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Nursing Care of Pain in Persons with Dementia
Ann L. Horgas and Toni L. Glover
BACKGROUND AND SIGNIFICANCE
Nurses provide care to older adults with dementia across care settings, including home care, primary care, acute care, and long-term care. Older adults (age 65+) account for half of all hospital inpatient days  and approximately 50% of admissions to the intensive care unit (ICU) [37, 46]. It is estimated that five million people currently suffer from Alzheimer’s disease (AD) or a related form of dementia in the United States . Globally, this number is estimated as more than 24.3 million people with this disease . Furthermore, with the aging of the population, the number of individuals with dementia is expected to be more than double by 2050 . Thus, nurses should interact with persons with dementia across multiple care settings and need to be knowledgeable about the most effective strategies for managing pain in this population.
Over the past two decades, clinical and empirical efforts have been undertaken to improve the assessment and management of pain in older adults. For instance, in 2001, The Joint Commission (TJC)  in the United States mandated pain assessment and management as part of the hospital survey and accreditation process. This accrediting body asserted that patients “have the right to appropriate assessment and management of pain” and declared pain as the “fifth vital sign” . In addition, multiple clinical guidelines have been developed by leading scientific and clinical organizations including the American Geriatrics Society [3, 20], American Pain Society , and the American Society for Pain Management Nursing . Despite the TJC mandate and the dissemination of clinical guidelines aimed at improving pain management, there is persistent evidence that pain management for older adults in general, and specifically among persons with dementia, remains suboptimal across care settings [24, 26, 29, 42, 54]. Thus, the purpose of this chapter is to provide the best evidence on the assessment and treatment of pain in older adults with cognitive impairment from a nursing perspective.
NURSING CARE OF PAIN IN PERSONS WITH DEMENTIA
The management of pain is fundamental to the role of the nurse. Pain is defined a complex, multidimensional subjective experience with sensory, cognitive, and emotional dimensions [3, 39]. In the nursing literature, Margo McCaffery’s classic definition of pain remains relevant. She states that “Pain is whatever the experiencing person says it is, existing whenever he says it does” . While focusing on the fact that pain is a subjective experience and that patients’ self-report is fundamental to pain assessment, this definition also highlights the difficulty inherent in assessing pain among persons with dementia for whom self-report is often impaired. There is no objective measure of pain; the sensation and experience of pain is subjective. As such, there is a tendency for clinicians to devalue or distrust patients’ reports of pain, especially among cognitively impaired adults. Pasero and McCaffery  provide a comprehensive chapter on biases, misconceptions, and misunderstandings that hinder clinicians’ assessment and treatment of patients who report pain. These issues apply to patients across the life span and across conditions, and led the authors to conclude the following:
A veritable mountain of literature published during the past three decades attests to the undertreatment of pain. Much of this literature is consistent with the hypothesis that human beings, including health care providers in all societies, have strong tendencies or motivations to deny or discount pain, especially severe pain, and to avoid relieving the pain. Certainly we should struggle to identify and correct personal tendencies that lead to inadequate pain management, but this may not be a battle that can be won. Perhaps it is best to assume that there are far too many biases to overcome and that the best strategy is to establish policies and procedures that protect patients and ourselves from being victims of these influences (p. 48).
Among older adults, there is persistent evidence that pain is underdetected and poorly managed [24, 29, 30, 53]. Unmanaged pain contributes to functional disability, poor sleep, and depression. There are a number of factors that contribute to the undertreatment of pain, including individual- and caregiver-based factors. Individual factors that impair appropriate pain management include the belief that pain is a normal part of aging, concerns about being labeled a hypochondriac or complainer, fear of the meaning of pain in relation to disease progression or prognosis, and fear of opioid addiction and analgesics [2, 19]. Dementia complicates pain assessment and management process because, as the disease progresses, it impairs older adults’ ability to recognize, recall, and report pain [29, 53]. In advanced dementia, unmanaged pain exacerbates cognitive impairment and contributes to an increase in disruptive behaviors [4, 34, 40].
