Team Sleuthing and Other Strategies for Problematic Pain in Cognitively Impaired Individuals

      Graphical abstract

      Pain is a common and serious problem in the older population. Managing pain often is challenging, but it takes on an additional degree of difficulty when the person is cognitively impaired or has dementia. At the beginning of a session on Pain Management in the Cognitively Impaired at the 2019 Annual Conference of AMDA — The Society for Post-Acute and Long-Term Care Medicine, speaker Anthony Burgess, MD, MHA, asked how many audience members were confident about treating pain. Several hands went up. When he asked how many had that same confidence treating pain in patients with cognitive impairment or dementia, only a few people indicated that they did.
      “It can be challenging,” Dr. Burgess admitted. “It’s great if these patients can talk to me, and I can have conversations with them about pain. But if I can’t talk with patients, I have to depend more on visuals regarding physical movements, facial expressions, and social changes, as well as insights from other sources.”

      First, Some Facts

      Why is this such an urgent issue? The numbers are startling. As Dr. Burgess noted, up to 83% of people over age 60 experience pain of some kind, and 75% of those over 65 have persistent pain. Over half of people with Alzheimer’s disease have pain, and up to 50% of older people with dementia experience persistent pain. Yet problems with pain are often missed, and pain is undertreated in about 21% of nursing home residents.

      Targeting Troubles With or Without Talk

      When it’s possible to communicate with the patient to some degree, assessments such as SOCRATES can help. This is an acronym used to gain insight into the patient’s feelings:
      • Site: Where is the pain? Or the maximal site of the pain?
      • Onset: When did the pain start, and was it sudden or gradual? (Include whether it is progressive or regressive.)
      • Character: What is the pain like? An ache? Stabbing?
      • Radiation: Does the pain radiate anywhere?
      • Associations: Are any other signs or symptoms associated with the pain?
      • Time course: Does the pain follow any pattern?
      • Exacerbating/relieving factors: Does anything change the pain?
      • Severity: How bad is the pain?

      Playing Detective

      When the patient is cognitively impaired, Dr. Burgess suggested, clinicians have to do a bit of detective work. They can look at the patient’s history for previous or ongoing problems or issues that might be causing pain, and they can ask family members and/or caregivers for any thoughts or insights.
      Observing the patient, however, can be the most telling. For instance, some facial expressions may indicate pain. These include frowning, grimacing, wrinkled forehead, closed or tightened eyes, a distorted expression, rapid blinking, furrowed brow, tightened lips, or clenched teeth/jaw.
      Body language and physical indicators also can be very illuminating. The signs of pain include a rigid body posture; fidgeting; increased pacing; mobility/gait changes; limping; rubbing body parts; clutching or holding bedding, pillows, or other items; or constant shifting or repositioning.
      Even though people with cognitive impairment may not be able to tell you about their pain in words, they can still “vocalize” messages about their discomfort. Listen, Dr. Burgess said, for sighing, moaning, groaning, howling, screaming, grunting, chanting, calling out, noisy breathing, asking for help, crying, and gasping.

      Scales: Tried and True

      There are some validated scales that can help assess pain in older patients. The Verbal Numeric Scale (1–10) and the Verbal Descriptor Scale (words describing severity of pain) also are useful to help assess pain in patients who can still converse and answer questions. For those individuals who can no longer communicate verbally, the Visual Analog Scale and FACES Pain Rating Scale can help assess pain.
      The Abbey Pain Scale, Dr. Burgess noted, is specially designed to help assess pain in people who cannot verbally articulate their feelings. This tool enables the user to assess the patient based on observations related to vocalizations, facial expressions, changes in body language, behavioral changes, physiological changes, and physical changes. It is designed to be used as a movement-based assessment. So the patient should be observed when he or she is being moved, during pressure area care, while showering, while eating, and during other care activities. Then a second evaluation should be conducted one hour after any intervention is undertaken.
      Other scales that can be used with cognitively impaired patients include the Pain Assessment in Advanced Dementia (PAINAD) and the Pain Assessment Checklist for Seniors with Limited Ability to Communicate Revised (PACSLAC-II).

