Pain Assessment in Nonverbal Older Adults with Advanced Dementia

Perspectives in Psychiatric Care Vol. 41, No. 3, July-September, 2005 99

Blackwell Publishing, Ltd.Oxford, UKPPCPerspectives in Psychiatric Care0031-5990© Blackwell Publishing 2005413

ORIGINAL ARTICLE

Pain Assessment in Nonverbal Adults with Advanced Dementia

Pain Assessment in Nonverbal Older Adults with Advanced Dementia

Marianne Smith, MS, ARNP, CS

TOPIC

:

Pain assessment is a particular challenge

among individuals with advanced dementia who

lack the ability to formulate and express their

experience of discomfort.

PURPOSE

:

Awareness of pain scales and methods

specifically designed for use with nonverbal

individuals with dementia is critical to expanded

use and testing in clinical settings.

SOURCES

:

Computerized literature searches using

four databases revealed the five observational

scales and two caregiver reports methods

reviewed.

CONCLUSIONS

:

A small number of valid, reliable,

and sensitive scales are available for use by nurses

and allied health personnel. Each has strengths

and limitations and all would benefit from

additional testing.

Search terms:

Dementia care, pain assessment,

advanced dementia

Marrianne Smith, MS, ARNP, CS, John A. Hartford Foun-dation Building Academic Excellence Scholar, University ofIowa, College of Nursing.

Overview of the Problem

The role of discomfort, both emotional and phys-ical, is well known and accepted as an antecedent tobehavioral disturbances among people with dementia(Hall & Buckwalter, 1987; Teri & Logsdon, 2000;Volicer & Hurley, 1999). The loss of ability to process,understand, and describe internal and externalexperiences regularly leads to behavioral expressionsof distress, particularly as the disease progresses(Kovach, Weissman, Griffie, Matson, & Muchka, 1999;Volicer, 2001). Like other aging individuals, those withdementia are likely to have one or more chronic healthconditions that cause pain, which, in turn, contributesto unnecessary discomfort, dysfunctional behavior,and diverse behavioral symptoms, and potentialworsening of comorbid conditions. As a result, painis an important factor to assess in older adults withdementia.

Nurses, and other allied healthcare providersthat provide day-to-day care, are in key positions tofacilitate accurate assessment and adequate treatmentof pain, particularly among individuals in late-stagedementia who lack the ability to process theirexperiences and communicate needs verbally. Nomatter what the care setting—home, nursing home, orinpatient unit—both advanced practice and generalistnurses regularly play pivotal roles in managingcomplex patient care problems like pain assessment inadvanced dementia. Through direct care, supervisory,educational, consultation, and interdisciplinary roles,nurses may positively influence care practice. Enhancedawareness of methods to accurately depict the painexperiences of nonverbal individuals with advanceddementia are critically important to effective care,treatment, and management across the healthcarecontinuum.

100 Perspectives in Psychiatric Care Vol. 41, No. 3, July-September, 2005


Purpose

This review of literature highlights factors relatedto pain assessment among older adults with advanceddementia who are unable to communicate verbally.Background factors, including rates of pain among olderadults as a group, common barriers to pain assessmentamong elderly, and problems inherent to usual painassessment methods, are briefly reviewed to providea framework for understanding pain assessment inadvanced dementia. Specific problems created bydementia are then reviewed, including the need forpain definitions and methods that address the uniqueneeds of those who are unable to communicate verbally(alternatively called nonverbal and noncommunicativethroughout this paper). Seven assessment methods arereviewed, including brief discussion of items andpsychometric properties. Conclusions related to possiblefuture steps to further strengthen assessment scalesand their use in practice are offered.

Sources of Literature Reviewed

Articles describing pain assessment methods thatdid not rely on verbal report were identified as part ofa larger literature review related to pain measurementamong older adults (Smith & Bjoro, 2002). Computerizedliterature searches of four databases (i.e., MEDLINE,CINAHL, PubMed, and EMB Reviews) used variouscombinations of search terms related to pain and olderadults, and limited searches to older adults, research,and to a lesser extent, review articles. Narrower searchesusing combinations of dementia and pain focused onpain assessment methods. Assessment tools devel-oped for use with cognitively impaired and nonverbalindividuals were identified, reviewed, and includedhere. In addition to computerized literature searches,additional resources related to pain assessment inadvanced dementia were identified via professionalcolleagues engaged in the field and review of keyreferences. Five observational scales and two proxymethods that rely on the report of a caregiver who

knows the person with dementia well are reviewedhere. Psychometric properties are summarized in tableformat to allow easy comparison and evaluation forpotential inclusion in clinical practice and research.

Pain in Older Adults

Consideration of pain in advanced dementia isperhaps best understood from the perspective of thelarger picture of pain in late life. Pain is a commonproblem among older adults, affecting as many as 25%to 86% of community-dwelling older adults (Herr, 2002)and 40% to 80% of individuals living in long-term carefacilities (AGS, 1998; Cutson, 2001; Thomas, Flaherty,& Morley, 2001). Pain directly causes suffering and isassociated with the worsening of many health condi-tions including decreased physical function, impairedmobility, decreased socialization, depression, sleep dis-turbance, and increased health utilization costs (AGS,1998; Ferrell, Ferrell, & Rivera, 1995). In spite of itsknown prevalence and associated risks, pain is oftenunrecognized and frequently undertreated, particularlyin older adults with cognitive impairment (Ferrell,1995; Mobily & Herr, 2001; Weissman & Matson, 1999).

