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. Author manuscript; available in PMC: 2024 Sep 1.
Published in final edited form as: Geriatr Nurs. 2023 Aug 2;53:146–152. doi: 10.1016/j.gerinurse.2023.06.025

Caregiving Self-Efficacy and Pain Assessment by Family Caregivers of People Living with Dementia

Jeffrey T Boon a,b, Keela Herr c, Lori Schirle a,d, Mary S Dietrich a,d, Cathy A Maxwell a
PMCID: PMC10530151  NIHMSID: NIHMS1915414  PMID: 37540909

Abstract

Like other older adults, people living with dementia (PLWD) experience pain, and the task of pain assessment often falls to family caregivers. In this study, we surveyed family caregivers of PLWD to determine the frequency with which they use different elements of pain assessment. We also determined correlations of family caregivers’ characteristics (caregiving self-efficacy, relationship duration and type, mood, education level, and health literacy) with their use of the elements of pain assessment. Participants reported frequent use of many pain assessment elements. Statistically significant correlations were found between caregiving self-efficacy for obtaining respite and asking others about noticed behavior change (rho=.0.41, p=.007); and for responding to disruptive patient behaviors for multiple pain assessment elements including observing pain behaviors (rho=0.49, p<.001), asking others about noticed behavior change (rho=0.54, p<.001) and rechecking (rho=0.56, p<.001). Continued efforts are needed to describe pain assessments by family caregivers of PLWD.

Among older adults, people living with dementia (PLWD) represented an estimated 6.2 million Americans age 65 or older having Alzheimer’s type dementia in 2021 (not including other dementia types), and this number is expected to grow to 13.8 million by 2060. 1 A recent study estimates that the proportion of Americans age 65 or older with any dementia or mild cognitive impairment may be as high as one-third. 2. Pain is also a common problem among older adults with at least 78% of Medicare recipients experiencing chronic pain and 57% reporting that their chronic pain limits their lives. 3 While pain is present in PLWD just as in other older adults, dementia disease progression affects the ability to report pain or may alter the behaviors associated with pain. 4 As a result of these changes, the responsibility and burden of pain assessment of PLWD shifts increasingly to caregivers.

Care of PLWD is primarily provided by family caregivers who lack formal healthcare training. In the United States only 25.5% of community-dwelling PLWD receive any form of paid care and only 10.8% receive 10 or more hours of weekly paid care5, leaving individuals such as family caregivers to assume most caregiving activities. Despite assuming the bulk of caregiving responsibilities, family caregivers lack the same pain management training as paid caregivers such as physicians, nurses, therapists, and others in the healthcare system. If pain is to be optimally managed in community-dwelling PLWD, the first step—assessment—falls predominately to their family caregivers.

Family Caregivers’ Pain Assessments

Other studies reflect family caregivers’ difficulties with pain assessment of PLWD. 6 They may have doubts about the PLWD’s self-report (or lack thereof) of their pain. 7,8 In response to this doubt, family caregivers may rely on their observations of the PLWD’s behavior (e.g., body language or facial expressions) or changes in the PLWD’s physical condition (e.g., swelling) that might indicate the presence of pain. 7,9,10 Among studies that examined the use of pain assessment methods by family caregivers, a common theme from most studies is the importance of familiarity with the PLWD. 6,11 Personal familiarity with the PLWD is consistent with knowing the patient or having a deeper relationship that could strengthen the pain assessment progress. Despite this advantage, caregivers report difficulties with pain assessment, reflecting the need for work to develop interventions to support pain assessment approaches by family caregivers.

Much of the literature on pain assessment by family caregivers has been qualitative, thus, there remains a need to quantify pain assessment practices. Pain assessment by family caregivers may comprise a number of elements. A framework for pain assessment, the Hierarchy of Pain Assessment Techniques, identifies a number of elements that contribute to pain assessment and are relevant for those who cannot self-report. 12,13 The elements of pain assessment addressed in this study include: seeking causes of pain, seeking self-report of pain, observing pain behaviors, asking others if the PLWD appears to be in pain, asking others about behavior changes in the PLWD, using an analgesic trial, rechecking post-intervention for the presence of pain, and documentation of pain. This list was adapted from the American Society for Pain Management Nursing’s (ASPMN) 2019 Position Statement, “Pain in the Patient Unable to Self-Report”. 12

Characteristics of Family Caregivers

To better understand the use of different pain assessment elements, it was deemed useful to also describe characteristics of family caregivers of PLWD associated with more frequent use of the different pain assessment elements. Snow’s conceptual model of pain assessment for PWLD specifies pain as an unobservable but inferred perception, based on observable external signs that must be interpreted by a third-party rater (e.g., family caregiver). 14 This study examined characteristics of the third-party rater that could be associated with pain assessment.

