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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
J Am Geriatr Soc. Author manuscript; available in PMC Jul 20, 2009.
Published in final edited form as:
PMCID: PMC2712941
NIHMSID: NIHMS102387

Pain Assessment in Persons with Dementia: Relationship between Self-report and Behavioral Observation

Ann L. Horgas, RN PhD,1 Amanda F. Elliott, ARNP PhD,2 and Michael Marsiske, PhD3

Abstract

OBJECTIVES

To investigate the relationship between self-report and behavioral indicators of pain in cognitively impaired and intact older adults.

DESIGN

Quasi-experimental, correlational study of older adults.

SETTING

Data were collected from residents of nursing homes, assisted living, and retirement apartments in North/Central Florida.

PARTICIPANTS

126 adults, mean age 83 years; 92 cognitively intact, 24 cognitively impaired.

MEASUREMENTS

Pain interviews (pain presence, intensity, locations, duration), pain behavior measure, MMSE, analgesic medications, and demographic characteristics. Participants completed an activity-based protocol to exacerbate pain.

RESULTS

86% self-reported regular pain. Controlling for analgesics, cognitively impaired participants reported less pain after movement, but not at rest. Behavioral pain indicators did not differ between cognitively intact and impaired elders. Total number of pain behaviors was significantly related to self-reported pain intensity (Beta = .40, p = .000) in intact elders.

CONCLUSION

Self-reported pain is diminished in cognitively impaired elders relative to intact elders, independent of analgesics, but only when assessed following movement. Behavioral pain indicators do not differ between groups. The relationship between self-report and pain behaviors supports the validity of behavioral assessments in this population. Findings support multidimensional pain assessment in persons with dementia.

Keywords: pain, dementia, measurement

INTRODUCTION

Pain, a persistent daily problem for many elderly adults, is associated with physical and social disability, depression, and reduced quality of life.1 Between 50% and 86% of older adults experience pain; among those with dementia, 32–53% experience it daily.2 The high prevalence is associated with proliferation of pain-related health conditions in late life, such as osteoarthritis, hip fractures, peripheral vascular disease, and cancer.3

Dementia complicates pain assessment because it impairs memory, judgment, and verbal communication. Dementia is associated with central nervous system changes that alter pain tolerance4 but not pain thresholds (e.g., minimum level at which a painful stimulus is recognized as pain).5 No empirical evidence indicates that persons with dementia physiologically experience less pain; rather, they appear less able to recognize and verbally communicate presence of pain.6 This conclusion is supported by findings that cognitively impaired older adults underreport pain relative to non-impaired elders7 and are less likely to be treated for pain relative to cognitively intact peers,8,9 which reflects difficulty assessing pain in this population.

Self-report is considered the “gold standard” of pain assessment. Despite recent studies supporting reliability and validity of self-report in persons with dementia,7,10 health care providers and pain experts recognize that self-report, alone, is insufficient for this population and that observational pain assessment strategies are needed. In 2002, the American Geriatrics Society established comprehensive guidelines for assessing behavioral indicators of pain. 1 More recently, the American Society for Pain Management Nursing Task Force on Pain Assessment in the Nonverbal Patient (including persons with dementia) recommended a comprehensive, hierarchical approach that integrates self-report and observations of pain behaviors.11

Recently, tools to measure pain in persons with dementia have proliferated. In 2006, Herr et al. completed a comprehensive state-of-the-science review of 14 observational pain measures. The authors concluded that existing tools are still in early stages of development and testing, and that more psychometric work is needed before tools are recommended for broad adoption in clinical practice.12 These conclusions are corroborated by others,13 including an interdisciplinary expert consensus panel on pain assessment in older persons.14 In particular, these authors highlight the need for more evaluation of observational pain measures, including validation against the gold-standard of self-report in intact and impaired populations. Almost all research on measuring pain in persons with dementia has focused exclusively on persons with moderate to severe disease. To date, there is only one published study that compared pain behaviors and self-reported pain in persons with and without cognitive impairment, but it focused on post-operative patients undergoing rehabilitation and acute pain associated with physical therapy.15