A variety of barriers to pain assessment and treat-ment have been identified. Myths about older adultscontribute to under-treatment of pain, including thecommon misconceptions that pain is a “natural”consequence of aging and cannot be avoided, that ifolder adults do not complain of pain, they must notexperience it, and that older adults have decreasedsensitivity to pain (Herr, 2002). Political and socialpressures to control illicit drug use, fear of producingaddiction, and concern about differing effects of painmedications on older adults also contribute to problems(Thomas et al., 2001). Staffing shortages and staff whoare inadequately trained to assess pain are also believedto contribute to problems in long-term care settings(Blomqvist & Hallberg, 2001; Cutson, 2001). Finally, thebeliefs of older adults themselves, like being afraid tocomplain or bother busy nurses, and thinking they needto learn to live with pain, further contribute to problems


(Feldt & Finch, 2001). Although older adults, as a group,are at risk for under-treatment of pain, problems amongcognitively impaired older people are even moresevere (AGS, 1998; Miller, Nelson, & Mezey, 2000).

Pain in Older Adults with Dementia

Alzheimer’s disease and related progressive dis-orders create additional disabilities that interfere withpain detection and treatment. The essential features ofdementia, including memory impairment, disturbancein executive function, aphasia, apraxia, and agnosia(APA, 2000), progressively interfere with all aspects offunction. Loss of ability to use language is perhaps themost widely recognized confounding factor in painidentification (Farrell, Katz, & Helme, 1996). Of equalor more importance is the increasing loss of ability tointrospect and comprehend internal states (Kovach et al.,1999), a process that is necessary to accurately identifysensations, feelings, and experiences. Finally, two cul-tural beliefs, that nothing can be done for individualswith dementia, and that persons with dementia do notexperience pain so do not require medication or otherinterventions (Miller et al., 2000) create additionalbarriers to pain assessment in dementia.

Over the last decade, numerous investigators haveestablished that cognitively impaired older people areable to report pain using one or more method (Ferrell,1995; Ferrell et al., 1995; Herr, 2002; Mobily & Herr,2001; Parmelee, Smith, & Katz, 1993). However, thesestudies have systematically eliminated cognitivelyimpaired patients who are noncommunicative. Forexample, Ferrel and colleagues’ pioneering work (1995)on pain in cognitively impaired patients excluded21% of subjects because they were “mute and unre-sponsive, and no meaningful information could beobtained” (p. 594). This perspective is echoed elsewherein the literature and underscores the current emphasisplaced on self-report of pain. Given the fact thatlanguage loss is inevitable in the most advanced stagesof dementia, valid and reliable methods to assess painin noncommunicative older adults are clearly needed.

Definitions of Pain and Advanced Dementia

Common definitions of pain include the fact that itis a complex, multidimensional, subjective, unpleasant,and emotional experience that is mediated by sensoryexperiences and nociceptive events, and influencedby social, cultural, and individual differences (Mobily& Herr, 2001). McGuire conceptualized the multi-dimensional, subjective and personal experience of painas having six primary dimensions: physiologic, sensory,affective, cognitive, behavioral, and sociocultural(McGuire, 1992). The important emphasis placed onpain as a subjective and personal experience simulta-neously stresses self-report as the most valuableindicator. For example, the widely used definition ofpain as being “whatever the experiencing person

says it is

and exists whenever he or she

says it does

”(McCaffery & Beebe, 1989) underscores this belief. Forsome, pain report is the “gold standard” of pain assess-ment in older adults (Pickering, Eschalier, & Dubray,2000), a perspective that is illustrated by belief that theonly reliable evidence of pain is a patient’s self-reportto the question, “Do you have pain right now?”(Thomas et al., 2001). While pain experienced by thosewith advanced dementia will likewise be a personalexperience that is unpleasant, emotional, complex, andmultidimensional, the definition of pain used must notrely on self-report.

In the limited work that has been conducted in painassessment among nonverbal patients with advanceddementia, the term

discomfort

is often used inter-changeably with

pain

. Hurley and colleagues (1992)defined discomfort in advanced dementia as “a negativeemotional and/or physical state subject to variation inmagnitude in response to internal or environmentalconditions” (p. 369). This definition was operational-ized as being the presence of behaviors that signalnegative emotional and/or physical states and thatcan be observed by a trained rater who is unfamiliarwith the patient’s usual behavior (Hurley, Volicer,Hanrahan, Houde, & Volicer, 1992). Other definitionsof pain and/or discomfort among nonverbal patients



with advanced dementia often are based on thisearly definition (Kovach, Noonan, Griffie, Muchka, &Weissman, 2001; Simons & Malabar, 1995). Of interest,Hurley and colleagues most recently used the term

pain

instead of

discomfort

, defining pain simply as amultifactorial symptom expressed by several signs butforming a single construct (Warden, Hurley, & Volicer,2003). Thus, observable behaviors, or signs, are thefoundation of pain assessment in advanced dementia.In this review of literature, the terms

discomfort

and

pain

are assumed to address the same construct whenapplied to nonverbal persons with advanced dementia.

