By Edward Cisek, PhD, Research Associate, Bon Secours Center for Research in Geriatric Care
There is a growing segment of the population that is susceptible to losing the ability to report that they are experiencing pain. According to a recent report by the Alzheimer’s Association, there are an estimated 5.3 million people in the United States who are living with Alzheimer’s disease (2009). Pain is defined as “whatever the experiencing patient says it is, existing whenever the patient says it does” (McCaffery, 1968, p. 95). This common definition of pain captures the subjective nature of pain and maintains an individual’s dignity. As individuals reach the moderate and severe stages of Alzheimer’s and other dementias, their ability to communicate their needs with language, including the need for pain relief, is lost.
Possible Indications of Pain
How then can we know if those in the mid- to late-stages of dementia are experiencing pain? Although they can no longer self-report pain accurately, do they still have a way of communicating discomfort? What form of communication remains for them? One way for the concerned caregiver to detect possible pain is to observe persons with dementia for the presence and/or absence of certain behaviors. This behavior may be subtle, like a slight frown or fidgeting or a reduction in movement. Or it may be more pronounced, like grimacing, continued groaning, or physical or verbal aggression. The American Geriatrics Society Panel on Persistent Pain in Older Persons (2002) identified six common pain behavior categories to diagnose pain in cognitively impaired older persons:
- facial expressions such as grimacing or rapid blinking
- verbalizations or vocalizations such as moaning, noisy breathing, or calls for help
- body movements such as increased pacing, guarding certain areas of the body or having a tense body posture
- changes in interpersonal interactions such as becoming disruptive or socially withdrawn
- changes in activity patterns or routines such as a change in appetite or sleep pattern
- mental status changes such as increased confusion or irritability
As the ability to communicate is lost, the keen observation of caregivers becomes more important. Informal caregivers should keep an eye out for one or more of the behaviors listed above. In organizations that serve cognitively impaired older adults, staff can be trained to use one of many tools designed to assess for pain. The City of Hope Pain & Palliative Care Resource Center (2008) identified 17 such tools, all of which include at least one of the behaviors mentioned above.
There are other questions you should consider if you observe behavior that may indicate pain. Are the person’s basic needs being met? We have all experienced discomfort related to hunger, thirst, or extremes of environmental temperature. Are the behaviors surfacing when the person is being moved or during the provision of personal care, when pain is more likely to occur? If so, talk to the person’s doctor about the possibility of administering pain-relieving medications before initiating activities that may cause pain. Does the person have a history of, or currently have, a medical condition that is likely to cause pain, such as osteoarthritis? Research has found that persons with or without cognitive impairments did not differ with respect to the prevalence of conditions likely to cause pain (Proctor & Hirdes, 2001). How did the person relieve pain in the past? Sometimes non- pharmacological options, like massage or even just a cold or hot pack, may suffice.
Next Steps If Pain Is Suspected
What should you do if you think pain is present? Discuss with the doctor whether pharmacological or non-pharmacological interventions would be helpful. Also discuss the risks and benefits of using various types of pain medications. Some analgesic (pain-relieving) medications, like aspirin or acetaminophen (Tylenol), can be bought over-the-counter, and without a doctor’s prescription. If stronger medications are needed to relieve pain, a prescription for that medication, which may be a narcotic drug, will be needed. All medications have side effects, but stronger pain medications may have undesirable side effects, like constipation. The doctor prescribing a drug that may cause a problematic side effect may also prescribe a medication that will prevent the side effect from occurring. If a strong pain medication is prescribed some people may be concerned that the person with dementia will become addicted. Because dementia is a terminal disease (i.e., one that will eventually result in a person’s death unless they succumb to another disease first), addiction will generally not be a major concern. The compassionate course of action should be to address pain so as to help the cognitively impaired person be as comfortable as possibleAGS Panel on Persistent Pain in Older Persons (2002). The management of persistent pain in older persons. Journal of the American Geriatrics Society, 50, S205-S224. Alzheimer’s Association (2009). 2009 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 5(3). 234-270. City of Hope Pain & Palliative Care Resource Center (2008). State of the art review of tools for assessment of pain in nonverbal older adults. Retrieved November 3, 2009 from http://prc.coh.org/PAIN-NOA.htm. McCaffery, M. (1968). Nursing practice theories related to cognition, bodily pain, and man-environment interactions. Los Angeles: University of California Los Angeles Students’ Store. Proctor, W.R., & Hirdes, J.P. (2001). Pain and cognitive status among nursing home residents in Canada. Pain Research and Management 6(3), 119-125.