Pain assessment and management are also influenced by provider-based factors. Health-care providers often share the mistaken belief that pain is a part of the normal aging process and avoid using opioids due to fear about potential addiction and adverse side effects . Nurses may experience frustration related to difficulties in obtaining an order for pain medications . Dementia also confounds the pain management process.
Evidence indicates that cognitively impaired elders are prescribed and administered significantly less analgesic medication than cognitively intact older adults [30, 41]. This finding may reflect cognitively impaired adults’ inability to recall and report the presence of pain to their health-care providers. It may also reflect caregivers’ difficulty detecting pain in this population. There are a number of measurement tools currently available to assess pain in this population (see Chapters 9 and 10 for a more thorough discussion of pain measurement). In addition to measurement tools, however, nurses must be vigilant for indicators of pain in older adults with dementia. The most appropriate approach to providing care to this population starts with the acknowledgment that comorbidities (e.g., osteoarthritis, cancer), procedures (e.g., surgery), and activities (e.g., physical manipulation) can cause acute pain or can exacerbate underlying persistent pain. Thus, the assumption should be that pain exists, unless the evidence indicates otherwise. In addition, nurses and other health-care providers should systematically examine their own biases, beliefs, and behaviors about pain management, and should elicit and understand the challenges, beliefs, and preferences their patients bring to the situation as well .
The trajectory of dementia is insidious, and there is no cure for this life-limiting disease. Early integration of palliative care is warranted to clarify goals of care, assist with eventual care transitions, and manage symptoms to improve quality of life and maintain optimal function [9, 47, 55] (see Chapter 22 for a more thorough discussion of palliative care). Many caregivers of loved ones with dementia are burdened with health-care decision-making in advanced dementia because they never discussed goals of care and do not know what the patient would have wanted done to preserve life or manage pain and related symptoms with advanced cognitive impairment. Early integration of palliative care can allay patient and caregiver burden. The Dutch End of Life Dementia Study found, on average, only half of residents with dementia in long-term care settings died peacefully, as perceived by their caregivers . Pain was the most common symptom at end of life .
Nursing Assessment of Pain in Persons with Dementia
Pain management requires comprehensive assessment, appropriate pain treatment, and regular reassessment. Thus, nurses must utilize a number of resources and skills to assess pain in persons with dementia. Patients’ self-report is considered the gold standard for pain assessment [2, 3]. The first principle of pain assessment is to ask about the presence of pain, even among persons with dementia . There is evidence to suggest that persons with moderate to severe dementia are able to provide self-report of pain if asked with a simple question and allowed sufficient time to answer [15, 32, 56].
In patients with dementia who cannot provide self-report, other assessment approaches must be used to identify the presence of pain. A hierarchical pain assessment approach is recommended that includes four steps: (1) attempt to obtain a self-report of pain; (2) search for an underlying cause of pain, such as surgery, procedure, or skin breakdown; (3) observe for pain behaviors; and (4) seek input from family and caregivers [25, 57]. If any of these steps are positive, the nurse should assume that pain is present and initiate a trial of analgesics in addition to nonpharmacological approaches to reduce pain. Reassessment of pain behaviors after an intervention should be observed to evaluate effectiveness.
Observational techniques for pain assessment focus on behavioral or nonverbal indicators of pain [20, 25, 29]. Behaviors such as guarded movement, bracing, rubbing the affected area, grimacing, painful noises or words, and restlessness are often considered pain behaviors [27, 29]. Caregivers should be encouraged to assess for these behavioral indicators of pain. In the acute care setting, vital signs are often considered physiological indicators of pain. It is important to note, however, that elevated vital signs are not considered a reliable indicator of pain, although they can be indicative of the need for pain assessment [25, 43].
Persons with dementia may also express pain in atypical ways . For instance, changes in behavior may signal the presence of pain. Among nursing home residents with dementia, pain contributes to disruptive or challenging behaviors . In a large sample (N = 56,577) of nursing home residents with dementia, residents with more severe pain were less likely to display wandering behaviors, but more likely to display aggressive and agitated behaviors. Pain was positively correlated with disruptive behaviors such as aggression and agitation, but negatively related to disruptive behaviors that were accompanied by locomotion (e.g., wandering). These findings indicate that effective pain management may help to reduce aggression and agitation, and to promote mobility in persons with dementia.