Knowledge

• Describe common verbal and nonverbal indicators of pain in individuals living with dementia.
• Recognize that pain is highly common in individuals living with dementia, even if they can’t express it in typical ways.
• Identify PAINAD as a tool used by nurses to assess pain in individuals living with dementia.
• Determine situations where reporting to a nurse is necessary for further assessment.

Skills

• Apply observation skills to detect signs of pain in individuals living with dementia.
• Implement a range of non-drug pain relief strategies under the direction of a nurse (per facility policy).
• Make informed decisions about when to escalate concerns to a nurse.

Attitudes

• Develop patience when working with individuals living with dementia.
• Develop a greater awareness of how pain might underlie behavioral changes in individuals with dementia, fostering empathy.

• Understand Pain Assessment Tools that Nurses Use:
  • Become familiar with validated tools like PAINAD or PACSLAC. These help you systematically assess potential pain.
  • Try non-drug Interventions: These are often effective and have minimal side effects (check your facility’s policies):
    • Repositioning and comfort measures
    • Gentle massage or touch
    • Calm, soothing environment
    • Distraction (music, familiar objects)
    • Placing hot/cold packs
    • Hand massages
  • Advocate for Your Resident:
    • Report your observations clearly to a nurse.
    • Don’t hesitate to ask questions about pain medication if you see signs of ongoing discomfort.

Key Takeaways

• Pain is REAL for persons living with dementia, even if they can't tell us in words.
• DIRECT CARE WORKERS are vital in observing and reporting signs of pain.
• A combination of medication AND non-drug strategies offers the most comfort.

The facilitator will need to select a learner (or ask for a volunteer) to be the simulated resident (SR), Evelyn Thompson. Provide the script and notes about portraying the role to the SR. Depending on the number of learners in the group, you may need to assign some participants as simulation observers (use the Observer Worksheet). We recommend no more than 3 direct care workers to participate in the simulation at one time.

1. Prebrief
2. Share the following information with the learners:
3. Review the objectives.
4. What to expect from the scenarios:
   1. You will face situations similar to what you might experience in your daily work, with a focus on recognizing different ways pain can present.
   2. You will use pain observation skills and practice non-drug comfort techniques for a person experiencing pain. I am providing a copy of the PAINAD tool for you to view.
   3. It’s okay not to know. Sometimes the situations can feel complex or confusing. The goal is to practice your observation skills and think critically about when to escalate to the nurse.

5. Ground rules:

   1. Respect. While you may know the simulated resident from different environments, and from different roles, please remain professional to make this an optimal learning environment.
   2. Safety. We prioritize the wellbeing of our simulated residents and you. We will stop the simulation or call a time-out if there are safety concerns.
   3. Open Learning. Please share what you notice, ask questions, and learn from each other. Everyone has different backgrounds and experiences, so we can all learn from each other.
6. Timeline: You will participate in the simulation for 8 minutes. After that, you will participate in the debrief for 15 minutes. Please think out loud during the simulation with questions that come up.
7. Nurse role: My role today is the nurse. If you have anything you need to report about your resident you can report it to me, at the end of the simulation.
8. Observer role: If you are an observer, you will listen to the morning report. Then you will observe the simulation and use the Observer Worksheet to follow along. You will participate in the simulation debrief, sharing observations and questions that come up.

Overview

• Client Name: Evelyn Thompson
• Age: 82
• Diagnosis: Moderate-stage Alzheimer's Disease
• Medical History: History of arthritis (most discomfort in hips and knees), mild hypertension
• Requires variable support to complete activities of daily living depending on the day

Current Situation: Evelyn Thompson has been a resident in a long-term care facility for the past 8 months. She has limited verbal communication but can sometimes follow simple instructions and express basic needs. She is usually cooperative with care but can become agitated in the mornings.

Scenario: You are the morning shift direct care worker assigned to Evelyn Thompson's room. Your task is to assess her wellbeing, identify any signs of pain or discomfort, and gently assist her in getting ready for breakfast.

Setting: Evelyn Thompson's single-occupancy room in the memory care unit of the nursing home. It is around 8:00 AM. The room is softly lit, and the curtains are partially open. Evelyn Thompson is in bed with the sheet pulled up.

Scenario Details: Upon entering, you find Evelyn Thompson curled up on her side, facing away from you. She is whimpering softly.

Things to Consider:

1. Possible Pain Sources
2. Communication Approach with Evelyn
3. Pain Assessment
4. Non-drug Interventions
5. Reporting to the Nurse
   1. Document your observations carefully using the PAINAD tool (pain cues, interventions, Evelyn Thompson's response).

Remember: Patience, gentle touch, and a focus on Evelyn Thompson's nonverbal cues are essential throughout this scenario.

Things to Notice:

• Roberta Bennett's nonverbal cues (facial expressions, body language, sounds).
• What triggers stronger resistance? Specific actions or words?
• Are there moments where she seems calmer or more receptive?

Evelyn Thompson’s (ET) Care Plan

Special Instructions: Assess for pain before movement, go slow, usually cooperative, but can become agitated in the mornings

• Direct care worker asks about pain: Shake your head slightly “no,” continue to seem uncomfortable.