Thus, the purpose of this study was to investigate the relationship between self-report and behavioral indicators of pain in cognitively intact and impaired older adults with persistent pain. Specifically, we evaluated whether cognitive status (intact or impaired) differentially influenced verbal and non-verbal expression of pain. We hypothesized that self-reported pain would be diminished in cognitively impaired elders relative to those cognitively intact, but that pain behaviors, because they are more reflexive and less reliant on verbal communication, would be equivalent in both groups. We also evaluated the relationship between pain behaviors and self-reported pain in cognitively intact elders to validate that behaviors measured are indicators of pain. We asked the following research questions:

  1. Does cognitive status influence self-reported pain?
  2. Does cognitive status influence observed pain behaviors?
  3. Are self-reported pain and observed pain behaviors related, and is the relationship different in cognitively intact and impaired elders?

METHODS

This study was approved by the University of Florida Institutional Review Board. Informed consent was obtained from cognitively intact participants and from impaired elders’ legally authorized representative, with assent from persons with dementia.

Design

A quasi-experimental, correlational design was used to investigate pain in older adults with mild to moderate dementia, because dementia status cannot be experimentally manipulated. Cognitively intact elders functioned as a comparison group to examine behavioral indicators and self-reported pain in the two groups. If self-report and behaviors were related in cognitively intact persons, we would have some basis to infer that the same behaviors indicated pain in cognitively impaired elders.

Participants

A total of 158 older adults were screened for enrollment from 17 assisted living facilities, nursing homes, and retirement communities in North Central Florida. Inclusion criteria were as follows: 65 years or older, English-speaking, ability to stand up from a chair and walk in place, diagnosed osteoarthritis in the lower body, and adequate vision/hearing to complete the interview.

A total of 140 participants were enrolled and completed the baseline interview; 126 (90%) completed the protocol. Attrition analyses revealed no significant differences between completers and non-completers on demographic, residential status, health, or pain variables. The final sample was predominantly female (81%), Caucasian (97%) and widowed (60%), with a mean age of 83 years (Range = 65 – 98 years). Thirty-nine percent resided in nursing homes, 39% in assisted living, and 22 % lived independently in retirement apartments. Participants’ average MMSE raw score was 24 (Range = 7 – 30; Median = 27; Mode = 29). Based on 10th percentile education-adjusted MMSE norms as the cutoff,16,17 64 (50.8%) were cognitively intact and 62 (49.2%) were impaired. See Table 1 for description of total sample and cognitively intact and impaired subsamples. Groups differed only in residential status (cognitively impaired elders were significantly more likely to reside in assisted living or nursing home facilities).

Table 1
Sample Characteristics, Overall (N = 126) and by Cognitive Status

Procedures

Participants completed a brief screening interview to confirm study eligibility and to ascertain cognitive status. Those eligible were interviewed about their pain and completed an activity-based protocol designed to evoke pain behaviors in persons with persistent pain (described in more detail below).

Activity Protocol

Participants were asked to sit, stand, lie on a bed, walk in place, and transfer between activities. Based on the work of Keefe and colleagues, the activity protocol had several strengths for use with this population: (1) it simulates performance of basic activities of daily living, thereby enhancing ecological validity of the tasks, (2) it was tested in other studies and activities were shown to induce pain in persons with osteoarthritis and chronic low back pain, thus providing a naturalistic pain induction method, and (3) use of these real-world tasks avoids undue health or safety risks for elderly adults and eliminates potential bias associated with artificially induced (e.g., lab-based) pain induction techniques.18,19 We simplified the protocol by using only one-minute activity intervals (to reduce complexity of directions and physical demands for frail and/or cognitively impaired participants) and substituted walking-in-place (to accommodate physical space limitations in residential care facilities where data were collected). Activities were conducted in random order to minimize order effects, and the entire 10-minute protocol was videotaped.

Measures

Self-Reported Pain

The PI or a trained research assistant interviewed each participant in private session about their pain experience. Pain presence, intensity, locations, and duration were assessed.

Pain Presence

Questions from the Structured Pain Interview (SPI)20 were used to assess presence of self-reported pain. During the pain screening interview, participants were asked “Do you have some pain every day or almost every day (daily pain)?” Pain was also assessed immediately prior to the start of the activity protocol [“Are you having any pain right now?” (pre-activity)] and immediately after it [“Did you experience any pain during these activities?” (post-activity)]. Response choices to all three questions were yes (1) or no (0).