Caregiving self-efficacy has been found to be important in other settings such as hospice and cancer family caregiving. 15-19 Caregiving self-efficacy refers to the beliefs a caregiver has about their ability to perform certain actions in the context of caregiving. 20 With higher caregiving self-efficacy, family caregivers are expected to have greater likelihood to initiate and persist in a caregiving task based on Bandura’s work. 20,21 Four components contribute to self-efficacy: mastery experiences, vicarious experiences, verbal persuasion, and the physiological and affective state of the person. 21 Mastery experiences consist of previous experiences of success or failure in a task while the vicarious experiences refer to information used for modeling the competencies of others. Verbal persuasion refers to input from credible individuals that supports a person’s belief in their own abilities. Physiological and affective arousal during a stressful circumstance (such as a caregiving task) informs the person’s appraisal of their performance and ability. Processed together, these sources form the family caregiver’s self-efficacy for certain tasks with mastery experiences often being weighted heavily in this formulation. 21 Thus, caregiving self-efficacy is a key variable in this study because it could provide an important framework for future interventions. For example, higher self-efficacy for family caregivers managing pain in cancer patients nearing the end of life has been associated with the patients reporting better quality of life. 17 In pain assessment for PLWD, this may be evidenced by increased use of recommended elements of pain assessment.

Based on the existing literature citing the importance of familiarity with the PLWD in pain assessment, two characteristics could describe this familiarity: relationship duration and type. Knowing how the PLWD regularly acts or behaves, a family caregiver with a closer relationship or longer length may be more equipped to utilize more of the pain assessment elements.

Health literacy—while described in family caregivers of other patient populations—has not been described in association with pain assessment for PLWD. 22-25 Limited health literacy was identified in one-third of caregivers of community-dwelling older adults with memory loss, indicating that it may also be relevant to our question in this study. 26 Higher health literacy may contribute to greater knowledge of pain as well as the ability to use assessment approaches that would help in recognizing pain.

Finally, caregiver depression has previously been associated with higher caregiver reports of pain in PLWD27 though associations with pain assessment elements or process have not been reported. In future interventions, identification of family caregiver depression may be an important variable in improving pain assessment.

Specific Aims and Hypotheses

The first aim of this study was to describe the frequency with which each pain assessment element was used by a sample of family caregivers of PLWD in a community setting. It was hypothesized that elements that have been more frequently cited in the qualitative literature (e.g., seeking causes of pain, seeking self-report, observing pain behaviors) would be used more often than elements that have not been commonly cited (e.g., asking others about pain or changes in behavior, analgesic trial, rechecking post-intervention, and documentation of pain).

The second aim of this study was to describe characteristics of family caregivers of PLWD that were associated with more frequent use of the different pain assessment elements. It was hypothesized that higher caregiving self-efficacy, longer relationship duration, closer relationship proximity (spouse, child), higher health literacy, higher educational level, and lower levels of depression would be associated with higher use of the pain assessment elements.

Methods

Study Design

This study was a descriptive cross-sectional design in which participants completed a series of surveys and instruments online. The study received Institutional Review Board approval (IRB#: 211884).

Participants

Family caregivers of PLWD were recruited in the United States through electronic listservs and family caregiver support groups, including: Alzheimer’s Association’s TrialMatch (visited by more than 370,000 individuals), Vanderbilt University Memory and Alzheimer’s Center (sent to 80 family caregivers), and the Vanderbilt University Resarch Notifications Distribution List (including over 18,000 participants) associated with ResearchMatch, a national, non-profit volunteer-to-researcher platform. Online recruitment was also conducted through social media platforms of caregiver groups with dissemination of electronic flyers. Participants were offered an electronic gift card to thank them for their contribution to the study.

