Understanding pain and other acute medical symptoms in people with dementia is a significant challenge. The prevalence of pain in people with dementia is high; there is good agreement in both large and small studies that about 50% of the people with dementia regularly experience pain. This is not surprising, considering that advanced age is an important risk factor for developing pain (van Kooten et al., 2015).
For this elderly population, pain represents a significant problem due to the high prevalence of musculoskeletal disorders, cancer, neuropathy, and other medical conditions for which pain is a major symptom (Schneider et al., 2020). Pain can be associated with arthritis, chronic neurologic conditions, and skin breakdown. Inactivity, uncomfortable beds and chairs, and lack of exercise contribute to discomfort and pain from these conditions.
Failing to address pain in people with dementia can lead to declines in cognitive functioning, as well as declines in the performance of activities of daily living; pain is one of the most cited reasons for a decrease in quality of life in dementia. Therefore, recognition and adequate treatment of pain in people with dementia should have high priority (van Kooten et al., 2015).
Key points about pain in people with dementia:
- People with dementia feel pain.
- Pain is not a normal part of aging.
- Pain may be difficult to assess.
- Pain is often caused by other medical conditions.
- Clients may be unable to tell you they are in pain or accurately describe the pain.
- Pain perception in a person with dementia may be increased compared to a person with dementia. (Volicer & van der Steen, 2014)
Acute Medical Causes of Behavioral Symptoms
People with dementia may be disproportionately affected by undiagnosed illnesses compared with those without cognitive impairment. In a study of community dwelling older adults with dementia, 36% had undetected illness that was associated with behavioral and psychological symptoms, including agitation, repeated questioning, crying out, delusions, and hallucinations (Kales et al., 2015).
Regular assessment should address uncomfortable physical symptoms, including pain, constipation, and urinary retention. Because pain is present in 46 to 56% of patients with dementia and the presence of pain is associated with increased behavioral and psychological symptoms, the past medical history should have a review for painful conditions (e.g., neuropathy, osteoarthritis, peripheral vascular disease), and caregivers should be asked about both the patient’s self-report about pain and nonverbal signs of pain, because patients with dementia may demonstrate nonverbal signs of pain even though they do not report it (Cloak and Khalili, 2020).
The Pain Assessment in Advanced Dementia (PAINAD) scale or Face, Legs, Activity, Cry, Consolability scale (commonly used to assess pain in infants and children who are unable to self-report) are both reliable and valid tools for objectively evaluating and tracking pain. Most hospitals and some nursing homes use one of these instruments, and family caregivers can also be trained to use them (Cloak and Khalili, 2020).
Assessing Pain in Older Adults with Dementia
Undiagnosed and untreated pain is unacceptably high, with reported prevalence up to 32% in home-dwelling people with dementia and about 60% in nursing home patients with and without dementia (Husebo et al., 2016). The assessment of pain is fundamental to improve quality of life and reduce the risk of death in people with demented (Scuteri et al., 2020).
During a pain assessment, it is important to keep in mind that pain can appear in different forms (e.g., nociceptive pain, neuropathic pain, and central pain). Importantly, the occurrence of pain in dementia can lead to further complications in the patients’ healthcare routine. At this moment, due to the COVID-19 emergency, many older adults with dementia and pain cannot travel to a hospital or clinic to receive their usual pain management routine (Scuteri et al., 2020).
Both physiologic and behavioral responses can indicate the presence of pain. Physiologic responses can include tachycardia, increased respiratory rate, and hypertension. Behavioral responses include splinting, grimacing, moaning or grunting, distorted posture, and reluctance to move. Underdiagnosed pain may induce behavioral and psychological symptoms like agitation, requiring the use of medications that can increase cerebrovascular accidents (Scuteri et al., 2020).
Healthcare providers may feel uncertain about assessing pain in clients with dementia. As verbal communication declines, pain detection and assessment become more difficult. Self-report is no longer a reliable means of reporting pain. Observable behaviors gain more and more importance as indicators of pain, namely facial responses, body movement/posture, and vocalization (Lautenbacher et al., 2018). Unfortunately, more than half of clients who were dying with advanced dementia experienced pain in the last week of life that was not satisfactorily managed (Volicer & van der Steen, 2014).
Jenna Wakes Up Screaming in Pain
Introduction: Pain can be difficult to assess in older adults with dementia. Depending on the level of dementia, a client may be unable to communicate effectively and may not remember an episode of pain a short time later. Caregivers and healthcare providers must learn to identify, assess, and address the causes of pain in this vulnerable population.