Stage 3: Direct Care Worker Assessment and Care

• Gently turned: When the direct care worker tries to turn you, wince, stiffen your body slightly, and whimper more loudly.
• Change in behavior: Seem less cooperative; you may frown and try to pull away during tasks.
• Escalating discomfort: If the direct care worker presses on your hip area, moan or say "Ow!"

Variations Based on Direct Care Worker Actions:

• Comfort measures: If the direct care worker offers repositioning or warmth, relax your body slightly and decrease the vocalizations (showing it provides some relief).
• Continued lack of response: If the direct care worker seems unsure, increase agitation slightly (fidget, try to curl back up).

Debrief Notes for Evelyn:

• Share frustration: Talk about how frustrating it felt to be in pain but not able to say so clearly.
• Successes: If the direct care worker picked up on your cues, point out specific things they did well (gentle touch, observing your face).
• Importance of observation: Emphasize how even small changes in behavior can be clues.

Tips for Playing Evelyn:

• Consistency: Keep your portrayal aligned with moderate dementia throughout.
• Subtlety is key: Start with subtle signs of discomfort and escalate gradually.
• Respond to the direct care worker: Adjust your cues slightly based on their actions to make it a realistic interaction.

Additional Considerations and If Time Allows

Team Dynamics:

Collaboration

• How did you work together as a team to assess the residents’ pain?
  • Did you assign specific roles or divide tasks? If so, how did that work?

Communication

• How did you share your observations and concerns with each other?
  • Were there any moments where communication could have been improved?

Collective Decision-Making

• How did you decide on the best interventions as a team?
  • How did you reach a decision about when to escalate to the nurse? Were there any differing opinions?

Recognizing Bias

• Did anyone have any preconceived notions about pain assessment in persons living with dementia that may have influenced their observations or actions?
  • How do we ensure that we don't underestimate pain in these individuals?

Balancing Comfort and Autonomy

• How do you balance the need to provide pain relief with respecting a resident's potential wishes or prior directives (if known)?
  • Are there situations where trying a mild pain medication might be ethically justified even if the resident cannot directly express their pain?

Advocacy

• How can a direct care worker team collectively advocate for a resident who may not be able to advocate for themselves regarding pain management?

Supplies

• Bed and Linens: A simple, single bed set up with pillows and blankets to allow Evelyn to be positioned realistically.
  • Personal Belongings: A few items scattered around the room (photos, a familiar object) help create the sense of the resident’s living space.
  • Clothing for Evelyn: Comfortable pajamas or loose-fitting clothes that are easy to manipulate during the care scenario.
  • Non-drug pain management equipment (per facility policies):
    • Lotion for massage
    • Warm pack
    • Ice pack
    • Extra pillows
    • Music
  • Distraction Item: A simple object (soft toy, picture book) that can be used if Evelyn becomes agitated.

Setup

• Bed: Positioned so the direct care worker can approach from either side. Ensure there is enough space around the bed for movement.
  • Observer space: If you have learners observing, designate an area where they can watch without being distracting to the simulation participations engaging with Evelyn
  • If using Observation Worksheets, have them ready with clipboards or a small table for the observers.
  • Debrief area: Ensure you have a space for debriefing immediately after the simulation.
  • Provide the volunteer resident with a detailed script and let them practice the key nonverbal pain cues before the simulation.

Instructions: Use this worksheet to guide your observation. Take notes here or on a whiteboard in the classroom. Be ready to share for the debrief and add to the discussion.

• Focus on specifics: Note details of both Evelyn’s behavior and the direct care workers’ actions.
  • Think critically: Don’t just list observations, analyze how they influenced your perception

of the situation.

1. Nonverbal Pain Cues:
   • Facial Expression: Relaxed / Grimacing / Frowning / Other:                   
   • Body Position: Relaxed / Favoring one side / Guarded (protecting a body area)/ Other:      
2. Response During Interactions / Care
   • Changes When Touched or Moved: Increase or decrease in vocalizations?

Stiffening? Pulling away? Where?                                                                          

• Changes in Behavior During Care Routines: More cooperative or more resistant compared to usual? Any specific tasks seem to cause discomfort?

3. Non-Drug Interventions: Response to comfort measures (if attempted):
   • Did repositioning, a warm compress, or distraction seem to lessen agitation or signs of pain?                                                    
   • Signs of escalating pain
4. Communication (with the resident, with each other, with deciding to report to a nurse)
   • Was the communication clear? YES / NO
   • Did they focus on what was observed? YES / NO
   • Did they communicate well with Evelyn? YES / NO
   • Were concerns reported to the nurse? YES / NO
5. Surprise: What was one thing you observed that you hadn't expected to see?
6. Key Takeaway: What is the most important thing you learned about pain assessment in dementia from observing this simulation?

Healthcare providers use the PAINAD tool to assess and manage pain in individuals with dementia. The tool was developed to assist providers in evaluating pain levels to determine the best course of action in caring for their patients. The PAINAD is a 2-point scale based on observing and assessing physical signs and non-verbal behavior associated with pain.

The PAINAD measures five categories:

1. breathing independent of vocalization
2. negative vocalization
3. facial expression
4. body language
5. consolability

Each category is scored on a scale of 0-2 for a total score of 0-10. A higher PAINAD score indicates increased levels of pain.

When assessing pain individuals with dementia, it is important to remember that there are no standard “cut-offs” for each symptom and that the scale should be used as a guide for observation and evaluation.