Assessing Pain in Advanced Dementia

Measurement of pain in nonverbal patients withadvanced dementia has progressed slowly over the last15 years. The pioneering work conducted by Volicer,Hurley, and colleagues (Hurley & Volicer, 2001; Hurleyet al., 1992; Volicer, Fabiszewski, Rheaume, & Lasch,1988; Warden et al., 2003) continues to be the backboneof assessment methods today. The following review ofassessment methods targets observational methods thatmay be used by any trained provider and thus may beespecially valuable in clinical settings. Two additionalpain assessment methods that rely on caregiver report,and which may be more valuable in consultation andliaison roles, are also described. Information about thescales’ items (Table 1) and psychometric properties(Table 2) are summarized and provided in table formatto facilitate comparison.

Comfort Checklist

The importance of meeting comfort needs inadvanced dementia was first described by Volicerand colleagues (1988) as part of a text that addressedclinical management of people with Alzheimer’sdisease. The variety of factors that could easily predis-pose persons with advanced dementia to discomfortwas emphasized and included contractures, arthriticevents, unwitnessed injuries, and an array of inter-

current illnesses (Volicer et al., 1988). The need forobjective assessment of noncommunicative patients ledto the development of the Comfort Checklist, a descrip-tive scale that focuses on documentation of behavioralsymptoms that signal distress and possible pain.

The Comfort Checklist includes five domains ofassessment: vocalization, motor signs, behavioralindicators, facial expressions, and miscellaneous symp-toms. Specific signs are specified for each domain withsuggested rating from none to moderate to severe.Refer to Table 1, “Comparison of Pain Scale Items,” toreview assessment parameters. Although the checklistdoes not assign numeric rating of discomfort, it clearlypoints to the complex and multifactoral assessmentthat may be needed to assure comfort among nonverbalpatients with Alzheimer’s disease. The accompanyingtext emphasizes the importance of using behavioralcues as indicators of discomfort or pain, and likensassessment processes to those used with infants andchildren who lack language. Although the care needs ofadults with dementia and children are not analogous,the “process of elimination” used to assess possible causesof crying in infants parallels the type of assessmentrequired for nonverbal patients with Alzheimer’sdisease. In many care situations, descriptive methodslike the checklist are valuable early in the assessmentprocess when deciphering possible antecedents tobehavioral symptoms is underway.

Discomfort Scale in Dementia of the Alzheimer’s Type (DS-DAT)

Work to develop and refine a valid and reliablemethod to assess discomfort in advanced dementiawas described by Hurley and colleagues (1992). Asnoted earlier, discomfort was conceptually defined as“a negative emotional and/or physical state subjectto variation in magnitude in response to internal orenvironmental conditions” (p. 369) and operationalizedas “the presence of behaviors considered to expressa negative and/or physical state that are capable ofbeing observed by a trained rater unfamiliar with the


Table 1. Comparison Pain Scale Items

Comfort Checklist

Observed Pain Behavior Scale


Checklist of Nonverbal Pain Indicators (CNPI)

Pain Assessment in Advanced Dementia (PAINAD)

Pain Assessment in the Dementing Elderly (PADE)

Five categories of comfort/potential discomfort are described and rated on a 3-point scale from none to moderate to severe.

1. Vocalizations

■

Verbalizes complaint

■

Wailing

■

Crying

■

Moaning

2. Motor signs

■

Restlessness

■

Agitation

■

Pacing

■

Fidgeting

■

Posture/gait change

■

Muscular rigidity

■

Tense fingers

■

Guarding

3. Behaviors

■

Anxiety

■

Resistiveness

■

Hypersensitivity to touch

■

Signs of depressed mood

■

Abnormal sleep pattern

Seven domains are rated as follows:

Verbal response

1. Responsive and alert

2. Responsive on approach by nurse

3. Responsive on approach by significant others

4. Responsive on approach by member of multidisciplinary team

5. Unresponsive6. Crying7. Verbal

expression, e.g., “Ouch”

8. Other verbal expression; specify

Facial expression

9. Looks calm relaxed

10. Looks sad depressed

11. Looks in pain: specify

Body language

12. Relaxed and awake

13. Relaxed and asleep

Nine behavioral indicators of discomfort are included:1. Noisy breathing2. Negative

vocalizations3. Content of

facial expression4. Sad facial

expression5. Frightened

facial expression6. Frown7. Relaxed body

language8. Tense body

language9. FidgetingEach item is following a complex rating scale that includes nine combinations of each of three characteristics of pain that are then rated from 0 to 3 per item. Each combination includes a determination of the following three variables:

■

Frequency

: number of episodes during a 5-min period

Six pain behaviors are scored as present or absent with a total score ranging from 0 to 6 pain behaviors observed.

■

Verbal complaints such as “ouch,” “that hurts,” or “stop”

■

Nonverbal vocalization such as sighs, gasps, moans, groans, or cries

■

Facial grimacing or wincing, clenched teeth, furrowed brow, tightened lips, or narrowed eyes

■

Bracing behavior characterized by clutching or holding an affected area during movement

■

Massaging the affected area

■

Restlessness characterized by constant or intermittent shifting of position, rocking, or inability to keep still

Five domains are rated from 0 to 2 with specific item definitions provided for each parameter included in the rating scheme.