Client Information: Jenna, a retired nurse now in her mid-90s, has moderate to severe dementia. She lives at home with 24-hour care from her two daughters and a daytime caregiver. Although Jenna has chronic back pain, she rarely complains about pain and her daughters successfully manage her back pain with Tylenol, ice, exercise, and positioning. Jenna keeps as active as she can, walks with assistance, and exercises every day on the floor or in her recliner. Her bedroom is fitted with transfer poles and grab bars and Jenna is still able to get to the bathroom independently during the night.
Timeline: Recently, in the middle of the night, Jenna’s daughter found her mother sitting on the toilet, moaning in pain and grabbing between her legs. “It hurts, it hurts” she screamed, doubled over in pain. Her daughter thought Jenna might be impacted but her mother shouted “No, it hurts here” pointing between her legs, “not back there! Get me a cup of hot water.” She punched her daughter several times in the stomach for emphasis. Jenna proceeded to pour 15 cups of warm water between her legs, at which time the pain subsided, and she went back to bed. The next day, although Jenna had no recollection of the night before, her daughter took her for an abdominal ultrasound, a blood test, and a urine test. All came back negative.
A week later, the same thing happened again. Jenna was up every 20 minutes to the bathroom to urinate, culminating in an episode of screaming, writhing pain at 3:30 in the morning. Her daughter found a significant amount of very hard stool at the end of her mother’s rectum and was able to evacuate the stool. The pain subsided. After a discussion with Jenna’s primary doctor, the daughters established a bowel program. The doctor ordered a strong laxative to be used as needed in addition to a stool softener. This helped Jenna’s constipation but did nothing for her episodes of severe nighttime pain. The daughters were desperate. Jenna wasn’t a complainer, so her daughters knew the pain was real.
At one point the pain was so severe that her daughter took Jenna to the ER at 2 a.m. Jenna fought and kicked so hard that it took three nurses to hold her down for a urine sample. The doctor did a cursory examination, said Jenna was agitated due to her dementia, and prescribed an antipsychotic. Jenna’s daughter recalled that antipsychotics are not recommended in older adults with dementia but nevertheless decided to see if the antipsychotic helped. The antipsychotic put Jenna to sleep for almost 48 hours. The nighttime pain was unaffected.
Intervention: The daughters asked the primary care physician for a referral to a urologist, who recommended Jenna stop drinking coffee and orange juice, and prescribed a topical hormone cream. This helped a little, but Jenna continued to experience fairly severe nighttime pain.
After some research, one of the daughters (an RN) came across an article on interstitial cystitis (related to bladder spasms), which fit the symptoms almost perfectly. The daughters decided to try the recommendations in the article, ie, avoiding acidic food, excessive vibration, and additives in soaps and detergents that can trigger bladder pain. They continued to restrict caffeine, tomatoes, and orange juice, bought hypoallergenic soap and laundry detergent, got a wheelchair with pneumatic tires and a good-quality seat cushion, and continued to use the hormone cream. The pain stopped almost immediately and did not return. Nevertheless, when they returned to the ER a couple of months later because of a UTI, the same doctor again prescribed antipsychotics.
Discussion: Jenna’s case is complex due to her age, the intermittent and severe nature of her pain, and her inability to describe her symptoms except by screaming and moaning. Her primary care physician was unable to offer the slightest bit of direction except, when asked, to refer Jenna to a specialist. The urologist put the daughters on the right track and fortunately they were able to use their own medical knowledge and experience to eventually figure out what was causing Jenna’s pain. Jenna has not experienced another episode of nighttime pain.
Client Perspective: When asked, Jenna always reports that she slept well—even when she had a severe bout of nighttime pain. She occasionally remembers the nighttime pain but doesn’t remember hitting her daughter or demanding hot water. Even after a difficult night, she usually awakes with a smile on her face and a kiss for her daughters.
Common Measurement Tools for Assessing Pain
The most critical aspect of pain assessment is that it be done on a regular basis using a standard format. Pain should be re-assessed after each intervention to determine whether the intervention was effective. The time frame for re-assessment should be directed by the needs of the client and the center’s policies and procedures.
People experiencing cognitive impairment or dementia tend to voice fewer pain complaints but may become agitated or manifest unusual or sudden changes in behavior when they are in pain. Caregivers may have difficulty knowing when these people are in pain and when they are experiencing pain relief. This makes older adults with dementia vulnerable to both under-treatment and over-treatment.
The self-report of pain is typically viewed as the gold standard in pain assessment. In dementia, however, self-reports are limited by cognitive decline, which impairs the clients’ ability to communicate about their pain. Dementia also causes a reduction in abstraction abilities, which reduces the clients’ ability to comprehend and thereby use pain scales to indicate their pain (Oosterman et al., 2016). Family caregivers can be used as proxies although it is important to note that family members typically, as a group, report higher levels of pain than patient self-reports.
