When patients have difficulty communicating their level of pain, knowing telltale signs and using pain assessment helps ensure their needs aren’t overlooked.
By John V. Rider, PhD, OTR/L, MSCS, Amanda Godfrey, OTD-S, and Connor Wallace, OTD-S
Over 55 million people worldwide live with dementia, a number which is expected to double in the next 20 years.1 As life expectancy continues to increase, so will the prevalence of more age-related disorders affecting cognition and language, such as dementia. One significant concern among individuals living with dementia is pain. Pain is prevalent, difficult to assess, and has significant consequences for the functional independence and quality of life of individuals with dementia.2 Evidence suggests that more than half of individuals with dementia experience daily pain,3 and around 60% to 80% of residents in nursing homes with dementia regularly experience pain.4,5
While not all patients experiencing pain have persistent or chronic pain, those who do are more likely to have an accelerated decline in memory.6 Evidence also suggests that patients with more severe dementia experience more pain than those with less severe dementia.7 Occupational therapists and rehabilitation clinicians must be aware of how significant pain is among this population and ensure that pain levels are evaluated and addressed across all rehabilitation settings.
Too Often Overlooked
Although healthcare clinicians know pain seriously impacts patients’ function and quality of life, it is often overlooked among individuals with dementia or cognitive impairments in rehabilitation. Studies indicate that pain is inadequately treated in patients with cognitive impairments.2,8 Individuals with dementia (now commonly referred to as major neurocognitive disorders in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5) and cognitive impairments are at risk of untreated pain because their ability to recognize, evaluate, and verbally communicate their pain gradually decreases throughout the course of their disease.9-11 The main explanation for under-treatment and under-detection of pain in individuals with cognitive impairment is that they report pain less often, less spontaneously, and at a lower intensity than those without cognitive impairment.12
The consequences of untreated pain include psychological risks such as depression, sleep disturbances, impaired functional abilities, diminished socialization, further cognitive decline, and increased healthcare and utilization costs.13In general, the more severe the dementia, the less capable the patients are of verbally expressing their pain sensation, which is the most common expression for self-reported pain.5 For these reasons, therapists should use multiple forms of pain assessment to ensure accurate detection of pain, depending on the stage of dementia and the severity of cognitive impairment.
What to Look For
Because pain is always a personal experience, the gold standard of pain assessment is self-report in either standardized or unstandardized forms. However, as cognitive and language abilities decline, an observer tool should be used in addition to self-report assessments. Occupational therapists should also perform routine neuropsychological screening of cognitive status to identify when self-reporting may be unreliable. For example, individuals with significant cognitive or language impairments may be experiencing pain but unable to express it to their healthcare providers or caregivers. Observing and documenting pain behaviors is one way to identify when clients may be experiencing pain and initiate appropriate treatment. Below is a list of behavioral pain indicators that occupational therapists and rehabilitation clinicians should document to ensure proper pain management goals and interventions.
Behavioral Pain Indicators*
- Facial expressions (frowning, grimacing, wrinkling the forehead, rapid blinking, tightly closing eyes, etc)
- Verbalizations or vocalizations (moaning, sighing, groaning, grunting, chanting, calling out, noisy breathing, asking for help, etc)
- Body movements (rigid or tense posture; guarding; fidgeting; pacing; rocking; restricting movement; gait, balance, or mobility changes, etc)
- Changes in interpersonal interactions (aggression, combativeness, resisting care, decreasing social interactions, inappropriate social interactions, disruptive behavior, withdrawing, verbally abusing others, etc)
- Changes in activity patterns or routines (refusing food, appetite changes, increasing rest periods, changing sleep patterns, sudden cessation of everyday routines, increased wandering, etc)
- Mental status changes (crying, increased confusion, irritability, distress, changes in attentiveness, etc)
- Physiological changes (eg heart rate, blood pressure, sweating)
* Adapted from the AGS Panel on Persistent Pain in Older Persons14
It is important to remember that when using behavioral pain indicators, reports of pain should always be taken seriously, even among those with cognitive impairments. Additionally, pain expression in individuals with dementia can take the form of the above behavioral pain indicators as well as less obvious forms, such as subtle behavioral changes. Observations for pain behaviors should be done during functional activities (eg transferring, ambulating, repositioning, dressing, or self-care) and at rest for a comprehensive clinical picture of the pain experience.