Breathing: independent

of vocalization

0 = Normal1 = Occasional labored breathing; short period of hyperventilation 3 = Noisy labored breathing; long period of hyperventilation; Cheyne-Stokes respirations

Negative vocalization

0 = None1 = Occasional moan or groan; low level of speech with negative or disapproving quality 2 = Repeated troubled calling out; loud moaning or groaning; crying

Facial expression

0 = Smiling or inexpressive

Twenty-four items in three domains are rated from 1 to 4. Fifteen items are rated with descriptive anchors and nine include descriptors for each point.

Physical signs

1. “Sad” facial expression

2. “Anxious/frightened” facial expression

3. Frowning4. “Tense”

body language5. Restlessness6. Grimacing,

bracing, groaning during transfers

7. Guarding affected area

8. Moaning, groaning

9. Distress speech, vocalizations

10. Language coherence, complexity

11. Loud, gasping breathing

12. Rapid breathing, hyperventilation

13. Grooming, overall appearance



■

Poor appetite

■

Lacks animation, spontaneity

■

Lethargy

4. Facial

■

Facial grimacing

■

Wincing

■

Wrinkled brow

■

Frightened appearing

■

Looks sad/worried

5. Miscellaneous

■

Cautious breathing

■

Shallow or rapid breathing

■

Family/staff report discomfort

14. Not relaxed with drawn-up knees

15. Not relaxed, touching presumed area of pain

16. Not relaxed and stiff

Physiological change

17. Vital signs (TPR, BP) within patient’s normal

18. Vital signs changed: specify

19. Other physiological change

Behavioral change

20. Behaviors not listed above: specify

Feedback from others

21. Not in pain/comfortable

22. In pain/uncomfortable

Conscious state

23. Drowsy24. Disoriented:

specify25. Unconscious

asleep

■

Intensity

: low intensity = barely to moderately perceptible or high intensity = present in moderate to great magnitude

■

Duration

: short duration < 1 min or long duration > 1 min

1 = Sad; frightened; frown2 = Facial grimacing

Body language

0 = Relaxed1 = Tense; distressed, pacing; fidgeting2 = Rigid; fists clenched; knees pulled up; pulling or pushing away; striking out

Consolability

0 = No need to console1 = Disracted or reassured by voice or touch 3 = Unable to console, distract, or reassure

Global assessment

14. Caregiver rating of resident’s pain level

Functional abilities

15. Independence in eating

16. Amount eaten17. Location of meal18. Time awake

in 24 hours19. Hours out of bed

while awake20. Hours interacting

with others 21. Cooperation

during personal care

22. Level of agitation23. Wandering, pacing

fidgeting 24. Indications of

wanting to leave facility

Comfort Checklist

Observed Pain Behavior Scale




Pain Assessment in the Dementing Elderly (PADE)

Table 1. Continued


Table 2. Pain Scale to Assess Advanced Dementia: Comparison of Reported Psychometric Properties

Measure Author/year Psychometric Properties

Comfort Checklist Volicer, L., Fabiszewski, K. J., Rheaume, Y. L., & Lasch, K. E. (1988).

Clinical management of Alzheimer’s disease

. Rockville, MD: Aspen Publishers Inc.

Descriptive scale; not designed for numeric rating.

Discomfort Scale for Dementia of the Alzheimer’s Type (DS-DAT)

Hurley, A. C., Volicer, B. J., Hanrahan, P. A., Houde, S., & Volicer, L. (1992). Assessment of discomfort in advanced Alzheimer patients.

Research in Nursing & Health, 15

(5), 369–377.

Scale development underwent three studies.

Study 1

: Content validity index (CVI) = 1.0; CVI probability was beyond .05

Study 2

: 9 items retained; internal consistency

α

= .77; test–retest

r

= .6,

p

< .001; paired

t

-test yielded

t

(67) = 0.74,

p

= .46 indicating no change in scores from baseline to retest in 1 hour

Study 3

: Cronbach’s

α

= .86 to .89 over 6 months

Inter-rater reliability

: conducted at 4 points and included 5 to 9 patients, resulted in

r

= .86, .89, .91 and .98;

Construct validity

: supported by mean baseline 7.7 to 11.9 at peak to 8.1 at resolution of intercurrent illness; repeated measures ANOVA

F

(1, 19) = 167.02,

p

< .001; 2 orthogonal contrasts support construct validity

Brief observational pain scale (No official name given)

Simons, W. & Malabar, R. (1995). Assessing pain in elderly patients who cannot respond verbally.

Journal of Advanced Nursing, 22

, 663–669.

No psychometric properties are reported.


Feldt, K. S. (2000). The checklist of nonverbal pain indicators (CNPI).

Pain Management Nursing, 1

(1), 13–21.


: simultaneous observation by two master’s prepared gerontological nurse practitioners and a subset of patients (

n

= 13); 93% agreement (

κ

= 0.625 to 0.819,

p

= .19 to .0057)

Internal consistency

: Kuder Richardson 20 (KR 20) at rest, alpha coefficient = .54 (confidence interval [CI] = .36 to .68); during movement alpha = .64 (95% CI = .49 to .75).

