Care Advocate Newsletter  

Past Issues | Download PDF   November/December 2012

For the Person with Dementia, What Does Pain Look Like?

Pain affects each of us differently. Some people can walk around all
day with pain and we would never know. For others, facial expressions
or the way they hold themselves may clearly show they are very
uncomfortable, and probably in pain.

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:

  • Breathing: Periods of hyperventilation, noisy, labored breathing, rhythmic waxing and waning of breathing
  • Negative vocalization: Crying, loud moaning or groaning, wails or laments, repeated troubled calling out loud, low-level speech, muttering
  • Facial expression: Sad, frowning, anxious or alarmed, very distressed look on face, may squeeze eyes shut
  • Body language: The person holds himself rigidly, or pulls or pushes, hits, kicks or grabs others, appears tense, paces in a distressed manner, or fidgets.
  • Consolability: The person is visibly upset and cannot be soothed or comforted, acts distracted

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:

  1. Don’t assume that the person with dementia cannot explain or rate his or her pain. Always ask them directly if they have pain. Also, using another word besides pain, such as “Do you hurt?” or ‘Is it sore here?” may elicit a better response. However, when they can no longer verbally express their pain but they demonstrate obvious distress, explore further the cause and manifestation of their pain. Always rule out other forms of discomfort, from soiled briefs or awkward positioning to acute medical conditions.
  2. When a person can no longer self-report their pain, provide your insights to the interdisciplinary team and assist them where possible in applying a pain assessment tool such as the PAINAD.
  3. Confer with doctors and nurses on a treatment/care plan which could include pain medication and non-drug strategies, such as massage, hot or cold packs and repositioning. Remember that PRN (given when needed) orders are not useful for people with dementia, because they cannot usually tell you when they are in pain.
  4. Monitor the results of the treatment/care plan. Keep a careful eye on any behavioral changes and establish strong communication channels with all staff members to help determine if the plan is providing overall comfort and pain control and if the behaviors and self-report suggest that relief is being obtained. Work with the staff to determine whether there are specific times the medication is helpful, whether it should be provided 24-hours a day, and if needed indefinitely, how well it is continuing to work over time. Finally, encourage the staff to document their efforts and outcomes and help them make pain the Fifth Vital Sign, with aggressive assessment and care.
We wish to acknowledge Forest Laboratories, Inc. for making this newsletter possible.
Visit the Care Advocate Homepage for past issues.  
Resources & Events

Pain Assessment in Advanced Dementia
For more information about Pain Assessment in Advanced Dementia (PAINAD) go to: Content/Assessment/Impaired/

Carol O. Long, PhD, RN, FPCN Geriatric and Palliative Care Consultant
Co-Director, Palliative Care for Advanced Dementia, Beatitudes Campus