concern about side effects.
* Failure to conduct, as sound practice, thorough and frequent reevaluation of pain status.
The fear of opioid addiction is so pervasive, both societally and in the health professions, that the term "opiophobia" has been coined to distinguish the fear of the legitimate use of opioids from concerns about illegal drug use (Morgan, 1986).
A fourth barrier to effective relief of pain in this population is the under-diagnosis of dementia. This is problematic in outpatient settings, hospital inpatient settings, and even in long-term care facilities (Callahan, Hendrie, & Tierney, 1995). Accurate information about cognitive status is essential to tailoring pain assessment methods to this group.
A NEW BENEFICENCE
A new beneficence is needed to promote comfort and relieve pain in individuals with dementia. Beneficence asserts an obligation to confer benefits as well as to actively prevent and remove harms. Beneficence is an unchallenged moral obligation in nursing. Active promotion of the welfare of patients - not merely avoiding harm - is the goal of health care (Beauchamp & Childress, 1989). The harms to be prevented, removed, or minimized include pain, suffering, disability, and death from injury and disease. The key to an adequate ethics of dementia is full attention to the many ways of enhancing the non-cognitive aspects of human well-being while not underestimating remaining capacities (Post, 1995).
PRINCIPLES OF A NEW BENEFICENCE
The principles or rules of conduct that set the standards for judging professional behavior in a practice ethic tend to develop slowly over time from a variety of sources. The three principles discussed in this article are supported by the work of gerontologists and specialists in dementia care. The first principle pertains to active assessment and promotion of comfort. The second focuses on reducing excess disability through effective management of pain and discomfort. The third centers on behavioral symptoms that may be precipitated by pain or discomfort. Together, they are a strong benchmark in an ethic of dementia care (Post, 1995). See Table 1 for a summary of the principles of pain relief measures.
Principle 1 is "Something can be done for individuals with dementia." Something can be done to identify and treat pain in this population, even though it can be very complex and challenging. Many in this population could experience improved quality of life with the following changes in current practice: better assessment of pain, the use of regularly scheduled analgesic medications, and the use of opioid analgesic medications when needed.
Assessment of Pain. Direct questioning of all individuals with dementia who are still verbal should be the beginning of any assessment of pain. In general, pain complaints decrease with increasing cognitive impairment (Parmelee, Smith, & Katz, 1993). Clinicians and researchers alike have struggled with the question of whether individuals with dementia actually experience decreasing amounts of pain, or whether they have a decreased cognitive ability to adequately express pain or to understand and respond to standard pain assessment questions. Research conducted in the past decade suggests that individuals with dementia do experience pain. For example, one study found that 62% of cognitively impaired nursing home residents reported at least one pain complaint at the time of interview (Ferrei!, Ferrell, Sc Rivera, 1995). Another study of 758 nursing home and congregate apartment housing residents which included those with cognitive impairment, found that 80% reported at least one localized pain complaint (Parmelee, Smith, & Katz, 1993). Benedetti et al. (1999) found no difference in the detection of pain stimulus and in pain thresholds between a group with Alzheimer's disease and a normal group of the same age.
The ability of demented individuals to respond to pain intensity rating scales has been found to vary widely. For example, one study found that 87% of confused hospitalized older adults could respond to a single question, "Are you uncomfortable now?" (Miller et al., 1996), but only 27% could respond to a visual analog scale, even with cueing and encouragement by research assistants. On the other hand, another study found that 83% of nursing home residents with an average Folstein Mini-Mental State Examination score of 12.1, indicating moderate to severe cognitive impairment, could complete at least one of five pain intensity rating scales (Ferrell, Ferrell, and Rivera, 1995). However, these researchers also found that 17% of study participants who were still verbal, could not complete any of the quantitative assessment scales presented.
A variety of questions and intensity rating scales should be available to clinicians to meet the individual abilities of each older adult. Pain assessment should be conducted in a manner that is sensitive to the individual with dementia's disabilities. Because individuals with dementia often require time to assimilate questions and respond appropriately, have limited attention spans, and are easily distracted, it is helpful to provide visual cues in large print and prepare them by providing adequate ambient light and hearing devices when necessary (Ferrell, 1996). Frequent assessments of pain at the moment, rather than pain in the past week or past month are required. Words other than pain, such as discomfort, uncomfortable, hurting, aching, or soreness may need to be used to describe the pain (Miller et al., 1996). In short, simple, frequent questioning about pain, using a pain descriptor that the demented individual responds to should be tried.