Criterion validity

: correlations between the CNPI and a 6-point verbal descriptor scale (VDS) for all 64 patients included:Rest: CNPI with VDS, Spearman correlation

r

s

= .372,

p

= .001;Movement: CNPI with VDS, Spearman

correlation

r

s

= .428,

p

= .0001



Correlations between CNPI and VDS for cognitively impaired patients (who were able to reply verbally) included:

Rest: CNPI with VDS,

r

s

= .299,

p

= .076;Movement: CNPI with VDS,

r

s

= .4629,

p

= .009Pain Assessment in Advanced

Dementia (PAINAD)Warden, V., Hurley, A. C., &

Volicer, B. J. (2003). Development and psychometric evaluation of the PAINAD.

Journal of Medical Administration

.


: described as “adequate”; specifics not reported

Internal consistency

: two raters for each of three different conditions (below) using Cronbach’s

α

:

Observation 1

: rated during rest or no activity Mean score for 19 patients = 1.3

±

1.3 Cronbach’s

α

= .57

Observation 2

: rated during pleasant activity Mean score for 19 patients = 1.0

± 1.3 Cronbach’s α = .59, .63

Observation 3: rated during unpleasant activity Mean score for 19 patients = 3.1 ± 1.7 Cronbach’s α = .50, .67 ANOVA for 3 conditions F(1, 17) = 10.93, p < .001

Construct validity: Chart audit data for 25 patients; Prior to medication: mean = 6.7 ± 1.8; After medication: mean = 1.8 ± 2.2; t(24) = 9.6, p < .001

DS-DAT and DS-VAS: r = .81, p < .001PAINAD and Pain VAS: r = .75, p < .001PAINAD and DS-DAT: r = .56, p < .016DS-VAS and Pain VAS: r = .85, p < .001

Pain Assessment for the Dementing Elderly (PADE)

Villanueva, M. R., Smith, T. L., Erickson, J. S., Lee, A. C., & Singer, C. M. (2003). Pain assessment for the dementing elderly (PADE): Reliability and validity of a new measure. Journal of the American Medical Directors Association, 4(1), 1–8.

Reliability (n = 24 residents)Inter-rater: 2 raters over 10 days for a total

of 784 observations; Intraclass correlation coefficients (ICC) were high; Part I ICC = 0.93, Part II = .81, Part III −.96

Internal consistency: Cronbach’s α for Part I and III were .77 and .63 respectively

Test–retest: Part I ICC = .70, Part II ICC = .34, Part III ICC = .89, Validity (n = 40 residents)

Construct validity: Part I and verbal agitation scale: r = 0.29, p < .01 Part II and physically, verbally, and nonphysically agitated subscales: r = 0.396, 0.398, and 0.421 respectively, all p < .01


Table 2. Continued


Criterion validity: Significant painful conditions rated by chart review: 10 positive compared to 30 negative; no statistically significant differences in PADE or agitation scale scores. Significant painful conditions as judged by nurse: 8 positive compared to 32 negative; statistically significantly higher scores in the pain group on verbal agitation (z = −2/83, p < .011), Part I (z = −3.44, p < .01), Part II (z = −4.30, p < .01) and Part III (z = −2.31, p < .01)

Psychoactive medication use: number of subjects in each group not reported; those on psychoactive medications had stasticially significantly higher scores on physical agitation subscale (z = −3.34, p = .01) verbal agitation subscale (z = −1.95, p = .05) and Part III (z = −3.25, p < .01).

Proxy Pain Questionnaire (PPQ)

Fisher, S. E., Burgio, L. D., Thorn, B. E., Allen-Burge, R. A., Gerstle, J., Roth, D. L., & Scott, J. A. (2002). Pain assessment and management in cognitively impaired nursing home residents: Association of certified nursing assistant pain report, minimum data set pain report, and analgesic medication use. Journal of the American Geriatrics Society, 50(1), 152–156.

Test–retest reliability: All three items were significantly and highly correlated with each other at the two time points (presence of pain, r = .84, p = .0007; frequency of pain, r = .87, p = .0003; intensity of pain, r = .84, p = .0006).

Construct validity: PPQ scores were also significantly related to amount of pain medication used by residents during that time (presence of pain, r = .37, p = .0075; frequency of pain, r = .55, p = .0001; intensity of pain, r = .41, p = .0022)

Assessment for Discomfort in Dementia (ADD) Protocol

Kovach, C. R., Weissman, D. E., Griffie, J., Matson, S., & Muchka, S. (1999). Assessment and treatment of discomfort for people with late-stage dementia. Journal of Pain & Symptom Management, 18(6), 412–419.

Inter-rater reliability: calculated as percentage of agreement between two nurses assessing four residents, was 86% for the total tool. Inter-rater reliability was 100% for medication use, 76% for nonpharmacological interventions and 87% for behavioral assessment of symptoms.


Table 2. Continued

usual behavioral patterns of the person” (p. 370). Referto Table 1 to review the nine behavioral indicators ofdiscomfort included on this scale.

Three underlying assumptions grounded tool devel-opment. First, discomfort can be observed although

it may not be verbally expressed by patients withadvanced dementia of the Alzheimer’s type (DAT).Second, patients with DAT cannot verbally control theirexpressions or demeanor; thus, observed behaviorscan be considered external markers of internal states.