Pain Intensity

If participants responded ‘yes’ to experiencing pain (daily, pre-activity, or post-activity), they were asked to rate the intensity using a Numerical Rating Scale (NRS). The NRS was presented as a horizontal line with 0= no pain and 10= worst pain as anchors, and equally spaced dashes representing pain intensity rating of numbers 1–9. The scale was printed in large, bold font on an 8.5 × 11 paper to facilitate use with older adults who may have vision difficulties. Among elderly adults, the NRS is considered valid, reliable and easier to use than the traditional visual analogue scale.21

Pain Duration

Participants were asked to indicate how long (in months and years) they had experienced daily or almost daily pain. Responses were coded into < 1 year, 1–5 years, 6–10 years, 11–15 years, or more than 15 years.

Pain Locations

The pain map from the McGill Pain Questionnaire22 was used to assess pain locations. Participants indicated areas on the body drawing in which they were currently experiencing pain. Total number of painful locations was summed. This widely used measure has been validated in several epidemiologic studies and has high inter-rater reliability (average Kappa = 0.92).23

Observed Pain Behaviors

Pain Behaviors

A modified version of the Pain Behavior Measure18 was used to measure behavioral indicators of pain. Based on standardized behavioral definitions, occurrence of the following specific pain behaviors was evaluated: rigidity, guarding, bracing, stopping the activity, rubbing, shifting, grimacing, sighing/non-verbal vocalization, and verbal complaint. Standardized definitions were adapted from the work of Keefe and colleagues,18,19 modified for use in this older, more impaired population, and pilot tested in a sample of nursing home residents with dementia.24 This measure has adequate reliability and validity.13

Pain Behavior Coding

Independent raters, all registered nurses blind to participants’ cognitive status, scored the videotaped activity protocols. Coders completed extensive training in coding procedures until intra-rater and inter-rater agreement [with the master coder (PI) and another rater] reached a Kappa Coefficient of ≥ .80, indicating good to very good reliability.25 After coding reliability was attained, reliability checks were conducted on 10% of all videotapes to minimize rater drift.

Noldus Observer software was used to analyze digitized videotapes and code pain behaviors. The following summary variables were created and used in the analyses: (1) total number of pain behaviors observed, (2) number of times each behavior (e.g., rigidity, guarding, bracing, stopping, rubbing, shifting, grimacing, sighing/non-verbal vocalization, and verbal complaint) was observed, and (3) total numbers of pain behaviors observed during each activity state (e.g., # of behaviors while walking, reclining, sitting, standing, and transferring).

Cognitive status

Cognitive status was assessed using the Mini Mental State Exam (MMSE), 26 an 11-item screening instrument widely used to assess general cognitive status in elderly adults. The following MMSE scores served as the cutoff to classify participants as intact or impaired: < 8th grade education = 20, 9–11 years = 24, high school graduate or equivalent = 25, some college = 27, and college degree or higher = 27.16,17

Analgesic Medications

Drug data for each participant was coded according to the American Hospital Formulary Service (AHFS) system. All pain medications were identified and converted to acetaminophen-equivalents. 8,27 This standardized drugs and dosages to a common metric and facilitated comparison of analgesic dosing. To ensure that only analgesics actually taken would be controlled for, equianalgesic dosages were considered in these analyses only if they were taken within the standard therapeutic dosing window for each drug (e.g., acetaminophen, q 4–6 hours) prior to the activity protocol.

Data Analysis

Statistical Package for Social Sciences (SPSS®, version 15.0; SPSS, 2007) was used for data analysis. Descriptive statistics, Pearson χ2, and t-tests were used to describe sample characteristics and examine group differences. ANCOVA was used to test relationships between cognitive status, pain intensity, and pain behaviors. Logistic regression was used to predict pain presence. Multiple regression was used to predict pain intensity and number of pain behaviors, with a centered cognitive status × pain intensity interaction term to identify group differences; standardized regression coefficients (Beta) are reported in the results.

RESULTS

Self-reported Pain

The majority of participants (86.5%) reported experiencing pain “every day or almost every day.” More than 65% reported experiencing pain for more than 1 year (about 40% indicated duration of > 5 years). On average, participants reported pain in 4 body locations (Range = 1–25); usual pain intensity was 4.3 (moderate) on a 0–10 scale.