Assessment data for demented individuals who are non-verbal need to be obtained from a variety of sources other than the individual. One of the most important pieces of data is the presence of potentially painful medical conditions. One study found that 78.9% of a nursing home sample of demented residents had one or more pain-causing diagnosis (Feldt, Warne, & Ryden, 1998). Another study reported 43% of nursing home residents diagnosed with chronic brain syndrome also carried a potentially painful diagnosis (Marzinski, 1991). Common painful medical conditions in older adults include osteoarthritis, osteoporosis, history of hip and other types of fractures, back pain, and cancer (Ferrell, 1991; Portenoy, 1992; Wallace, 1994). These types of conditions are likely to remain painful even though verbal communication of the pain has declined or ceased.
Information about previous use of analgesic medication is useful when assessing chronic pain in this population. Moving to an institution or moving many times from one institution to another may result in the discontinuation of regular analgesic medication. Information from family members about previous analgesic medication use is vital and such medications should continue and be assessed for effectiveness at regular intervals.
Another important source of information is family members who often have information about the individual with dementia's previous history of pain (Ferrell, 1995). One study found that family caregivers used a variety of methods to assess pain including self reports of the individual with dementia; behavioral symptoms such as pacing, aggressiveness, and rubbing a body part; and knowledge of the individual's previous history of pain and manner of expressing pain (Waldo, 1996). Waldo also found that in the later stages of the disease, when the individual with dementia became unable to verbalize pain, family caregivers sometimes became uncertain about the presence of pain or assumed the pain was gone. Thus, in end-stage dementia, family members may not be as helpful in assessing current pain, and may need health professionals to perform this. Family members* contribution to pain assessment, however, may be as a source of historical information about pain, pain-related conditions, manner of expressing pain, and use of painrelieving medications.
In institutional settings, direct care providers, such as nursing assistants, can add valuable information to an assessment of pain. One study reported that nursing assistants used verbal and behavioral cues to know if an individual with dementia experienced pain (e.g., "she winces when we move her," "holds her head with her hands," "protects her arm and says ouch when we get her up and dress her") (Feldt, Warne, & Ryden, 1998). Although studies to date have documented the tendency of health professionals to underestimate the severity of pain (Wallace, 1994; Zalon, 1993), at the very minimum, direct care providers should be taught to look for and repon any indications that their residents with dementia are experiencing pain.
Scheduled analgesic medication. Administration of analgesic medications on a scheduled basis is the standard of practice for individuals with dementia who have daily or continuous pain. As-needed (PRN) administration of medication relies on individuals to make their pain and desire for medication known to a nurse or caregjver - an ability usually lost in individuals with dementia. Analgesic medication given on a schedule and preferably around-the-clock, provides continuous blood levels of medication and is more effective at preventing the wide peaks and valleys in pain relief. Around-the-clock scheduling is recommended by many pain experts and in clinical practice guidelines for the management of continuous pain (Jacox Carr, Payne, & the Cancer Pain Management Panel, 1994; McCaffery & Pasero, 1999).
Registered nurses can play a pivotal role in assuring greater use of scheduled dosing by converting PRN doses into scheduled doses. Both the California Board of Registered Nursing (in 1994) and the Oregon State Board of Nursing (in 1999) have clarified through policy statements that the nursing function of appropriate pain management includes intervening to treat pain before the pain becomes severe, and converting PRN analgesic medication orders to regularly scheduled doses as long as the frequency does not exceed the health care provider's order (California Board of Registered Nursing, 1994; Miller, 1999). Such practice is standard in hospice settings and thus, not without precedence.
Use of opioid analgesics. Opioids can be safely administered in elderly individuals if some simple guidelines are followed. Older adults have been shown to have increased opioid sensitivity, that is, they may experience a higher peak effect and a longer duration of pain relief from an opioid (Forman, 19%). Thus, it is best to start with an opioid dose 25% to 50% of the recommended adult dose and titrate upward slowly as needed (American Geriatrics Society, 1998; Pasero & McCaffery, 1996), or to "start low and go slow." Doses can be increased safely when increases are based on the response of the demented individual in terms of comfort and side effects rather than a preconceived notion of the milligram amount an individual "should" require. Opioids not recommended for use with older adults because they have toxic metabolites or long half-lifes or cause delirium and agitation include meperidine (Demerol), propoxyphene (Darvon), pentazocine (Talwin), and methadone (McCaffery & Pasero, 1999). Non-pharmacologie strategies, such as hot or cold packs, massage, changing positions, or range of motion can enhance the effect of opioids and are strongly recommended.