Finally, states of normal development are reversed inDAT. As a result, indicators of discomfort would besimilar to those in infants and children.

Three separate studies were conducted in VeteransAdministration facilities to develop and test theDiscomfort Scale. Refer to Table 2, “Comparison ofPsychometric Properties,” for additional detail relatingto content validity, internal consistency, inter-raterreliability, and construct validity. Psychometric evalu-ation of the Discomfort Scale demonstrated that ithad the required properties of a new scale. As notedby the authors, external validity was limited becausethe scale was tested exclusively with men and thusadditional studies that include women were needed.Likewise, questions remained about the timing andduration of discomfort assessments, particularlyduring aversive care procedures, and the sensitivity ofthe tool to changes-related interventions designed toreduce discomfort.

In the years since its publication, practical concernsabout the DS-DAT have emerged, including the com-plexity of the scoring schema, associated difficultiesachieving inter-rater reliability in clinical settings, andthe requirement of 5 min of nursing time to rate thescale (Bachino, Snow, Kunik, Cody, & Wristers, 2001;Hooker, Barrick, Mitchell, & Sloane, 1997; Krulewitchet al., 2000; Miller, Neelon, Dalton et al., 1996). In spiteof these difficulties, it remains the gold standard bywhich nearly all additional observational pain assess-ment tools are evaluated by their developers. Ofperhaps most importance, conceptual grounding of theDS-DAT laid the foundation for others to build upon,including the later development of the Pain Assessmentin Advanced Dementia or PAINAD (described later).

Observable Pain Behaviors Scale

A third pain scale developed and pilot tested for usewith nonverbal elderly patients targeted individualswith dementia and others. The research hypothesis wasthat “the phenomenon of pain in the elderly patient whocannot communicate verbally can be systematically

assessed and effectiveness of interventions to relievepain [can be] evaluated” (Simons & Malabar, 1995,p. 665). Although the investigators reviewed theDS-DAT for possible use in their study, the scale wasrejected because the definition of discomfort could notbe considered to mean pain alone. However, neither aconceptual or operational definition of pain amongnonverbal patients was provided. The investigatorschose to develop their own rating system using an“amalgam of pain behaviors” adopted from an obser-vation method for chronic low back pain (Keefe &Block, 1982).

The Observable Pain Behaviors Scale includes sevendomains including verbal responses, facial expression,body language, physiological change, behavioral change,and conscious state. Each domain is rated by selectingthe verbal description that best fit the patient’s presen-tation. The number of verbal descriptions per domainranges from three to eight and are not mutuallyexclusive categories. Refer to Table 1 to review specificdescriptions. No information about reliability or validityis provided. Likewise, the adaptation of items from theoriginal scale is not described. As a result, a number ofsteps are needed to establish the validity and reliabilityof this scale prior to further use. Of note, the outcomesof this study are often reported in the literature(Bachino et al., 2001; Cook, Niven, & Downs, 1999; Feldt,2000; Huffman & Kunik, 2000) despite the lack ofdocumentation about tool’s psychometric properties.


The Checklist of Nonverbal Pain Indicators (CNPI)offers a brief, easy-to-use assessment method fordetermining pain in cognitively impaired older adults.Instrument testing was conducted with elderly hipfracture patients (Feldt, 2000), including both cogni-tively impaired (n = 53) and cognitively intact (n = 35)patients. The CNPI is composed of six items that arerated as present or absent. Refer to Table 1 to reviewitems included. Checklist items were adapted from theUniversity of Alabama Birmingham Pain Behavior


Scale, a 10-item scale was developed for use inrehabilitative medicine that is rated on three-pointscale (Richards, Nepomuceno, Riles, & Suer, 1982).

Feldt (2002) reported that the CNPI has good facevalidity, and established inter-rater reliability forperiods of rest and movement. The CNPI was alsocompared to a six-point verbal description scale (VDS)using a subsample of patients who were able to ratetheir pain verbally. Correlations between the VDSand CNPI at rest and during movement, both forcognitively intact and impaired patients, are detailedin Table 2.

The CNPI is both brief and easy to use, making it anattractive alternative in clinical practice. However, useof dichotomous scoring reduces the scale’s sensitivityto possible changes in pain. Likewise, reevaluation ofitem validity is warranted based on the failure of someitems to detect pain either at rest or during movement.In specific, only two items performed well in detectingpain among cognitively impaired patient during rest,including grimacing (31%) and restlessness (21%) withthe remaining four items being observed less than 12%of the time. The CNPI’s low probability of detectingbaseline pain (at rest) may reduce the likelihood thatpain treatment will be initiated and may easily con-tribute to acute exacerbations of pain on movement.Additional studies are needed to examine item validityand further evaluate use of the CNPI, particularly withnonverbal populations.


A recently published pain assessment scale extendsearlier work with the Comfort Checklist and DiscomfortScale. The Pain Assessment in Advanced Dementia(PAINAD) was developed as a brief, easy-to-administermeasure of pain in nonverbal individuals that, by design,provides an overall score and is sufficiently sensitiveto detect changes in pain (Warden et al., 2003).