      If We Don’t Diagnose…

      The consequences of missing or ignoring signs of pain in cognitively impaired patients are significant, Dr. Burgess said, and they include:
      • Poor appetite and/or weight loss
      • Disturbed sleep
      • Fatigue
      • Withdrawal from talking or social activities
      • Detachment from relationships with family or friends
      • Anger
      • Sadness, anxiety, or depression
      • Physical and verbal aggression
      • Resisting care
      • Wandering
      • Loss of self-esteem
      • Skin breakdown, ulcers
      • Incontinence
      • Increased risk for use of chemical and physical restraints
      Untreated pain also may cause patients to have decreased ability to perform activities of daily living, less ability to function, and more difficulty walking or transferring. They also may experience impaired immune function, hormonal imbalance, and increased fall risk. As a result of any combination of these, they may become bedbound.
      There are also consequences for the facility, staff, and practitioners, Dr. Burgess noted. These include survey tags, citations, and penalties, negligence/malpractice lawsuits, readmissions, negative press, and loss of referrals and reputation.

      Team Tags In

      “Pain management requires an ongoing team approach, and it must include measurable goals for pain control,” said Dr. Burgess. It’s an “all-hands-on-deck situation,” he suggested, that requires ongoing assessments by everyone. At the same time, he said, “We need to make sure that we set realistic expectations for pain and that we get everyone on the same page. The goal is to reduce pain to a functional level.”
      Any approach to pain management must include nonpharmacologic as well as pharmacologic interventions, and it must consider the patient’s preferences and effectivity. While each player on the care team has a specific role, Dr. Burgess suggested that everyone can show they care, listen, and empathize. They also can talk to the patient, even if he or she doesn’t understand, and — as possible — educate the patient and family about pain goals and treatment. They can set realistic comfort-function goals for the pain.
      All team members can be “cheerleaders” for patients, encouraging them to pursue physical therapy or other interventions and helping them understand the importance of reporting pain. Not only should the team members communicate with the patient and family, they also should communicate with each other, Dr. Burgess said.
      Working with the team, the medical director can help set quality measures and conduct root cause analyses. The physician leader, said Dr. Burgess, also can play a role in education, training, and team coaching, and he or she can implement the use of clinical practice guidelines and other tools and resources. Dr. Burgess also suggested creating an Opioid Stewardship Program with specific protocols designed to promote responsible and appropriate use of these medications.

      From Massage to Pets: Drug-Free Pain Relief

      In addition to or instead of medications, there are many nonpharmacologic interventions the team can use to help manage pain in cognitively impaired individuals. These include massage, aromatherapy, music programs, humor, environmental changes (soft blankets, quiet, ambient temperatures), and pet therapy. However, these need to be customized by working with family members and caregivers who know the patient’s preferences and background. Something like pet therapy that can bring tremendous joy to one person may be boring or even upsetting to someone else.
      AMDA – The Society for Post-Acute and Long-Term Care Medicine has recently updated its position on the use of marijuana in nursing homes. The Society supports patient-centered decision making, including the use of marijuana when it has substantial clinical benefits that justify the risks, but it cautions against the widespread use of marijuana in the long-term care setting. The updated position statement is available online at

      Medication Management

      Of course, pharmacologic interventions don’t have to mean opioids. Nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, topicals, steroids, and cannabinoids all may be used with varying levels of efficacy. Other treatments may include muscle relaxants, anticonvulsants, antidepressants, and nonopioids. Again, these must be customized to each person’s pain, comorbid conditions, and other issues. This comes back to the value of the initial assessment and the need to assess patients continually over time.
      Pain management, particularly in patients with cognitive impairment, is a journey, with many stops and many different players. Bring your team together, Dr. Burgess suggested, and uncover all the information you need to effectively manage pain in people who often can’t speak for themselves.
      Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.