A sample of at least 85 participants was initially sought to detect correlations representing what the authors thought would be meaningful associations (r > .30, ~10% shared variance, 2-tailed alpha=.05, 80% power). Recruitment was conducted from November of 2021 until August 2022. Due to the nature of online postings and email distribution lists, it is unkown exactly how many potential participants were reached. 59 individuals completed the consent and screening process. 3 (5.1%) did not meet the inclusion criteria while 8 (13.6%) did not complete enough of the necessary study assessments, resulting in an analysis sample of 48.

Family caregivers were eligible for inclusion if they met the following criteria: a) able to read and write in English, b) age 18 or older, c) living in the United States, d) being an unpaid family caregiver of a PLWD not living in a nursing facility, and e) the family caregiver had known the PLWD at least 10 years, and f) the family caregiver had at least weekly contact with the PLWD. Family caregivers were excluded if: a) the PLWD they care for had no formal dementia diagnosis by a licensed healthcare provider; b) the PLWD they care for had a diagnosis of Huntington’s disease, Parkinson’s disease, schizophrenia, bipolar disorder, deafness, or intellectual disability, (conditions with characteristics that may confound components of pain assessment in dementia) or; c) another family caregiver for the PLWD was enrolled in the study (to account for the independence assumptions in statistical tests). Family caregivers were not limited to marriage or biological relationship; other caregivers close to the PLWD were included, such as neighbors, if they met inclusion criteria.

Data Collection

Prospective participants completed a self-report survey to determine eligibility before proceeding with informed consent. If eligibility was met, participants were presented with a written description of the study and informed consent describing their rights as participants. A weblink for the study was provided in the recruitment materials and surveys were completed in REDCap (Research Electronic Data Capture), a secure online platform for building and managing online surveys. 28,29

Measures

Participants completed a demographic survey on themselves and the PLWD for whom they provide care. In addition to general demographic information, participants provided relationship duration with PLWD and relationship type.

Dementia Family Caregiver Pain Assessment Survey (DFCPAS):

This ten-item survey was developed by the PI and measures the frequency of use (percentage of time, visual analog scale) of elements of pain assessment (8 items), and qualitative responses (2 items) for additional methods of assessing pain and challenges/barriers to assessment. Survey item development was based on consultation with content experts in pain in older adults and actual caregivers of PLWD. Content validation was conducted with both groups and elements of pain assessment were adapted from the American Society for Pain Management Nursing’s 2019 clinical practice recommendations on pain assessment in the patient unable to self-report. 12

Caregiver Self-efficacy:

Self-efficacy was measured by the Revised Scale for Caregiving Self-Efficacy (RSCSE), a 15-item measure that results in scores for three subscales: self-efficacy for obtaining respite, self-efficacy for responding to disruptive behaviors, and self-efficacy for controlling upsetting thoughts about caregiving.20 A broad measure of caregiving self-efficacy was not used because subscales in this measure allowed for examination of specifically held beliefs by the caregiver which could be potentially useful in future intervention development.20 The subscales measured beliefs about specific caregiving challenges, including self-efficacy for obtaining respite, responding to disruptive patient behaviors, and controlling upsetting thoughts about caregiving. Self-efficacy for obtaining respite refers to cognitions about the ability of the caregiver to seek help from family or friends for tasks that may be interfered with by caregiving (e.g., attending a doctor’s appointment or taking a break). Self-efficacy for responding to disruptive patient behaviors measures the caregivers’ beliefs about their ability to respond without raising their voice or arguing back with patient behaviors such as repeated questions or complaints. Self-efficacy for controlling upsetting thoughts about caregiving, measures a caregiver’s beliefs about their ability to get rid of negative thoughts about caregiving such as unpleasant aspects of caregiving or the unfairness of the situation when those thoughts arise. Each subscale consists of five statements to which the participant responds with a rating from zero to 100 in increments of 10 points regarding their confidence in performing specific activities. A “not applicable” option is available. Per RSCE instructions, if a participant indicated “not applicable” for more than two of the five items of a subscale, that subscale was dropped for the participant.

Published reliability scores for this measure include internal consistency (Cronbach’s alpha .74-.85) and two-week test-retest reliability for each subscale (self-efficacy for obtaining respite: r=.76; self-efficacy for responding to disruptive patient behaviors: r=.70; self-efficacy for controlling upsetting thoughts: r=.76). 20 Confirmatory factor analysis has supported its three-factor structure, and there is evidence for convergent and discriminant validity. 20 The reliability of the scores generated in this study were Cronbach’s alpha of .85 (self-efficacy for obtaining respite), .87 (self-efficacy for responding to disruptive patient behaviors), and .87 (self-efficacy for controlling upsetting thoughts about caregiving).

