Keywords

 

Authors

  1. Kovach, Christine R. PhD, RN

Abstract

Asessing and treating physical pain and affective discomfort in people who can no longer report on their internal states is quite challenging. Since little is known about best practice in pain management for people with dementia, health care providers often learn while "in the trenches." This article reports one person's professional journey in trying to understand the needs of people with dementia. In addition, a clinical tool, the Assessment of Discomfort in Dementia (ADD) Protocol will be described as a systematic method for improving recognition and treatment of discomfort in clinical practice.

 

It is well established that pain in people with dementia is underrecognized. 1 Unresolved pain signifies undue human suffering. For those with dementia, control of pain is a significant challenge. The source of their pain may be either physical or affective and, further, those with dementia often cannot comprehend, differentiate, or report the pain experience. In addition, there is a common symptom presentation with both physical and affective pain, and thus assessment must be directed toward differentiating physical pain from affective pain. In this article, the term physical pain refers to an unpleasant internal state that results from physiological stimuli. The term affective pain refers to an unpleasant internal state that results from nonphysiological stimuli.

 

Disagreement exists regarding whether dementia influences physiological pain pathways and perception of physical pain. With greater understanding of the multiple cortical and subcortical structures involved in intensifying, attenuating, or creating pain states, come more questions about the pain experience of people with cognitive impairment. Pain is affected by levels of arousal and expectation, and memory of pain clearly plays a role in phantom limb pain. However, one study actually showed that people with dementia had more primitive pain reflexes than a comparison group of cognitively intact older adults. 2 An example of a primitive response is withdrawal of the painful part to touch and muscle tension. Conversely, responses to pain that are influenced by sociocultural or environmental factors may be more prevalent in cognitively intact individuals and may include stoicism and a decrease in behavioral expressions of pain. Despite multiple studies of pain perception in people with dementia, the most that can be said is that there is evidence that there may be some decrease in pain perception in people with dementia. 3-6

 

Regardless of whether or not pain perception is decreased, ample evidence exists that pain is undertreated for people with dementia. 7,8 Unresolved physical pain is linked to numerous negative sequelae including increased morbidity, increased mortality, sleep disturbances, decreased socialization, malnutrition, depression, impaired immune function, impaired ambulation, and increased health care use and costs. 9-13 Likewise, affective pain has been linked to cognitive, social, and functional decline. 14-16

 

For the person with late-stage dementia, a large amount of pain comes from nonphysiological sources, such as from difficulty sorting out and negotiating everyday life activities. 17 The etiology for affective pain experienced by people with dementia has been postulated to arise from multiple sources including environmental stress and lack of meaningful social input.

 

The focus of this issue on the lived experience of Alzheimer's disease provides an opportunity for sharing the lessons I have learned from people with Alzheimer's disease, and my growth as a professional in attempting to understand and treat both physical and affective pain in people with dementia. In this article I disclose some of my most difficult lessons in understanding the experience of persons with Alzheimer's disease and related disorders. The experiences of these residents, though often painful to all, have profoundly shaped my work as a researcher, teacher, and clinician. The presentation of cases and description of my professional journey is followed by a description of a clinical protocol to assist practitioners in assessing both physical and affective pain in people with dementia.