Excessive concern about the sideeffects of opioids has been identified as a major reason for the under-prescribing of opioids (Martino, 1998). Respiratory depression may be more feared than many other side effects because of the possibility that it might hasten death (Solomon & Joinings, 1998). However, worries about hastening death have been exaggerated, and when opioids are titrated appropriately, respiratory depression can almost always be avoided or minimized Jacox et al., 1994). Furthermore, it has long been argued by authorities in ethics (e.g., Hastings Center, 1987) that it is immoral not to provide adequate pain relief, even if death is hastened, so long as all other means have been tried, the risks have been disclosed to family members who agree to the plan, and the intent of the caregivers is to relieve suffering rather than to hasten death. According to Callahan (1995, p. 30), "there is as great an obligation to prevent a lin-
gering, painful, and degrading death as there is to promote health and life." The most effective strategy to use in managing any opioid-induced side effect is to decrease the dose of the opioid, but careful monitoring for respiratory depression is most needed when opioids are initiated.
FEATURES OF AGGRESSION AND RESISTlVENESS TO CARE REFLECTING UNTREATED PAIN IN PATIENTS WITH DEMENTIA
Principle 2 is "Identifying factors causing excess disability in individuals with dementia will reduce excess disability and improve the individual's functioning and quality of life." Excess disability refers to the gap between actual level of physical, psychological, or social functioning and potential functioning capacity (Brody, 1977). In individuals with dementia, excess disability is increased in all three domains by failure to attend to the management of pain. Rango (1985) proposed a therapeutic model for the proper care of demented individuals aimed at reducing excess disability by integrating palliative and rehabilitative care.
The most fundamental component of care, palliation, involves relieving the physical pain and psychological distress associated with the dementia itself or with any co-morbid state. Palliation is as important a concept for individuals with dementia as it is for individuals with other physical and psychological illnesses. The symptomatic relief of pain is essential to providing the maximum quality of life and increases the possibility that the second component, rehabilitation, is fully realized.
Rehabilitation encompasses efforts to achieve even small gains in the areas of psychomotor task performance, gait, and other physical movements. The rationale for a rehabilitative approach is that:
The management of dementing illness ought to be similar in purpose to the management of many common chronic diseases in which the therapeutic goal is to maintain function and to stave off (but not reverse) progressive deterioration (Rango, 1985, p. 836).
According to Ferrell (1996), deconditioning alone is an important cause of disability among older adults, and the importance of physical therapy, activities, exercise, and recreation cannot be overemphasized.
A small number of studies have been conducted on the benefits of such a rehabilitative approach in demented populations. Arkin (1999) reported significant improvements in aerobic capacity, weight lifting, and mood in community-dwelling samples of mildly to moderately demented individuals who participated in an aerobic and weight training intervention. Studies of exercise interventions by rehabilitation therapists in institutional settings have shown significant improvements in upper and lower body extremity strength and balance (Francese, Sorrell, & Butler, 1997), and in mobility skills (Pomeroy, 1993). Heacock et al. (1991) recommend engaging individuals with dementia in concrete activities such as ADLs as a way of keeping them involved in the world around them, providing a sense of belonging, helping prevent premature loss of contact with the environment, and assisting in maintaining independence as long as possible.
Specific rationale for a combined palliative and rehabilitative approach includes the following (Rango, 1985). First, a state of reciprocity exists between the two therapeutic objectives of palliation and rehabilitation.
An individual with dementia is unlikely to cooperate with efforts to improve or preserve functional capacities unless pain and distress have been relieved. Second, a management philosophy based on rehabilitative activism is intended to promote the quality of life and enrich the subjective life experience of the affected individual by maintaining function. Third, a rehabilitative approach strengthens the bonds of human solidarity between individuals with dementia and their caregivers. Increased solidarity, in turn, better enables caregivers to understand the needs of each individual with dementia as well as their unique expressions of pain and discomfort.
Principle 3 is "The behavior of individuals with dementia represents understandable feelings and needs, even if the individuals are unable to express the feelings or needs." Identifying and responding to thoák feelings and needs will reduce the incidence of behavioral symptoms." Behavioral symptoms commonly seen in dementia may be precipitated by physical pain or discomfort and their manifestation should trigger pain assessment. More and more dementia specialists are reaching the conclusion that behavioral symptoms must be viewed as expressions of potentially understandable needs. When these needs are responded to appropriately, quality of Ufe will be enhanced. In nursing, the Need-Driven DementiaCompromised Behavior (NDB) model of care has been developed by leading researchers (Beck & Vogelpohl, 1999; Kolanowski, 1999; Whall, 1999) as a framework to study and understand the constellation of behaviors that previously have been identified as disruptive or disturbing. These researchers suggest such labeling is not useful and can no longer be supported.