Caregiver mood:

Mood was operationalized as depressive symptoms and was measured using the Center for Epidemiologic Studies-Depression Scale (CES-D), a self-administered 20-item scale measuring risk for depression. 30 Items were measured by a Likert scale with four options for how often feelings or behaviors occurred (rarely, some or little time, occasionally or moderate time, most of the time). Possible scores range from zero to 60 with higher scores indicating more depressive symptoms. The original authors indicate a score of ≥16 for identifying depression risk. Original studies of this measure showed high internal consistency (Cronbach’s alpha .85 in a general population, .90 in a patient population) and expected test-retest validity given mood changes over time (r=.31-.67 depending on time between testing). 30 More recent studies show high internal consistency (Cronbach’s alpha .90 for community-dwelling adults in the United States; .92 in a sample of family caregivers of PLWD). 31,32 Moderate concurrent validity with clinican-rated depression scales at admission and four weeks after treatment (Hamilton Clinician’s Rating scale: r=.44, .69; Raskin Rating scale r=.54, .75) as well as evidence for factorial, discriminant, convergent, and known-group validity have been reported. 30,32 Scores in this study had an internal consistency reliability coefficient of .74 (Cronbach’s alpha).

Caregiver health literacy:

This was measured using the Health Literacy Skills Instrument-Short Form (HLSI-SF) that consists of 10 items measuring health literacy domains: print literacy, numeracy, oral literacy, and navigation. 33 Answering 70-100% of questions correctly is considered adequate health literacy based on the original study. Reported internal consistency of the HLSI-SF is .70 (Cronbach’s alpha), and it has high correlation with the long form (r=.90). 33 There is also an expected small-to-moderate correlation with Short Test of Functional Health Literacy in Adults (s-TOFHLA) (r=.36). 33 In this study, scores had an interitem consistency coefficient of .65 (KR-20).

Data Analysis

Data were exported from the REDCap system into IBM SPSS Statistics v.28 for analyses. A maximum alpha of .05 (p < .05) was used for determinations of statistical significance. Participants were included in the analyses if they had completed at least the demographic survey and the DFCPAS. Descriptive statistics (frequency distributions, measures of central tendency and variability) were used to describe sample characteristics and responses to the caregiver measures (self-efficacy, mood, health literacy, relationship type and duration). Associations of bivariate, ordinal, and continuous caregiver characteristics with elements of pain assessment were assessed using Spearman’s rho coefficients. Analyses of characteristics comprised of > 2 groups (e.g., relationship type) were analyzed initially using Kruskal-Wallis tests. The resulting Kruskal-Wallis H statistic was transformed to a correlation coefficient using Psychometrica, an online instrument for computing effect sizes 34. If the multi-group difference was statistically significant, post-hoc pairwise between-group comparisons were made using Mann-Whitney tests with an appropriate Bonferroni correction to the alpha value for statistical significance.

Results

Demographic and other characteristics of caregivers (N=48) and PLWD (N=48) are shown in Tables 1 and 2. Participants (caregivers) had a median age of 54.0 (IQR: 38.2, 66.5), 83.3% (n=40) identified as female, and 81.2% (n=39) were white. Fifty percent (n=24) of the family caregiver participants were children of the PLWD and 25% (n=12) were spouses or partners. The PLWD had a median age of 77.0 (IQR: 72.2, 84.8), 50% (n=24) were female, 79.2% (n=38) were white and 43.8% (n=21) had Alzheimer’s type dementia. The median number of years for relationship between caregivers and PLWD was 48.0 (IQR: 30.5, 56.8).

Table 1.