Pain in persons with advanced dementia wasdefined as a multifactorial symptom expressed byseveral signs but forming a single construct. Items for

the PAINAD were generated through literature reviewand consultation with experts in the field, and build-ing on both earlier research with the DS-DAT and theFaces, Legs, Activity, Cry, Consolability Scale usedwith children (Merkel, Shayevitz, Voepel-Lewis, &Malviya, 1997). Five items include breathing, negativevocalization, facial expression, body language, andconsolability. Each item is rated on a three-point scalefrom 0 to 2 with specific descriptions provided foreach level of discomfort.

Psychometric properties of the PAINAD wereevaluated in a two-phase study that involved directobservation and retrospective chart audits. Directobservation involved rating by two trained raterswho assessed patients under three conditions usingcombinations of the PAINAD, two visual analog scales(the Pain VAS and Discomfort VAS), and the DS-DAT.Retrospective chart audits of pain assessment using thePAINAD supported the tool’s sensitivity to changes inpain. See Table 2 for specific information.

The PAINAD shows promise as a brief, easily admin-istered and yet sensitive measure of pain amongnonverbal patients with advanced dementia. As theinvestigators acknowledged, additional studies relatedto the tool’s use in other settings, at different times ofday, and using a more diverse population of subjects,including women and racial/ethnic minorities, areneeded to further establish its psychometric propertiesand value in clinical practice. In addition, use of patientvideotapes to establish inter-rater reliability may notbe easily replicated elsewhere.

Pain Assessment for the Dementing Elderly (PADE)

The Pain Assessment for the Dementing Elderly(PADE) consists of 24 items that are divided into threesections, including physical signs, global assessment,and functional activities (Villanueva, Smith, Erickson,Lee & Singer, 2003). Items were developed on the basisof literature review, interviews with nursing staff inlong-term care facilities, and naturalistic observationof patients in a dementia unit. Fifteen items are scored



from 1 to 4 using description to anchor item scoring(e.g., none to extreme; calm to extremely restless). Theremaining nine items offer four categorical choices thatare also scored from 1 to 4 in response to a question.Throughout the scale, lower scores are associated withmore functional behavior and higher scores are associ-ated with dysfuctional or distressed behaviors. Contentof items is similar to those in other scales but is framedin the form of questions (e.g., “Does the patient have asad facial expression?”; “During transfers, does thepatient grimace, brace him- or herself, groan, etc.?”).

Reliability and validity were addressed in twostudies that included a total of 65 older adults livingin residential and skilled care facilities. Ratings weremade by caregivers (e.g., most were nursing assistants)after training and under the supervision of a nurse.Rating required 5 to 10 min to complete. Reliabilitymeasures included inter-rater reliability, internalconsistency and test–retest. Refer to Table 2 forpsychometric properties. Validity measures includedcomparison of the PADE to a verbal agitation scale todetermine construct validity and various comparisonsof patients who experienced pain, had painful condi-tions, and exhibited agitation to establish criterionvalidity. The authors conclude that the PADE demon-strates good reliability and validity.

Limitations noted by Villanueva and colleaguesinclude the relatively small number of subjects in thestudy overall, limited minority representation in thesample, and lack of a comfort intervention to deter-mine if the PADE can detect changes in pain status.Other potential limitations include lack of a cutoffscore, and the extended amount of time needed (up to10 min of observation), to rate pain. Although theauthors believed that use of regular caregivers was astrength of this study, questions remain about theextent to which prior knowledge of the patient’sbehavior may have facilitated use of the scale. Asdescribed in the next sections, those who know thepatient well often are able to detect subtle changesin behavior that may be oblivious to another (e.g., staffof inpatient care settings).

Proxy Pain Questionnaire (PPQ)

The Proxy Pain Questionnaire (PPQ) is one of twomethods described here that specifically rely on thereport of a caregiver who knows the patient well. ThePPQ was developed as part of a larger study thatexamined the relationship between Minimum Data Set(MDS) pain scores and nursing assistant assessmentsof pain (Fisher et al., 2002). The PPQ asks three questionsabout the presence (i.e., “Within the last week has theresident experienced pain?”), frequency (i.e., “Howoften does the resident experience pain?”), and inten-sity (i.e., “When this resident has pain, how wouldyou describe the extent of the pain?”). The first item(presence) is answered yes/no and the remainingitems are rated on a 13-point horizontal Likert-typescale that is anchored with verbal descriptors (i.e.,never, occasionally, moderately often, often, andalways for frequency; mild, moderate, and severefor intensity).

Preliminary findings support the value of the PPQas a proxy rating method. Test–retest reliability wassignificantly and highly correlated for all three items.Refer to Table 2 for additional detail. The PPQ scoreswere deemed a more sensitive measure of pain thanthe MDS based on its higher correlation with analgesicmedication use compared to the MDS. Likewise, theMDS identified pain in only 20% of the sampleeven though 46% were receiving analgesic medica-tion. In contrast, the PPQ identified pain in 48% ofthe sample.

