Approximately 35 million individuals worldwide have dementia, and one-half experience pain on a regular basis.
However, assessing and treating pain in these individuals remains complicated and inadequate.1 In addition, according to Wilco P Achterberg, MD, PhD, of Leiden University Medical Center in the Netherlands, pain is commonly the underlying cause of behavioral symptoms in individuals with dementia.
This can lead to inappropriate diagnosis and management as well as contribute to additional complications. “Pain and dementia gain equally high prevalence in the oldest old. The combination of the two conditions produces miserable living conditions for the patients and enormous scientific, as well as clinical, challenges for those providing treatment and care,” said Achterberg.
In a systematic review, Achterberg and colleagues evaluated the challenges in recognizing and assessing pain as well as in practicing good pain management. The investigators found that pain perception varies depending on the individual and dementia type.1
“There is considerable uncertainty within the literature on the impact of dementia neuropathology on pain perception and processing, where white matter lesions and brain atrophy appear to influence the neurobiology of pain. These brain changes can make people with dementia experience pain differently,” said Achterberg.
Limitations of Self-Reporting Pain
Self-reporting is the most commonly used method for cognitively intact people to describe pain, but individuals with severe dementia generally can’t remember, interpret, or respond to pain.
The most current evidence on this topic suggests that people with dementia feel pain, but they may experience it differently than people without dementia, according to Ann L. Horgas, PhD, RN, of University of Florida College of Nursing in Gainesville, Florida.
“Thus, it is important to approach the care of older adults with dementia under the presumption that they experience pain. The goal is to try to identify verbal and nonverbal indicators of pain in this population. It is important to recognize that these indicators may differ between people,” said Horgas.
Although there are a number of tools available to assess these cues, the psychometric quality and clinical utility of these remain uncertain. According to Achterberg, these observational assessment scales are not often used in clinical practice.
It remains difficult to assess nonverbal cues because of the complexity and type of dementia, but research efforts continue to focus on behaviors as an indication of the presence and severity of pain in these patients.
In one study, Horgas and Hyochol “Brian” Ahn, PhD, also of the University of Florida College of Nursing in Gainesville, evaluated the relationship between pain and disruptive behaviors, including wandering, aggression, and agitation, in nursing home patients with dementia.2
“We found that more severe pain is associated with more aggression and agitation, but not with wandering. Pain exacerbated only nonlocomotive behaviors, such as aggression and agitation,” said Ahn.
One limitation of the study is that it was a descriptive and cross-sectional design, so investigators were not able to establish a causal relationship. “Also, we found pain only exacerbates nonlocomotive disruptive behavior, such as aggression and agitation, which is contradictory to previous studies that found that pain is positively associated with wandering behaviors [in patients] with dementia,” said Ahn.
Pain Treatment Remains Inadequate for Dementia Patients
There are so few statistically well-powered trials that the evidence for efficient treatment with analgesics is also limited.1 According to Achterberg, “the most promising evidence supports the use of stepped treatment approaches, and indicates the benefit of pain and behavioral interventions on both these important symptoms.”
Insufficient training and education for health care professionals at all levels is another barrier to treating pain in patients with dementia, and this is where evidence-based guidance is urgently needed.1
“Generally speaking, physicians are not well equipped to assess pain and reluctant to treat pain in persons with dementia [using] nonevidence-based prejudice. To address the current inadequate management of pain in dementia, a comprehensive approach is needed,” says Achterberg.
Horgas noted, “Because people with dementia gradually lose the ability to communicate, clinicians must rely on careful pain assessment that evaluates verbal and nonverbal indicators of pain. In some residents, severe pain may be expressed through disruptive behaviors – particularly aggression and agitation. Thus, it is important to consider pain as a contributing factor to disruptive behaviors and changes in behavior in persons with dementia.”
Reviewed by: Pat F. Bass III, MD, MS, MPH