How to Assess Pain in Dementia Patients: A Guide for Caregivers and Clinicians

Up to 80% of individuals with advanced dementia experience pain, yet their inability to communicate verbally makes it difficult to recognize.

This guide explains how to assess pain in dementia patients by observing behavioral changes and using proven observational tools, ensuring their comfort is prioritized and addressing a significant care challenge.

Quick Summary

Observing nonverbal cues like facial expressions, body language, and changes in behavior is key to assessing pain in dementia patients. Specialized scales like PAINAD and the Abbey Pain Scale provide a structured, reliable method for caregivers and clinicians to identify and track discomfort accurately, leading to better management and improved quality of life.

Key Points

• Look for Nonverbal Cues: Observe facial expressions like grimacing, body language such as guarding or restlessness, and listen for vocalizations like moaning or sighing.

• Monitor Behavioral Changes: Changes in appetite, sleep patterns, or increased agitation or withdrawal can all be signs of underlying pain in a dementia patient.

• Utilize Observational Tools: Standardized scales like the PAINAD or Abbey Pain Scale provide a reliable and consistent way to score and track pain severity over time.

• Include Caregiver Input: Family caregivers who know the person's baseline behavior can offer crucial insights into subtle changes that might indicate pain.

• Consider an Analgesic Trial: Under medical supervision, a trial of pain medication can help confirm if certain behaviors are related to pain by observing if the behaviors subside.

• Address Underlying Causes: Always consider common sources of pain in seniors, such as UTIs, constipation, or arthritis, when a change in behavior is noted.

The Challenges of Pain Assessment in Dementia

For individuals living with dementia, the progressive decline in cognitive abilities often includes the loss of language and memory, complicating the ability to articulate pain. This creates a significant challenge for family caregivers and professional healthcare providers. Traditional pain scales, which rely on self-reporting and numerical ratings (e.g., a 0–10 scale), become unreliable or unusable. As a result, pain is frequently underdiagnosed and undertreated in this population, leading to unnecessary suffering, increased agitation, and a reduced quality of life. The key to effective pain management is shifting the assessment focus from verbal reports to observant, nonverbal cues and utilizing validated, objective assessment tools.

Recognizing Nonverbal Indicators of Pain

When a person with dementia cannot express their pain, their body and behavior become their voice. Careful and consistent observation is paramount. Signs of pain can be subtle and may be mistaken for typical dementia behaviors or age-related issues. Learning to distinguish these cues is the first step in effective assessment.

Facial Expressions

• Grimacing or frowning: A tightening of the facial muscles, often accompanied by furrowed brows.
• Wrinkled forehead: A common sign of discomfort or distress.
• Tightened eyelids or closed eyes: Squinting or keeping eyes closed tightly in response to movement or touch.
• Wincing: A momentary tightening of the face, particularly when moved or touched.
• Distorted expression: A look of fear, sadness, or anxiety that is not typical for the individual.

Body Language and Movement

• Guarding or bracing: Protecting a particular body part, such as holding a hand over a sore joint.
• Restlessness or agitation: Pacing, fidgeting, or an inability to sit still comfortably.
• Changes in gait or mobility: Limping, shuffling, or being reluctant to move or bear weight.
• Clenching fists or grinding teeth: Involuntary tension that can indicate physical discomfort.
• Muscle tension: A rigid or tense posture, which may be more noticeable during transfers or repositioning.

Vocalizations

• Groaning, moaning, or sighing: Repetitive or unusual vocal sounds.
• Yelling or shouting: Calling out in distress, especially during care activities.
• Crying or whimpering: Unexplained emotional expressions that may signal pain.
• Rapid or noisy breathing: Labored breathing, shortness of breath, or breath-holding.

Behavioral and Activity Changes

• Refusing food or a change in appetite: A sudden disinterest in eating or drinking.
• Disrupted sleep patterns: Sleeping more or less than usual, or being restless during sleep.
• Increased withdrawal or social isolation: Avoiding interaction or becoming withdrawn from usual activities.
• Aggressive or resistant behavior: Lashing out, hitting, or resisting care activities like dressing or bathing.
• Increased confusion: Worsening disorientation or agitation that is not typical.

Standardized Pain Assessment Tools

To make observation more systematic and reliable, healthcare professionals and trained caregivers can use standardized, validated tools. These scales translate a person's behaviors into a numerical pain score, allowing for consistent tracking and evaluation of treatment effectiveness.

The PAINAD Scale

Recognized by the Hartford Institute for Geriatric Nursing, the Pain Assessment in Advanced Dementia (PAINAD) scale is a highly effective observational tool. It assesses five specific behaviors, scoring each from 0 to 2 for a total score of 0 to 10.

The five PAINAD categories are:

1. Breathing: Observing for heavy or rapid breathing, or holding breath.
2. Negative Vocalization: Listening for moaning, groaning, or crying.
3. Facial Expression: Watching for grimacing, frowning, or a look of distress.
4. Body Language: Noticing tense posture, fidgeting, or clenching of fists.
5. Consolability: Assessing if the individual can be comforted or distracted.