In the absence of accurate self-report, observational tools must be used in both research and practice, based on the interpretation of behavioral cues to assess the presence of pain. This approach has resulted in a proliferation of pain assessment instruments developed to identify behavioral indicators of pain in people with dementia and other cognitive impairment (Lichtner et al., 2014).
My Mom Is Blind, Not Deaf—and She Is in Pain
I brought my mom to the ER because of severe pain, increased confusion, and weakness. A young male doctor came into her room, identified himself, and shouted in an overly loud voice “Hello, I’m your doctor. Do you have any new or worsening pain?” My mom turned towards him and smiled but didn’t answer. The doctor shouted again in an even louder voice “Do you have any pain? Are you in pain?” My mother smiled but didn’t answer. I leaned over and asked her in a normal voice if she was in pain and she said no, meaning she was not in pain at that moment. I told the doctor that my mom is blind but hears very well. He didn’t look at me or ask me any questions. He shrugged and left the room.
The doctor returned a few minutes later with a diagnosis of agitation related to dementia and prescribed an antipsychotic. Although a very low dose was prescribed, my mom had a very bad reaction. After we returned home, she remained disoriented and very sleepy for the next 48 hours. Her pain was unaffected.
The most structured observational tools are based on guidance published by the American Geriatrics Society, which describe six domains for pain assessment in older adults:
- Facial expression
- Negative vocalization
- Body language
- Changes in activity patterns
- Changes in interpersonal interactions
- Mental status changes (Lichtner et al., 2014)
In people with dementia, these behaviors can overlap with other common behavioral symptoms or cognitive deficits such as boredom, hunger, discomfort, anxiety, depression, or disorientation. This increases the complexity of accurately identifying the presence of pain in patients with dementia and raises questions about the validity of existing instruments (Lichtner et al., 2014).
In a systematic review of reliability, validity, feasibility, and clinical utility of 28 pain assessment tools used with older adults with dementia, no one tool appeared to be more reliable and valid than the others (Lichtner et al., 2014). Because patient self-report often cannot be used in non-verbal older adults, the next best option is to question the person who is most familiar with the patient in everyday life; this is sometimes referred to as a “silver standard” (Lichtner et al., 2014).
Keeping these challenges in mind, three commonly used behavioral assessment tools can be used in assessing pain and evaluating interventions in cognitively impaired adults.
Behavioral Pain Scale
The Behavioral Pain Scale (BPS) was developed for use with critically ill patients in the ICU. It evaluates and scores three categories of behavior on a 1 to 4 scale:
- Facial expression: 1 for relaxed to 4 for grimacing
- Upper-limb movement: 1 for no movement to 4 for permanently retracted
- Ventilator compliance: 1 for tolerating ventilator to 4 for unable to control ventilation
A cumulative score above 3 may indicate pain is present; the score can be used to evaluate intervention, but cannot be interpreted to mean pain intensity. The patient must be able to respond in all categories of behavior—for example, the BPS should not be used in a patient who is receiving a neuromuscular blocking agent.
Pain Assessment Checklist
Pain behavior checklists differ from pain behavior scales in that they do not evaluate the degree of an observed behavior and do not require a patient to demonstrate all of the behaviors specified, although the patient must be responsive enough to demonstrate some of the behaviors. These checklists are useful in identifying a patient’s “pain signature”—the pain behaviors unique to that individual. The Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) is a caregiver-administered tool that evaluates sixty behaviors divided into four subscales:
- Facial expressions (13 items)
- Activity/body movements (20 items)
- Social/personality/mood (12 items)
- Physiological indicators/eating and sleeping changes/vocal behaviors (15 items)
A checkmark is made next to any behavior the patient exhibits. The total number of behaviors may be scored but cannot be equated with a pain intensity score. It is unknown if a high score represents more pain than a low score. In other words, a patient who scores 10 out of 60 behaviors does not necessarily have less pain than a patient who scores 20. However, in an individual patient, a change in the total pain score may suggest more or less pain.
Advanced Dementia Scale (PAINAD)
Several observational scales for measuring pain in non-communicative patients have been developed. One commonly used scale is the Pain Assessment in Advanced Dementia (PAINAD). It is able to distinguish effect of analgesics and difference between various severities of pain (Volicer & van der Steen, 2014). This tool was developed by a team of clinicians at the E.N. Rogers Memorial VA Hospital in Bedford, Massachusetts and involves the assessment of breathing, negative vocalization, facial expression, body language, and consolability.
Pain Assessment in Advanced Dementia (PAINAD)
Smiling or inexpressive
No need to console
Distracted or reassured by voice or touch
Unable to console,
distract, or reassure
PAINAD Scoring: 1-3 = Mild; 4-6 = Moderate; 7-10 = Severe