In the NDB model, behavioral symptoms are viewed as a result of relatively stable background factors, such as gender and health status, as well as more dynamic factors. Dynamic factors may be either physiological or psychological in nature and in addition to pain include hunger or thirst, elimination, sleep disturbance, psychosocial needs, and the physical and social environments. Because the proximal factors are more changeable than background factors, they can be the target of interventions to reduce the behavioral symptoms. Thus, the management of behavioral symptoms should include an assessment of pain, and pain and discomfort should be ruled out as a cause of new or escalating behaviors.
Three behavioral symptoms that have been the most commonly associated with pain include aggressiveness (Feldt, Warne, & Ryden, 1998); resistiveness to care (Mahoney, et al., 1999); and certain vocalizations, such as moaning, growls, nonspecific increases in the loudness of existing vocalizations (Sloane, et al., 1997) and yelling. These behaviors occur relatively frequently in the middle and late stages of dementia. Although these behavioral symptoms have lacked conceptual clarity and have been reported in the literature under labels such as agitation, assaultiveness, abusiveness, and combative behavior, recent work has increased their specificity and clarity. Behaviors included in the definition of aggression by Ryden (1988) and in the definition of resistiveness to care by Mahoney et al. (1999) are summarized in Table 2. These behavioral symptoms often occur during caregiving activities, such as dressing, transferring, or bathing, or when the individual with dementia is moved, touched, or redirected, suggesting that they are attempts to guard against discomfort associated with movement (Beck et al., 1990; Ryden, Bossenmaier, & McLachlan, 1991; Ryden & Feldt, 1992).
One study to date has specifically examined the relationship of pain to a behavioral symptom. Feldt, Warne, and Ryden (1998) examined pain in nursing home residents who were known to exhibit aggressiveness on a daily basis. Aggression scores were considerably higher (though not significantly higher) in participants with any pain-related diagnosis, and significandy higher in those suffering from arthritis and in those with two or more pain-related diagnoses.
Two recent studies have demonstrated promising results when behavioral symptoms were treated with analgesic medications. In one, an informal study in a small sample of nursing home residents, 650 milligrams of acetaminophen were given three times a day to participants who exhibited a "difficult" behavior (Douzjian et al., 1998). Five of eight residents showed a decrease in the number behavioral episodes and psychoactive drugs were discontinued in six residents. In another study, 104 residents from 32 nursing homes in one state received a pain assessment and treatment protocol which featured both pharmacological and non-pharmacological strategies (Kovach, Weissman, Griffie, Matson, & Muchka, 1999). A comparison of behavioral symptoms before and after initiation of the protocol demonstrated significantly fewer behavior symptoms. associated with discomfort after the protocol was implemented. Although each study had important methodological problems, including data collection on behavioral symptoms by the same nurses who implemented the intervention and lack of a control group, they offer very preliminary evidence that behavioral symptoms respond to treatment with analgesic medications. More research is needed in this area.
Although pain assessment and treatment in older adults with dementia is a complex clinical phenomenon, many in this population can be helped by renewed efforts to understand that each individual has unique ways of communicating pain and discomfort. Effective nursing action to treat pain requires listening to, and believing in, reports of pain as well as knowledge and skill in detecting pain among those unable to convey its presence verbally (Horgas & Tsai, 1998). A commitment to promoting good and avoiding harm is the practice ethic needed to accomplish improved comfort and quality of life for this vulnerable population.
The most important first step in improving pain control in individuals with dementia is to actively assess each individual for the presence of pain. Many individuals with dementia can answer simple questions about the presence of pain, but words other than pain may need to be substituted (e.g., discomfort, aching, soreness). Nurses need to consider all possible sources of information when assessing pain in older individuals with dementia. If an individual with dementia has identified pain, pain assessment at the moment usually must be performed because memory limitations prevent remembering or describing pain in the past. Nurses need to consider the possibility of pain when exploring strategies for reducing aggressiveness, resistiveness to care, and vocalizations such as yelling, calling out, and moaning. Studies of pain and pain management in cognitively impaired older adults in a variety of settings are needed to improve the quality of care to this vulnerable population.
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SUMMARY TABLE FOR COMFORT AND PAIN RELIEF IN DEMENTIA
FEATURES OF AGGRESSION AND RESISTlVENESS TO CARE REFLECTING UNTREATED PAIN IN PATIENTS WITH DEMENTIA