Immediately prior to the activity protocol, 45 (35.7%) of participants reported experiencing pain. Mean pain intensity was rated as a 1.7 (Range = 0–9). After the protocol, 79 (62.7%) reported experiencing pain during the activities; mean pain intensity was 3.2 (Range = 0–9).

Relationship Between Cognitive Status and Self-Reported Pain

Chi square analyses were conducted to examine the relationship between cognitive status (impaired vs. intact) and presence of self-rated daily pain and pain duration at baseline. The baseline pain interview was not always conducted on the same day as the activity protocol, and we did not assess analgesic use prior to the interview. Thus, initial analyses are descriptive only and do not control for analgesic use. At baseline, 77.4% of impaired and 95.3% of intact participants reported experiencing pain every day [χ2 (1) = 8.6, p = .003]. Cognitively impaired elders also recalled shorter pain duration [χ2 (3) = 16.0, p = .001] than intact participants, but no significant differences were reported in the number of pain locations.

Logistic regression, controlling for acetaminophen-equivalents, indicated that cognitive status was not significantly predictive of pre-activity pain presence. Regression analyses, with pre-activity pain intensity as the dependent variable and cognitive status and analgesics as predictors, revealed no significant difference between the two groups (Figure 1).

Figure 1
Relationship between, Self-report and Observed Pain Behaviors between Cognitively Intact and Impaired Elders (N=126)

At the end of the activity protocol, cognitive status was significantly associated with the reported presence of pain, controlling for analgesics [Beta = 1.2, p = .002]; cognitively impaired elders were less likely to report pain. Impaired participants also reported significantly less intense pain than intact participants after the activity protocol [3.8 vs. 2.6; F (1) = −5.0, p = .03]. Paired t-tests indicated that pain intensity increased significantly from start to end of the protocol for both groups (Figure 1).

Relationship Between Cognitive Status and Observed Pain Behaviors

On average, 21.5 pain behaviors per person (Range = 3 – 50, Median = 21, Mode = 16) were observed during the activity protocol. ANCOVA models, controlling for analgesics, revealed no significant differences in mean number of pain behaviors observed between cognitively intact and impaired participants (covariate adjusted means = 21.8 and 21.3, respectively) [F (1) = .08, p = .77].

The number of occurrences of each of the eight behavioral indicators observed was summed. ANCOVA models, controlling for analgesics and using Bonferroni correction for multiple comparisons (p-value set to .005), revealed no significant differences between cognitively intact and impaired elders for any behavioral pain indicators investigated (Figure 1).

Of the activity states observed during the protocol, transferring elicited the most frequent pain behaviors (Mean = 13.4; Range = 2–43). No significant differences were noted between cognitively intact and impaired participants in number of behaviors observed during any of the five observed activity states.

Relationship Between Self-Reported Pain and Observed Pain Behaviors

Regression analyses were conducted to examine the relationship between self-reported pain intensity and total number of pain behaviors observed, controlling for analgesics. Prior to the activity protocol, pain intensity was significantly predictive of the pain behaviors sum score (Beta = .27, p = .002), but the relationship did not differ between cognitively intact and impaired participants. After the activity protocol, self-reported pain intensity was significantly (and more strongly) related to number of pain behaviors observed (Beta = .40, p = .000), and the pain by cognitive status interaction was significant (Beta = .22, p = .008). Thus, post-activity pain intensity and summed behavioral indicators were significantly related among intact but not impaired participants (Table 2).

Table 2
Relationship between Self-Reported Pain Intensity and Observed Pain Behaviors (N=126)

DISCUSSION

We found that cognitive impairment diminishes self-reported pain assessed at rest, but only when analgesics are not controlled. At baseline, cognitively impaired elders were significantly less likely to report pain, consistent with reports in the literature.7 When analgesics were controlled, however, these differences disappeared. This finding highlights the need to control for analgesics taken when making group comparisons which, to the best of our knowledge, has not been previously done. The few studies reporting medication use include drugs prescribed or number of doses taken (regardless of medication class), whereas our study identified analgesics “on board” during the pain assessment protocol.