The Abbey Pain Scale

This Australian-developed tool is also used to assess pain in nonverbal people with dementia. It scores six items on a scale from 0 (absent) to 3 (severe), with a total score indicating pain severity (no, mild, moderate, or severe).

The six Abbey Pain Scale items are:

1. Vocalization: Verbal sounds or moans.
2. Facial Expression: Facial cues like grimacing or looking tense.
3. Body Language Change: Any shift in posture or movement from a baseline.
4. Behavioral Change: A change in routine behaviors, such as agitation or withdrawal.
5. Physiological Change: Observable signs like changes in skin color, breathing, or sweating.
6. Physical Change: Physical appearance, such as swelling or guarding a body part.

Comparison of Pain Assessment Tools

Feature	PAINAD Scale	Abbey Pain Scale
Number of Items	5	6
Behaviors Assessed	Breathing, negative vocalization, facial expression, body language, consolability.	Vocalization, facial expression, change in body language, behavioral change, physiological change, physical change.
Scoring Range	0-10	0-18
Developed For	Advanced dementia and cognitively impaired, non-communicative patients.	Late-stage dementia, often used in residential settings.
Best Used During	Observation during activity (e.g., bathing, transferring).	Movement-based assessment, often during care activities.
Training Required	Minimal, tool is easy to use for caregivers and staff.	Minimal, designed for a variety of care staff.
Strengths	Simple, quick to use, validated for nonverbal patients.	Broad inclusion of physical and physiological changes.
Limitations	Some behaviors (breathing, consolability) can be hard to assess consistently.	May not distinguish distress from pain, relies on interpretation.

The Role of Caregiver and Family Insight

Caregivers who know the person well have invaluable insights into their baseline behaviors. They can often notice subtle changes that a professional might miss. When assessing pain, it is crucial to consult with family members about the individual's history of pain, typical mannerisms, and any recent changes in behavior. For example, a sudden refusal of a favorite food or increased time sleeping could signal underlying discomfort. Maintaining a pain diary to record observations can help identify patterns and triggers.

For more information on the caregiver's role, the Geriatric Pain website offers excellent resources, including printable pain diaries and instructional materials. See their guidelines at GeriatricPain.org.

Addressing Suspected Pain: The Analgesic Trial

When pain is suspected but cannot be definitively confirmed, a time-limited analgesic trial may be necessary under medical supervision. This involves administering a suitable pain medication and carefully observing whether the suspected pain behaviors decrease. If the behaviors improve, it provides strong evidence that pain was the cause. It is important to note that this is a diagnostic step and should be performed carefully, starting with low doses and monitoring for any side effects, especially with stronger medications.

Conclusion

Assessing pain in a person with dementia requires a shift in perspective, moving away from relying solely on verbal communication. By using a combination of careful observation of nonverbal cues, standardized assessment tools like PAINAD, and invaluable insights from caregivers, it is possible to recognize and manage pain effectively. Proper pain management is not just about reducing discomfort; it is a critical step in improving the individual's quality of life, reducing agitation, and fostering a more peaceful daily routine.

Frequently Asked Questions

Can a person with advanced dementia still feel pain?

Yes. Most people with dementia continue to feel pain, even in advanced stages. While their cognitive ability to process and communicate that pain is diminished, the physical sensation remains.

What is the PAINAD scale?

The PAINAD (Pain Assessment in Advanced Dementia) scale is an observational tool used to assess pain in nonverbal dementia patients. It scores behaviors related to breathing, vocalization, facial expression, body language, and consolability to provide a numerical pain rating.

How often should I assess for pain?

Pain assessment should be an ongoing process. For someone with known chronic pain, daily or several times a week may suffice. For acute pain or sudden behavioral changes, more frequent assessment is needed, especially after a pain intervention.

Could agitation or aggression be a sign of pain?

Yes, behavioral changes such as agitation, aggression, or resistance to care are common ways for people with dementia to express pain. When a patient cannot verbalize their discomfort, these behaviors often serve as a protective mechanism.

What if the person says 'no' when I ask if they are in pain?

In individuals with dementia, a 'no' may not be a reliable answer due to cognitive impairment. They may not understand the question or remember the painful sensation. Always rely more on objective, nonverbal observations than a verbal report.

Are there any apps to help with pain tracking in dementia?

Yes, several mobile apps are available for pain tracking. One evidence-based option is the Keele Pain Recorder, which helps users track pain intensity, triggers, and medication effectiveness, and can share the data with healthcare providers.

Should I try non-medication interventions first?

Non-medication interventions like gentle massage, music therapy, or repositioning should be tried first if appropriate. These can often provide relief with fewer side effects than medication. If behavior does not improve, or if the pain is severe, a medical intervention may be necessary.