Often, rehabilitation clinicians are the only healthcare providers to observe a client during functional activities and may be the first to observe pain behavior indicators during daily activities. Typical behavioral pain indicators may be absent or difficult to interpret in older adults with severe dementia because some forms may result in a mute facial expression or quiet and withdrawn behavior.13 Therapists can collaborate with caregivers, families, and other team members to better understand baseline behaviors among these individuals. It is important to note any subtle changes to routine behavior, as this may indicate pain.
Pain Assessment in the Early Stages of Dementia
In the early stages of dementia, if clients demonstrate the cognitive and communicative abilities to report pain, self-reporting pain—either verbally or visually—may be appropriate. However, clinicians should also watch for pain behaviors as part of their evaluation. To ensure comprehension and accurate documentation of pain, occupational therapists and rehabilitation clinicians should:
- Use simple scales with verbal and visual content
- Repeat questions and instructions
- Provide adequate time for response
- Take an individualized approach based on the client’s specific neuropsychological deficits
- Recognize the role of the environment and try to reduce distractions when assessing pain
Pain Assessment in the Middle and Late Stages of Dementia
In later stages of dementia, self-reported pain may not be obtainable, so observable behavioral pain indicators should be used.2 It is also valuable to obtain a history from family members and caregivers to help recognize altered behavior. Three behavioral domains have been widely accepted as mirroring pain-related states in observer rating scales.2
- Facial responses (frowning, grimacing, closing eyes, etc)
- Vocalizations (eg excessively loud or repetitive verbal utterances)
- Body movement or body posture (constantly trying to reposition or move when lying down or seated, holding a specific body part, constantly rubbing a specific area, etc)
Initiation of any of these behaviors may indicate pain. Clinicians should pay attention to what provokes the response (movement, sitting versus lying, trying to swallow, a specific activity, etc).
Experimental methods have also been utilized in research but have yet to be readily used in clinical practice. For example, brain imaging, neurophysiologic recordings, facial response coding with video recording, and actigraphy monitoring have all been shown to be effective in clinical studies but have yet to reach a level of mainstream application. We may see increased use of these types of technology in the future as they become more accessible in rehabilitation settings.
Several standardized pain assessments are also designed for individuals with impaired cognition or dementia. Many of these assessments can be found online and used for free. The available assessments generally utilize the behavioral pain indicators mentioned above. Some use a combination of both self-report and observational methods.
Free Pain Assessments for Individuals with Impaired Cognition or Dementia
- Pain Assessment in Advanced Dementia Scale (PAINAD)
- Measures breathing, negative vocalization, facial expression, body language, and consolability.
- Mobilization-Observation-Behavior-Intensity-Dementia-2 (MOBID-2)
- Measures pain noises, facial expression, and defense (freezing, guarding, pushing, etc.).
- Discomfort Scale for Dementia of the Alzheimer’s Type (DS-DAT)
- Measures noisy breathing, negative vocalizations, lack of content of facial expression, sad facial expression, frown, lack of relaxed body language, tense body language, and fidgeting.
- Disability Distress Assessment Tool (Dis DAT)
- Measures facial appearance, jaw movement, eye appearance, skin appearance, vocal sounds, speech, habits & mannerisms, body posture, and body observations.
- DOLOPLUS-2 Scale
- Measures somatic complaints, protective body postures adopted at rest, protection of sore areas, expression, sleep pattern, washing and or dressing, mobility, communication, social life, and problems of behavior.
- Critical Care Pain Observation Tool (CPOT)
- Measures facial expressions and body movements. For intubated patients, measures compliance with ventilator. For extubated patients, measures vocalizations, and muscle tension.
- Checklist of Nonverbal Pain Indicators (CNPI)
- Measures verbal vocal complaints, facial grimaces, bracing (on furniture, equipment, or area of pain), restlessness, rubbing, and nonverbal vocal complaints.
- Behavioral Pain Scale (BPS)
- Measures facial expression, upper limb movements, and compliance with mechanical ventilation.
- Abbey Pain Scale
- Measures vocalization, facial expression, body language, behavior, and physiological and physical changes.
Overall, there is not one assessment that is considered best for individuals experiencing a neurocognitive disorder. Instead, the selection of standardized assessments should be based on the patient’s personal needs using clinical reasoning skills.
