DIMENSIONS Summer 2008

FOR THE CAREGIVER
Recognizing and responding to pain in loved ones with dementia

by Elizabeth Sharpe

When her 90-year-old mother Ruth says, “I hurt,” her daughter Emily worries. It is Mother’s Day and her mother has fallen not once but twice. She asks Ruth where, where is the pain? Ruth rubs the outside of her leg. She can’t explain, can’t explain how bad the pain is, or even that it’s really her hip that hurts. Twenty-four hours later, Ruth can’t move and the paramedics rush to take her to ER. The doctor gives Ruth medicine for the pain, for the severe bone degeneration aggravated by the falls. Emily has cared for Ruth for the last eight years. Then two years ago, Ruth had a stroke. That’s when Ruth’s cognition and ability to explain started going downhill and her day-to-day pain became more and more difficult to pinpoint, in words anyways. In addition to shingles on the right side of her face and along her scalp, Ruth had an ulcer-type sore on her ankle that took three months to heal.

Emily wants to help Ruth feel better, to relieve the pain, but Ruth often has difficulty explaining what hurts or how much it hurts. She gets confused about where the pain is coming from. When one of Ruth’s eyes was swollen shut from the shingles, Emily took Ruth in to see the doctor. Ruth told the doctor the eye didn’t hurt. “It itches,” she said instead. Even so, Emily is sure the hurt is real. She can sometimes tell when her mother is in pain, even when Ruth doesn’t say anything, just by “reading” Ruth’s face. This caregiver’s experience in trying to recognize and respond to a loved one in pain is not unique. Nearly 4.5 million Americans have dementia and much of that number includes Alzheimer’s disease, a disease that progressively debilitates both cognition and language.

With increasing difficulty to communicate through words, a person with dementia has more and more trouble articulating pain or level of pain, too. Yet, most pain assessment tools rely on self-reporting. For example, a question like the following would be difficult for a person with dementia: Given a scale of 1 and 10, with 10 being excruciating or unbearable, how would you rate the pain you experienced after this morning’s fall? In order to respond accurately, the person must be able to understand the rating system, recall the event that caused the pain in a specific time frame, as well as interpret the feeling in the body as a “painful event.”

Without a more reliable system of evaluation, many cases remain under diagnosed or under treated. In fact, research studies have shown that people with dementia are less likely to receive treatment than their cognitively-intact peers, despite similar pain-related conditions.

Pain can adversely impact the quality of life of a person’s day-to-day life, their ability to take care of daily tasks and to remain mobile. Untreated pain can lead to a number of conditions detrimental to health: depression, sleep disturbance, impaired functional abilities and cognitive function and diminished socialization. Lack of treatment may also magnify problems that lead to more health care and as a result, further costs. To ameliorate the pain their loved ones may feel, caregivers should go beyond words. Caregivers like Ruth’s daughter take a more comprehensive approach to identifying pain in loved ones and in managing their pain. This approach may include the following steps:

1. Assume pain is present if the person suffers from injury, a surgical procedure, is diagnosed with another disease, or a physical examination confirms pain is present.
2. Establish what “normal” behavior is for this person. How does this person act in usual activities and in his or her regular environment? Then monitor for changes in behavior that may be associated with pain using the common behavioral indicators (see table on facing page). Take note of behaviors during movement as well as during rest.
3. Remember that nonverbal cues and behavioral changes are common, but some people demonstrate little or no specific behavior associated with severe pain. Still other people may present with signs of agitation or disruptive or aggressive behaviors.
4. Practice regular non-drug interventions for pain management. These interventions target behavior disturbances for pain as well as discomfort in general, “unmet needs” such as thirst or uncomfortable clothing. The symptoms or behaviors may be identical in both situations, according to A. Lyn Snow and John Shuster in the November 2006 issue of the Journal of Clinical Psychology. According to the authors, non-drug interventions include “reduced or increased environmental stimulation (which may include noise, activity, physical materials, changes in routine or in the environment); soothing and supportive verbal communication; soothing and supportive touch; physical exercise and movement; sensory stimulation (which include activities that arouse smell, taste, or touch); music therapy; and therapeutic massage.”
5. Analgesic interventions may be necessary in conjunction with non-drug therapy if non-pharmacological interventions are not successful or if physical examination or observation indicates the presence of pain. If medication appears to provide relief, pain may be the likely cause of the loved one’s distress. Even so, be vigilant for potential side effects or further changes in behavior.

Without a doubt, perception of pain is a personal, subjective experience, based on factors as varied as age, endurance, and even past memories and experiences. Trial and error seems to be more the norm than the exception, and with such a vulnerable population, sometimes no single prescription can ameliorate the pain. But with patience and attentiveness, caregivers can surely make a difference.

Researchers have found that each person’s behavior is idiosyncratic; behaviors can vary from individual to individual. Various tools or approaches exist to determine pain in persons with dementia. One such tool is the American Geriatrics Society’s guidelines for persistent pain in older adults. It cites common pain behaviors in cognitively impaired elderly persons.

Facial expressions

• Slight frown, sad or frightened face
• Grimacing, wrinkled forehead, closed or tightened eyes
• Any distorted expression
• Rapid blinking

Verbalizations, vocalizations

• Sighing, moaning, groaning
• Grunting, chanting, calling out
• Noisy breathing
• Asking for help
• Verbally abusive

Body movements

• Rigid, tense body posture, guarding
• Fidgeting
• Increased pacing, rocking
• Restricted movement
• Gait or mobility changes

Changes in interpersonal interactions

• Aggressive, combative, resisting care
• Decreased social interactions
• Socially inappropriate, disruptive
• Withdrawn

Changes in activity patterns or routines

• Refusing food, appetite change
• Increase in rest periods
• Sleep, rest pattern changes
• Sudden cessation of common routines
• Increased wandering

Mental status changes

• Crying or tears
• Increased confusion
• Irritability or distress

But note, too, that some patients demonstrate little or no specific behavior associated with severe pain.

References:
Herr, K., Bjoro, K., & Decker, S. (2006). Tools for assessment of pain in nonverbal older adults with dementia: A State-of-the-science review. Journal of Pain and Symptom Management, 31(2): 170-192.
Snow, A.L. & Shuster, J.L., Jr. (2006). Assessment and treatment of persistent pain in person with cognitive and communicative impairment. Journal of Clinical Psychology, 62(11): 1379-1387.
AGS Panel on Persistent Pain in Older Persons (2002). The management of persistent pain in older persons. Journal of the American Geriatrics Society, 50(s6), 205-224.