1. Mrs. Jones Has Pain: How Will You Know and What Will You Do?
Palliative Care for People with Dementia: Why Comfort Matters
April 29, 2015
Carol O. Long, PhD, RN, FPCN, FAAN

2. Learning Objectives Rule of 3’s
Describe processes for assessing pain in persons with advanced dementia
Identify when behaviors suggest that a person with dementia is in pain
Present key clinical management strategies for addressing pain in persons with advanced dementia
Rule of 3’s

3. Meet Mrs. Jones! 86 yo, moderate AD
Resident of Happy Valley Nursing Facility!
Loves food! Can still be engaged.
Difficulty ambulating but still mobile, no complaints of pain
Arthritis, surgeries, MVA; no analgesics

4. What Do We Know About Pain?
Definition: “Pain is whatever the person says it is, experienced whenever they say they are experiencing it” (McCaffery & Pasero, 1999)
Pain is a silent epidemic!
Reported in 25-50% of older persons living in the community (ELNEC Geriatric, 2012)
45-80% of nursing home residents (ELNEC Geriatric, 2012)
Older adults with dementia who cannot self- report

5. What Do We Know About Pain and Dementia?
50% of people in nursing homes have some level of cognitive impairment
Older adults in nursing homes and those with cognitive impairment or dementia often live with pain that is undetected, undertreated or poorly managed
(Fink & Gates, 2010; Herr, 2010)

6. What Do We Know About Pain and Dementia?
Tolerance to acute pain possibly increases but pain threshold does not change – people with dementia sense even low levels of pain
Absence of vital sign changes in people with dementia experiencing acute pain does not mean absence of pain

7. What Do We Know About Pain and Dementia?
Cognitive impairment may alter response to pain therapies – people with dementia may require more analgesic use (Benedetti, 2006)
Pain does negatively affects cognitive function (Morrison et al., 2003)
There is no empirical evidence that dementia results in the loss of ability to feel pain!

8. Challenges to Pain Assessment in Dementia
Person with dementia concerns:
“Do you have pain?”
Older adults describe pain as discomfort, hurting or aching and they may under-report their pain
Discomfort / pain from emotional distress, constipation, cold, hunger, and fatigue
Increased affective pain from difficulty managing everyday activities related to the disease state
Pre-existing conditions: arthritis, disc compression, neuropathies, and more…

9. Challenges to Pain Assessment in Dementia
Staff & organizational concerns:
Concerns over use of opioids and potential delirium
Lack of consistent staff can be a problem or caregivers may not ‘know’ the person
Reluctance to use opioids without a clear diagnosis
Psychotropics mask pain symptoms
Staff may forget what risk factors are present that may precipitate pain
Staff may not know what they don’t know related to pain and behaviors
Family concerns:
Fear of opioids
Do not understand or know pain behaviors

10. SEE: http://prc.coh.org/elderly.asp, http://www.geriatricpain.org
General Principles
We need to rethink how we come to know if a person with dementia has pain – really, really, really look at the behaviors!
Don’t use: “No complaints of pain” / Pain is the 5th Vital Sign
Adopt: Assume Pain is Present (APP) when behaviors emerge that suggest pain
Pain is everyone’s responsibility: Team effort is necessary
If we don’t assess, we can’t address:
Guiding framework: Assess – Address – Evaluate – Document
Use evidence-based guidelines and tools
SEE:

11. The Hierarchy of Pain Assessment Guidelines
Attempt to elicit self-report from person. If the person unable to self-report, document.
Identify pathologic conditions or procedures that may cause pain.
List the person’s behaviors that may indicate pain.
Identify behaviors that caregivers and others knowledgeable about the person think may indicate pain.
Make a plan to address pain.
(Herr et al., 2011; Pasero & McCaffery, 2011)

12. Assess Pain 1. Investigate what may be causing the pain
Complete physical examination
Review medical history: Consider common pain etiologies in older adults (e.g. arthritis, UTI, fracture, etc.)
Check on basic needs: physical, social, psychological, environmental, spiritual and person’s life story/biography
Ask: What are the behaviors that are new or escalating? What is this person trying to communicate to me through their dementia- related behaviors?