Individuals with dementia and limited communication abilities experience high rates of pain, and, unfortunately, pain management is often overlooked among this population. Rehabilitation clinicians have an opportunity to advocate for these individuals and ensure their pain is recognized and appropriately addressed.
Current evidence suggests that a combination of self-report and observational pain assessments should be used with individuals who have dementia and cognitive impairments. Occupational therapists and rehabilitation clinicians should use neuropsychological screening and functional cognitive abilities to guide the selection of client-centered pain assessments. Observational pain assessment should be conducted during rest and activity to ensure a comprehensive picture of the individual’s pain experience. It’s also important to include caregivers and family members in the pain assessment process and educate them on behavioral pain indicators in the early stages of dementia to maximize patients’ quality of life. Caregivers and family members should also be interviewed when obtaining a patient history to help identify subtle behavior changes. To truly benefit patients over the long term, pain assessment methods and results should be clearly documented in the medical record to ensure continuity of care across disciplines.
John V. Rider, PhD, OTR/L, MSCS, CEAS, is an occupational therapist and associate professor at Touro University Nevada. He currently works as a community-based therapist and in a neurological outpatient clinic. He has completed numerous research projects and presentations on evidence-based strategies for managing pain and chronic conditions.
Amanda Godfrey, OTD-S, and Connor Wallace, OTD-S, are third-year students in the entry-level occupational therapy doctorate program at Touro University Nevada and expected to graduate in June of 2023. Both recently presented at the American Occupational Therapy Association Annual Conference with Dr Rider on evaluating pain among individuals with cognitive impairments.
- World Health Organization Dementia Fact Sheet. Available at https://www.who.int/news-room/fact-sheets/detail/dementia. Accessed August 2, 2022.
- Achterberg W, Lautenbacher S, Husebo B, Erdal A, Herr K. Pain in dementia. Pain Rep. 2019;5(1):e803.
- Barry HE, Parsons C, Passmore AP, Hughes CM. Exploring the prevalence of and factors associated with pain: a cross-sectional study of community-dwelling people with dementia. Health Soc Care Community. 2016;24(3):270-282.
- Corbett A, Husebo B, Malcangio M, et al. Assessment and treatment of pain in people with dementia. Nat Rev Neurol. 2012;8(5):264-274.
- Williams CS, Zimmerman S, Sloane PD, Reed PS. Characteristics associated with pain in long-term care residents with dementia. The Gerontologist. 2005;45(suppl_1):68-73.
- Rajkumar AP, Ballard C, Fossey J, et al. Epidemiology of pain in people with dementia living in care homes: Longitudinal course, prevalence, and treatment implications. J Am Med Dir Assoc. 2017;18(5):453.e1-453.e6.
- van Kooten J, Smalbrugge M, van der Wouden JC, Stek ML, Hertogh CMPM. Evaluation of a pain assessment procedure in long-term care residents with pain and dementia. J Pain Symptom Manage. 2017;54(5):727-731.
- Lukas A, Schuler M, Fischer TW, et al. Pain and dementia: A diagnostic challenge. Z Gerontol Geriatr. 2012;45(1):45-49.
- International Association for the Study of Pain (IASP) Pain Assessment in Dementia Fact Sheet. Available at iasp-pain.org/resources/fact-sheets/pain-assessment-in-dementia/. Accessed August 1, 2022.
- Gibson SJ, Lautenbacher S: Pain Perception and Report in Persons with Dementia. In: Lautenbacher S, Gibson SJ (eds): Pain in Dementia. Wolters Kluwer and IASP Press, 2017. pp 43-54.
- Hadjistavropoulos T, Herr K, Prkachin KM, et al. Pain assessment in elderly adults with dementia. Lancet Neurol. 2014;13(12):1216-1227.
- Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP. Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools. BMC Geriatr. 2006;6:3.
- Herr K, Bjoro K, Decker S. Tools for assessment of pain in nonverbal older adults with dementia: a state-of-the-science review. J Pain Symptom Manage. 2006;31(2):170-192.
- AGS Panel on Persistent Pain in Older Persons. The management of persistent pain in older persons. J Am Geriatr Soc. 2002;50(6 Suppl):S205-S224.