Although challenging behavioral symptoms in people with dementia can be associated with the dementia itself, the picture is usually more complicated. Understanding factors that predict different types of challenging behaviors is of primary importance because it guides which strategies should be chosen to address the underlying causes with the goal of preventing and managing the symptoms (Cho et al., 2021).
Physical causes of challenging behaviors can be attributed to personal factors (medical conditions, pain, premorbid personality, and unmet needs), social factors (communication with caregivers, caregivers’ stress and depression, and lack of social activities), and environmental factors (overstimulation, lack of established routines) (Cho et al., 2021).
9.1 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, more than a third had an undetected illness that was associated with behavioral and psychological symptoms, including agitation, repeated questioning, crying out, delusions, and hallucinations (Kales et al., 2015).
9.2 Pain in Older Adults with Dementia
Pain is a common, underrecognized, underreported, undertreated, and often disabling condition in people with dementia. Pain affects a person’s quality of life and is associated with physical disability and neuropsychiatric symptoms such as agitation and aggression. Pain also increases stress for family caregivers who are themselves at risk for adverse mental and physical health outcomes (Porter et al., 2022).
Nearly two-thirds of people with dementia report bothersome pain. This is not surprising, considering the prevalence of musculoskeletal disorders, neuropathy, medical conditions, uncomfortable beds and chairs, lack of appropriate exercise, and inactivity. Pain is one of the most cited reasons for a decrease in quality of life in people with dementia.
There are many reasons for under-recognition of pain. For a person with dementia, it may be difficult to accurately report symptoms, pain may be more intense some days than others, and a person may fear being judged or disbelieved. Many people accept pain as a normal part of aging and fear that if their pain is treated with narcotics, they may become addicted. Additionally, a person may not be in pain during the doctor visit or may not feel pain when they are sitting quietly (Resnick et al., 2019).
For providers and caregivers, under-recognition and under-treatment of pain in a person with dementia can be associated a lack of knowledge about how to evaluate pain in older adults, communication difficulties, or the assumption that pain is a normal part of aging (Resnick et al., 2019).
An effective approach to assessing pain in older adults with dementia is to assume that they do have pain, especially if they have conditions or medical procedures that are typically associated with pain (Horgas, 2018). Key points about pain in people with dementia:
- Pain is not a normal part of aging.
- People with dementia feel pain.
- Pain may be difficult to assess.
- Pain is often caused by other medical conditions.
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, heat, 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 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, i.e., 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 urology specialist. The urologist put the daughters on the right track and fortunately they were able to use their own medical knowledge, common sense, 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.
9.3 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 self-report of pain is typically viewed as the gold standard in pain assessment. In dementia, however, self-reports are affected by a person’s ability to communicate about their pain. A person with dementia may also be unable to comprehend and use pain scales to indicate their pain level of pain.
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 a patient self-reports. Pain reports from a family caregiver is sometimes referred to as the “silver standard.”
Both physiologic and behavioral responses can indicate the presence of pain. Physiologic responses include tachycardia, increased respiratory rate, and hypertension. Behavioral responses include splinting, grimacing, moaning, grunting, distorted posture, and a reluctance to move. A lack of physiologic responses or an absence of behaviors indicating pain does not mean there is an absence of pain.
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 “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 was so disoriented and sleepy for the next 48 hours that we thought she was dying. Her pain was unaffected.
9.3.1 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.
9.3.2 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. A high score may not represent more pain than a low score. In other words, a patient who scores 10 out of 60 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.
9.3.3 Advanced Dementia Scale (PAINAD)
The Pain Assessment in Advanced Dementia (PAINAD) scale assesses breathing, negative vocalizations, facial expression, body language, and ability to be consoled. However, interpreting the behaviors in PAINAD is complex; there is considerable overlap between behavioral symptoms of dementia and behavioral symptoms of pain, which often causes generalized distress. A positive score on PAINAD might be blamed on pain when there is some other cause of distress, including boredom, hunger, or fear. This highlights the challenge of identifying pain in people with dementia and raises concerns about the validity of PAINAD (Dunford et al., 2022).
Pain Assessment in Advanced Dementia (PAINAD) |
||||
|---|---|---|---|---|
|
0 |
1 |
2 |
Score* |
Breathing |
Normal |
|
|
|
Negative vocalization |
None |
|
|
|
Facial expression |
Smiling or inexpressive |
|
Facial grimacing |
|
Body language |
Relaxed |
|
|
|
Consolability |
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 |
Total: |
|||