13. Assess Pain
2. Complete and document a comprehensive pain assessment & use evidence-based assessment tools. Secure as much information as possible:
Location – use a body chart
Character of pain (nociceptive-neuropathic)
Duration – how long has pain been a problem
Pattern (Intermittent, constant, mixed), type of pain (acute-chronic)
Frequency – how often
Associated symptoms
Modifying factors: what makes pain worse or better
Analgesic history
How does pain affect function? What are the behaviors?
Intensity (Use appropriate rating scale)

14. Discuss & Document Behaviors
Assess Pain
Discuss & Document Behaviors
Obvious
Grimacing
Calling out
Bracing
Guarding
Rubbing
Less Obvious
Changes in activity level
Sleeplessness
Reluctance to move
Withdrawal
Decreased appetite
Increased or new behaviors

15. “Detecting Pain in Dementia: Focus on Behaviors”
Alliance of State Pain Initiatives Resource Center
Video Clip
“Detecting Pain in Dementia: Focus on Behaviors”

16. Assess Pain
3. Use evidence-based assessment tools and ascertain intensity of pain:
Self-report tools: ask if the person has pain! Then try to obtain pain intensity rating. 3 tools.
Behavioral assessment tools: List behaviors that suggest pain. Used for individuals who are unable to self-report. Total score is derived – cannot be used to calibrate intensity. 3 tools.

17. Self-Report Tools 1. Numeric Rating Scale (NRS) 0 1 2 3 4 5 6 7 8 9 10
No Pain Mild Pain Moderate Worst Possible
Pain Pain
Ask if the person has pain. Then ask …“On a scale of 0 to 10, with 0 meaning no pain and 10 meaning the worst pain you can imagine, how much pain are you having now?”
Ask them to point to the number on the scale.

18. Self-Report Tools 2. FACES Pain Scale-Revised (FPS-R)
The FPS-R is a self-report tool that a person may prefer over a NRS; often due to the pictures of 7 faces that range from happy to sad and distressed.
Ask the person if they have pain. Then ask…“The faces show how much pain or discomfort someone is feeling. The face on the left shows no pain. Each face shows more and more pain and the last face shows the worst pain possible. Point to the face that shows how bad your pain is right NOW.”
Scoring: Score the chosen face as 0, 2, 4, 6, 8 or 10, counting left to right with 0 = “no pain” and 10 = “worst pain possible”
(IASP, 2012)

19. Self-Report Tools
3. Verbal Descriptor Scale (VDS) – Pain Thermometer

20. Behavioral Assessment Tools
1. Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC)
The PACSLAC is a comprehensive pain assessment tool containing 60 items scored as present or not (use of a checkmark) within the following categories:
Facial Expression (13 items)
Activity/Body Movement (20 items)
Social/Personality/Mood (12 items)
Other (Physiological changes/Eating/Sleeping changes/Vocal Behaviors) (15 items)
Useful for comprehensive pain assessment.
(Fuchs-Lacelle & Hadjistavropoulos, 2004)

21. Behavioral Assessment Tools
2. Pain Assessment in Advanced Dementia (PAINAD)
PAINAD can be used by nurse / CNA to screen for pain-related behaviors when observing an activity for 3 – 5 minutes. Score a ‘0’, ‘1’, or ‘2’. Maximum score = 10. 1 2
Score
Breathing
Independent of Vocalization
Normal
Occasional labored breathing,
short period of hyperventilation
Noisy labored breathing, long period of hyperventilation, Cheyne-stokes respirations
Negative Vocalization
None
Occasional moan or groan,
low level of speech with a negative or disapproving quality
Repeated troubled calling out, loud moaning or groaning, crying
Facial Expression
Smiling or inexpressive
Sad, frightened, frown
Facial grimacing
Body Language
Relaxed
Tense, distressed pacing,
fidgeting
Rigid, fists clenched, knees pulled up, pulling or pushing away, striking out
Consolability
No need to console
Distracted or reassured by voice or touch
Unable to console, distract or reassure
Total
(Warden, Hurley, & Volicer, 2003)

22. Behavioral Assessment Tools
3. Checklist of Nonverbal Pain Indicators (CNPI)
Ask if the person has pain…Then observe the person for the following behaviors at rest and during movement. Score a ‘0’ if the behavior was not observed, ‘1’ if occurred briefly during activity or at rest. Total number of indicators is summed with movement, at rest and overall. No cut-off score.
Behavior 
With Movement
At Rest
1. Vocal complaints: nonverbal (Sighs, gasps, moans, groans, cries)
2. Facial grimaces/winces (Furrowed brow, narrowed eyes, clenched teeth, tightened lips, jaw drop, distorted expressions)
3. Bracing (Clutching or holding onto furniture, equipment, or affected area during movement)
4. Restlessness (Constant or intermittent shifting of position, rocking, intermittent or constant hand motions, inability to keep still)
5. Rubbing (Massaging affected area)
6. Vocal complaints: verbal (Words expressing discomfort or pain [e.g. ‘ouch’, ‘that hurts’];cursing during movement; exclamations of protest [e.g. ‘stop’, ‘that’s enough’])
Subtotal Scores
Total Score
(Feldt, 2000)

23. Mrs. Jones has fallen! Slid from her chair to the floor
Could she have pain? How will you know and communicate it?

24. Address Pain When addressing pain…
Connect the assessment with the intervention and goals of care
Address unmet needs
Use nonpharmacologic interventions
Add pharmacologic interventions – start with serial trial intervention for chronic, persistent pain; aggressively manage acute pain

25. 1. Address Unmet Needs Therapeutic communication
Positioning and repositioning
Movement / ambulation
Toileting
Hunger and thirst
Ambulation
Milieu: heat / cold room
Sensory-stimulating or sensory-calming activities
A hug!