After the activity-based protocol was completed, self-reported pain intensity increased for both groups, but cognitively impaired elders reported less intense pain than their intact peers. This finding supports usefulness of the protocol to exacerbate pain in those with painful conditions and highlights the importance of mobility-based pain assessments.12,14 This finding held even when the amount of analgesics taken by participants was controlled.

Behavioral indicators of pain observed during activities were equivalent across both groups. This finding contradicts the work of Hadjistavropoulos and colleagues,15 and may reflect (a) that medication use was controlled for and (b) that our focus was on persistent pain, as opposed to more acute, post-operative pain. Our research confirms that reliance on self-report alone is insufficient to assess pain in older adults with dementia, as the pain experience may be underestimated,11 and supports growing recognition that behavioral observation is a necessary and useful pain measure, particularly among those with cognitive impairment.

It should be noted that cognitively impaired elders took significantly more pain medication than their intact peers. The difference equals about 500 acetaminophen-equivalents, approximately the dose of one extra-strength acetaminophen tablet. This finding, which contradicts our own prior work as well as findings reported by others,8,9 warrants further investigation. Post-hoc analyses indicated this difference was not attributable to residential status, number of medical conditions, or demographic characteristics. Thus, it may reflect recent changes in prescriptive practice as a result of heightened focus on pain in older adults with dementia.

Another important finding is the significant relationship between self-reported pain intensity and observed pain behaviors in cognitively intact persons. This finding provided support for the validity of behavioral pain indicators against the gold standard of self-report, as least in cognitively intact elders, and is consistent with other researchers’ findings.28 Because there is no evidence that cognitively impaired elders experience less pain, it is reasonable to infer that pain behaviors are a valid indicator of pain in persons with dementia. This assumption, however, cannot be directly tested unless biological tests are developed.12,24 Pain is subjective, and pain behaviors can be difficult to interpret, subject to bias, and lack specificity.14,29 It has been suggested that some behaviors may indicate anxiety or generalized distress, not pain, in those with advanced dementia.29,30 Thus, pain behavior measurements should be used in conjunction with self-report, not as a replacement, and in the context of a comprehensive pain assessment.14,30

Study strengths are that both cognitively intact and impaired elders participated, thereby facilitating comparison of assessment strategies in persons of differing cognitive abilities, we conducted a careful analysis of analgesics used during the pain assessment, and we focused on persistent pain. Most related prior research has included only persons with advanced dementia and post-operative pain. Our sample was limited, however, by being primarily Caucasian and by being restricted to individuals with mild to moderate dementia. This was likely due to inclusion criteria requiring that participants be able to rise, stand, and walk. Individuals with severe dementia are typically more immobilized and/or unable to follow directions, factors that would impair ability to complete the activity-based protocol in this study. Thus, generalizations are limited and further study is needed.

This study contributes several important findings to the discourse on pain assessment in persons with dementia. First, we confirmed that self-reported pain, while still attainable, may be diminished in those with mild to moderate dementia relative to intact elders, depending on when it is assessed. Second, assessment of pain during movement is supported. Both cognitively intact and impaired elders showed increased self-reported pain intensity after movement, indicating that static assessment may underestimate pain. Third, results support the validity of behavioral pain assessment against the gold standard of self-report, and provide evidence of an association between summed pain behaviors and self-reported pain intensity. More work is needed to establish scale properties of pain behaviors in relation to pain severity before this approach can be translated to clinical practice. Fourth, findings highlight the importance of carefully evaluating analgesics taken when measuring pain, since results cognitively intact and impaired elders with persistent pain are often medicated differently. This finding may reflect a change in prescriptive practice that warrants further investigation.

ACKNOWLEDGMENT

Sponsor’s Role: The National Institute of Nursing Research sponsored this study but had no role in the design, methods, subject recruitment, data collections, data analyses, or manuscript preparation.

FUNDING SOURCE:

This study was supported by grant R01 NR05069 from the National Institutes of Health/National Institute of Nursing Research (Dr. Horgas) and a John A. Hartford Foundation Building Academic Geriatric Nursing Capacity Pre-doctoral Scholarship (Dr. Elliott).

Footnotes

Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper.

All authors have approved the final version of this manuscript being submitted for publication.

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