Characteristics of the sample of family caregivers (N=48)

Variable Median (IQR)
Age (years) 54.0 (38.2, 66.5)
Variable n (%)
Sex
 Female 40 (83.3)
 Male 8 (16.7)
Race (select all)
 Black 8 (16.7)
 White 39 (81.2)
 More than one a 1 (2.1)
Education
 High school diploma or GED 5 (10.4)
 Some college 6 (12.5)
 Associate or technical degree 7 (14.6)
 Bachelor degree 15 (31.3)
 Graduate degree (Masters, Doctorate) 15 (31.3)
Annual household income ($)
 0-19,999 1 (2.1)
 20,000-39,999 5 (10.4)
 40,000-59,999 12 (25.0)
 60,000-79,999 9 (18.8)
 80,000-99,999 4 (8.3)
 100,000-124,999 5 (10.4)
 125,000-149-999 4 (8.3)
 150,000 or more 8 (16.7)
Marital Status
 Single 12 (25.0)
 Married 31 (64.6)
 Divorced 5 (10.4)
Relationship with PLWD
 Spouse or partner 12 (25.0)
 Child of person 24 (50.0)
 Sibling 1 (2.1)
 Some other family relationship 11 (22.9)
Employment Status
 Employed, full-time 32 (66.7)
 Employed, part-time 3 (6.3)
 Retired 13 (27.1)
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a

Hispanic and White

Table 2.

Characteristics of the person living with dementia as reported by family caregivers (N=48)

Variable Median (IQR)
Age 77.0 (72.2, 84.8)
Relationship length (years) 48.0 (30.5, 56.8)
Variable n (%)
Sex
 Female 24 (50.0)
 Male 24 (50.0)
Race (select all)
 Black 9 (18.8)
 Hispanic 1 (2.1)
 White 38 (79.2)
Dementia type
 Alzheimer’s disease 21 (43.8)
 Vascular dementia 7 (14.6)
 Lewy bodies 1 (2.1)
 Normal pressure hydrocephalus 1 (2.1)
 Alcohol-related 4 (8.3)
 Traumatic brain injury related 1 (2.1)
 Mixed 4 (8.3)
 Some other type 1 (2.1)
 Unsure 8 (16.7)
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Scores for caregiving self-efficacy (RSCSE), mood (CES-D), and health literacy (HLSI-SF) are shown in Table 3. Caregivers reported the highest self-efficacy for responding to disruptive patient behaviors followed by the self-efficacy for controlling upsetting thoughts about caregiving and the self-efficacy for obtaining respite subscales. A total of 56.8% showed risk of depression on the CES-D (N=25 of 44 respondents). Of the 40 participants who completed the HLSI-SF, 35.0% (N=14 of 40 respondents) had inadequate health literacy based on a score below 70%.

Table 3.

Caregiving self-efficacy, mood, and health literacy scores of family caregivers.

Measure N Minimum,
Maximum
Score		 Median Score
(IQR)
Self-efficacy for obtaining respite (RSCSE) 42 12, 100 61.0 (43.0, 84.0)
Self-efficacy for responding to disruptive patient behaviors (RSCSE) 42 42, 100 81.0 (67.5, 94.0)
Self-efficacy for controlling upsetting thoughts about caregiving (RSCSE) 43 2, 100 74.0 (54.0, 86.0)
Mood (CES-D) 44 4, 37 16.0 (14.0, 21.3)
Health Literacy (HLSI-SF) 40 2, 10 70 (52, 80)
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Caregiver Pain Assessment

Summaries of the elements of a pain assessment used by family caregivers are reported in Table 4. Observing pain behaviors was the most frequently used element (median: 98.0%, IQR: 75.0, 100.0), followed by rechecking (median: 96.0%, IQR: 75.0, 100.0), seeking self-report of pain (91.0%, IQR: 60.2, 100.0), and seeking causes of pain (83.5%, IQR:58.5, 100.0). Asking others if PLWD is in pain (median: 37.5, IQR: 10.0, 83.0) and documentation (median: 10.0, IQR: 0.0, 73.3) were the least utilized.

Table 4.

Reported frequencies of use of elements of pain assessment on the Dementia Family Caregiver Pain Assessment Survey (N=48)

Pain Assessment Element Median % (IQR)
Observing pain behaviors 98.0 (75.0, 100.0)
Rechecking 96.0 (75.0, 100.0)
Seeking self-report 91.0 (60.2, 100.0)
Seeking causes of pain 83.5 (58.5, 100.0)
Asking others if they have noticed behavior changes 72.5 (25.0, 93.8)
Analgesic trial 59.5 (50.0, 90.0)
Asking others if PLWD is in pain 37.5 (10.0, 83.0)
Documentation 10.0 (0.0, 73.3)
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Associations of Caregiver Characteristics with Elements of Pain Assessment