Assessment of Discomfort in Dementia (ADD)

Another promising approach in pain assessment isthe Assessment of Discomfort in Dementia (ADD)protocol (Kovach et al., 2001; Kovach, Noonan, Griffie,Muchka, & Weissman, 2002). The ADD protocol wasdeveloped for use with persons who have moderateto severe dementia who are unable to clearly andconsistently report on their internal states (Kovachet al., 2001). Based on the assumption that behaviors


associated with dementia are symptoms of unmetneeds (Kovach et al., 2002), the protocol providesstepwise recommendations that combine assessmentand intervention strategies. In the ADD protocol, painis defined as an “unpleasant internal state that resultsfrom physiologic stimuli” while affective discomfort is“an unpleasant internal state that results from non-physiologic stimuli” and discomfort is an “unpleasantphysical or affective internal state that results fromeither physiologic or nonphysiologic stimuli” (Kovachet al., 2002, p. 17).

Behavioral symptoms are believed to be caused byeither affective or physical causes which are simulta-neously assessed in the protocol. Changes in facialexpression, mood, body language, voice, and behaviorare used as triggers to initiate use of the protocol whenbasic needs interventions have failed to providecomfort. The protocol is structured in five steps thatinclude (a) physical assessment, (b) review of historyfor potentially painful conditions and use of interven-tions related to the physical assessment findings,(c) affective assessment and implementation ofnonpharmacologic comfort measures, (d) use of aprescribed, as needed nonopioid analgesic if behaviorspersist, and (e) consultation with the physician orother health provider if behaviors persist, or use ofa prescribed, as needed psychotropic drug (Kovachet al., 2002).

Limited information about the psychometricproperties of ADD is currently available. Refer toTable 2 for additional detail. Although protocol isnot focused on measurement of pain or discomfort,preliminary findings suggest that the method iseffective in reducing potentially pain-relatedbehavioral symptoms in dementia, and promotes useof both nonpharmacological comfort measures andpharmacological interventions, primarily use ofanalgesics (Kovach et al., 1999, 2001). Althoughadditional testing is indicated with both the PPQand ADD protocol, each shows promise as means tomore accurately identify pain among nonverbal olderadults with advanced dementia.

Discussion and Conclusions

The tools reviewed here each contribute to the slowlyexpanding arena of pain instrumentation for the mostimpaired individuals with dementia—those who havelost their ability to process experiences and communicatethem verbally to others. The profound disabilityexperienced by those in end-state dementia makes painassessment difficult at best. Lacking the ability to dif-ferentiate between various sensations and needs, thesame type of behavior that signals the need to toilet mayemerge when a person experiences discrete physicalpain. Each is experienced as form of stress that mayerupt in behavioral symptoms (Hall & Buckwalter, 1987;Kovach, Griffie, Muchka, Noonan, & Weissman, 2000).

Although this review focused primarily on toolsthat may be used by caregivers who do not know theusual habits and patterns of the patient, qualitativeresearch clearly supports the fact that knowing theperson is extremely important in the detection of painamong those with dementia (Marzinski, 1991; Parke,1998). Various studies exploring nurses’ perceptions ofpain among their nonverbal elderly patients reportthat diverse behavioral symptoms are used as a basis forinitiating a pain intervention (Blomqvist & Hallberg,2001; Cohen-Mansfield & Creedon, 2002; Kovach et al.,2000; Parke, 1998). Atypical and seemingly paradoxicalbehaviors may represent pain in specific patients asdescribed by Marzinski (1991) who reported that paincaused one patient who normally moaned and rockedto become quiet and withdrawn, while in another,blinking rapidly signaled nurses of pain. Parke (1998)concluded that nurses recognize pain by knowing theindividual with pain, and by having many relationshipsand experiences with cognitively impaired patientsthat leads to “intuitive perception” or knowing bydiversity. Of importance, the ability to accuratelyrecognize changes in behaviors that may signal painextends to nursing assistants (Fisher et al., 2002; Horgas& Dunn, 2001; Parke, 1998) who provide most of theday-to-day care in long-term care facilities, homehealth, and other settings.



Clearly, the need for assessment methods thataccurately identify pain in older adults with advanceddementia who are nonverbal will only increase in thefuture. As the number of older adults increases overthe next five decades as the baby boomers age, so willthe number of individuals who experience dementiaand survive into the terminal stages. “Intuitive” assess-ment methods, including use of proxy measures andnursing care protocols that rely on knowing the personwell may be useful in identifying pain that wouldotherwise be undetected. In an ideal situation, careproviders would know the care recipients’ personalhabits and history. However, in light of early andrapid discharge from acute care settings and staff turn-over rates in nursing facility care, this ideal may neverbe realized. Thus, pain assessment measures that maybe used by a person who does not know the usualhabits, patterns, and baseline behaviors of the patientare needed to better assure that treatable discomfort isrelieved in this complex patient population.

Each method described here has merit in a givencontext of care, and each has limitations. Nurseclinicians and other healthcare providers must applymethods thoughtfully, considering the goals of painassessment, the relative complexity of the measure inrelation to potential day-to-day users, and environ-mental factors that may facilitate or deter use in “realtime.” Finally, additional structured trials to furthertest the use of these, or other, methods are neededto assure that reliable and valid measures that aresufficiently sensitive to detect pain, and pain relief,among nonverbal patients with dementia are availablefor use in day-to-day care settings.

Author contact: [email protected], with a copy to theEditor: [email protected]

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Pain Assessment in Nonverbal Older Adults with Advanced Dementia