26. 2. Use Nonpharmacologic Interventions
Physical
Psychological*
Massage
Cold
Heat
Gentle Vibration
Positioning
Exercise
Sensory-integrated measures - use 5 senses
Distraction
Relaxation
Music
Comfort Foods
Imagery
Controlled Breathing
* Individual differences will vary
Numerous examples of physical modalities can be used as nonpharm measures:
Massage
Cold
Heat
Gentle Vibration
Positioning
Exercise
Sensory-integrated measure - use 5 senses
Psychological:
Distraction
Relaxation
Music
Comfort Foods
Imagery
Controlled Breathing

27. 3. Add Pharmacologic Interventions
WHO 3-Step Analgesic Ladder is used based on verbal report and / or intensity of behavioral symptoms
3 categories:
Non-opioids (e.g. acetaminophen, NSAIDS)
Opioids
Adjuvants /
Co-analgesics
(WHO Pain and Palliative Care Communications Program, 2006)

28. Pharmacologic Interventions: Chronic / persistent
Start with serial trial intervention
NOTE: Antipsychotics do not treat pain
Try pain medicine
Behaviors suggest it
could be pain
Behaviors decrease
It’s probably pain!

29. Pharmacologic Interventions
Medication Principles:
Initiate: Start low, go slow except with acute pain and titrate to effect while managing any side effects
Schedule it! NO p.r.n. and document results
Pain medication/analgesic + non-pharmacologic intervention is always considered

30. What you can do?

31. Summary Assessment Address pain We reviewed communication strategies
Pain in the 5th Vital Sign – make it visible!
3 self-report tools
3 behavioral observation tools + common behaviors
5-step hierarchy
Address pain
3 elements: address unmet need, nonpham and pharm
WHO 3-Step Analgesic Ladder
We reviewed communication strategies

32. Mrs. Jones has Pain…Now you know, what will you do?
What does your organization do for persons with pain – in general and for persons with dementia?
What are your policies and procedures?
What are your practices?
What could you do better?
What tools can you take back to use in your setting?

33. Carol O. Long, PhD, RN, FPCN, FAAN E-mail: carollongphd@gmail.com
Thank-you!
Questions?
Carol O. Long, PhD, RN, FPCN, FAAN

34. Selected References: Assessment Tools
American Geriatrics Society (AGS) Panel on Pharmacological Management of Persistent Pain in Older Persons. (2009). The pharmacological management of persistent pain in older persons. Journal of the American Geriatrics Society, 57(8), doi: /j x.
Benedetti, F., Arduino, C., Costa, S., Vighetti, S., Tarenzi, L., Rainero, I., & Asteggiano, G. (2006). Loss of expectation-related mechanisms in Alzheimer's disease makes analgesic therapies less effective. Pain, 121(1-2), doi: /j.pain
City of Hope Pain Resource Center. A State of the Art Review for Assessment of Pain in Nonverbal Older Adults. Retrieved May 23, 2012 from
Feldt, K. S. (2000). The Checklist of Nonverbal Pain Indicators (CNPI). Pain Management Nursing, 1(1),
Fuchs-Lacelle, S., & Hadjistavropolous, T. (2004). Development and preliminary validation of the pain assessment checklist for seniors with limited ability to communicate (PACSLAC). Pain Management Nursing, 5(1),
Herr K. A, Mobily P. R. (1993). Comparison of selected pain assessment tools for use with the elderly. Applied Nursing Research, 6(1),

35. References: Assessment Tools
Herr, K., Coyne, P. J., McCaffery, M., Manworren, R., & Merkel, S. (2011). Pain assessment in the patient unable to self-report: position statement with clinical practice recommendations. Pain Management Nursing, 12(4), doi:
International Association for the Study of Pain (IASP). (2001). Faces pain scale- revised. Retrieved October 8, 2014 from: pain.org/Education/Content.aspx?ItemNumber=1519
Pasero, C., & McCaffery, M. (2011). Pain assessment and pharmacologic management. New York, NY: Mosby Elsevier.
Warden, V., Hurley, A. C., & Volicer, L. (2003). Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale. Journal of the American Medical Directors Association, 4(1), 9-15.