|Care Advocate Newsletter|
|Past Issues | Download PDF||November/December 2012|
But what about the person with dementia? Sometimes they can tell us they are in pain. Other times the look on their faces or their behavior makes it obvious they are in pain. What we are learning is that pain is much more common among people with dementia than we had realized, and they may not be able to tell us about it due to their confusion or lack of insight. They may call out, moan, or become very agitated, sometimes even striking out at caregivers. Too often in the past, we have assumed this behavior was an inevitable consequence of having dementia, and that nothing could be done to make it better.
There are many challenges in determining pain. People with dementia in the earlier stages may be able to describe the location and intensity of the pain using self-rating scales; however, as dementia progresses to the advanced stage, the person loses the ability to clearly communicate basic needs and complaints. Even if they can verbalize and respond, they may still under-report their pain. Aside from physical pain, they may also be experiencing discomfort from environmental stresses (such as a noisy environment), hunger, constipation or fatigue; or emotional distress resulting from increasing frustration and difficulties in managing everyday activities. There may be pre-existing physical conditions contributing to pain as well, such as arthritis, osteoporosis, low back pain, COPD, etc. The consequences of untreated pain can be quite serious, leading to decreased physical and psychological function, decreased socialization and increased dependence and helplessness - all affecting a person’s quality of life.
Fortunately, there are safe and effective ways to help. The first step is learning about all the ways that people with dementia let us know when they have pain. As a family member or friend, you can play a key role in assisting the facility’s staff in this process by relaying your observations. You are more familiar with your relative’s behavior patterns, their prior pain threshold and reactions to pain, factors that may contribute to discomfort and preferred ways to alleviate pain, e.g., massage, listening to music. You may also be in a better position to notice changes in behavior triggered by pain that are not expressed verbally. Be sure to share this information and concerns with the physician and nursing staff.
There are several pain behavioral observation tools that have been developed to assist nursing home staff. One example is the Pain Assessment in Advanced Dementia, or PAINAD. The PAINAD helps to quantify pain; to make pain ‘visible.’ What makes the PAINAD different is that it identifies behaviors typical of many people with dementia that are often not associated with pain, such as:
In addition, work with staff to note and document the location of pain, the history or onset, duration, pattern, frequency, characteristics (e.g., dull, sharp, aching, tingling), and what makes the pain better or worse. Request that a comprehensive physical be completed, and help staff fill in the person’s history of medical conditions that are painful, such as arthritis or neuropathies, or old injuries. Be alert to the possible effects of pain, including changes in interpersonal interactions, changes in activity or routines (e.g., sleep disturbance, appetite) or increased confusion or mood changes.
It is possible to meet the needs of persons with advanced dementia in a comfortfocused way. Here are some recommendations to help you and the facility’s staff assess and address pain proactively:
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Pain Assessment in Advanced Dementia
Carol O. Long, PhD,
Geriatric and Palliative