Associations of the caregiver characteristics (caregiving self-efficacy subscales, relationship duration, relationship type, education level, mood, and health literacy) with elements of pain assessment (DFCPAS) are shown in Table 5. Statistically significant associations between self-efficacy (for obtaining respite, for responding to disruptive behavior) were found for five or more elements of pain assessment. The strongest positive correlations were in the realm of self-efficacy for responding to disruptive behavior with increased use of rechecking (rho=.56, p<.001), asking other if they have noticed behavior changes (rho=.54, p<.001), seeking causes of pain (rho=.50, p<.001), and observing pain behavior (rho=.49, p<.001). The only statistically significant correlation of a relationship characteristic with the use of the pain assessment elements was between relationship type and use of rechecking (rho=.32, p=.037). Pairwise post-hoc tests revealed that spouses used the rechecking element more often than other family caregivers (p=.018) (Table 5).

Table 5.

Associations of Caregiver Characteristics with Dementia Family Caregiver Pain Assessment Survey Items

Seeking
causes
of
pain		 Seeking
self-
report		 Observing
pain
behaviors		 Asking
others
if
PLWD
is
in
pain		 Asking
others
if they
have
noticed
behavior
changes		 Analgesic
trial		 Rechecking Documentation
Self-efficacy for obtaining respite (N=42) .37 (.02) .90 (.58) .25 (.12) .39 (.01) .41 (.01) −.02 (.90) .38 (.01) .31 (.04)
Self-efficacy for responding to disruptive patient behaviors (N=42) .50 (<.001) .238 (.13) .49 (<.001) .44 (.003) .54 (<.001) −.09 (.57) .56 (<.001) .39 (.01)
Self-efficacy for controlling up setting thoughts about caregiving (N=43) .20 (.19) .04 (.82) .08 (.59) −.24 (.12) −.24 (.13) −.11(.48) −.03 (.83) −.10 (.52)
Relationship duration (N=48) .10 (.51) .19 (.19) −.02 (.88) .03 (.82) −.04 (.78) .19 (.20) .02 (.87) .05 (.74)
Relationship typea (N=48) .15 (.63) .20 (.92) .15 (.22) .18 (.18) .17 (.19) < .01 (.39) .32 (.04)b .08 (.42)
Mood (N==44) −.14 (.38) −.06 (.72) .19 (.21) .01 (.95) .16 (.30) −.09 (.57) .12 (.44) .15 (.34)
Education (N=48) −.15 (.31) −.15 (.33) −.19 (.20) −.09 (.55) −.07 (.62) −.04 (.80) −0.02 (.88) −.18 (.21)
Health literacy (N=40) .26 (.11) .04 (.79) .23 (.15) −0.21 (.19) −.16 (33) −.14 (.41) .08 (.61) −.22 (.18)
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Note: Values in cells are rho coefficient (p-value)

a

Correlation coefficient generated from transformation of Kruskal-Wallis H statistic https://www.psychometrica.de/effect_size.html

b

Pairwise post-hoc Mann-Whitney: spouse vs. child: p = .12, spouse vs. other family: p = .02, child vs. other family: p = .10

Discussion

This study examined the extent to which family caregivers of PLWD utilize elements of pain assessment and described associations between caregiver characteristics and utilization of pain assessment elements with PLWD. While the sample was smaller than desired, the study provides a foundation for future work and implications discussed here.

First, complementing prior qualitative research on pain assessment by caregivers of PLWD, this study indicated that family caregivers use a variety of elements of a pain assessment. The most common components of pain assessments were observing pain behaviors, rechecking for pain later, seeking self-report of pain, and seeking causes of pain. Combined with less frequently used methods, a picture of pain assessment by family caregivers of PLWD begins to emerge. It is likely that multiple elements of pain assessment are used simultaneously to form an impression about the presence of pain and decision about how to respond. Consistent with established literature that pain in PLWD is associated with increased behavioral symptoms of dementia (e.g. agitation or aggression), the observation of pain behaviors as the most frequent method used is expected. 35 While self-report of pain may be insufficient as a singular method of assessment in PLWD, persons with less cognitive impairment may be able to provide a report of their own pain. Our finding that caregivers use self-report is consistent with the gold standard of seeking self-report though this becomes less reliable with progression of dementia. 36 Both behavior and cognitive status are important parts of the picture of family caregiver pain assessment. Future research is warranted to understand the role of dementia progression in how family caregivers may change their approach to pain assessment in response to the disease trajectory. Additionally, seeking causes of pain is also unsurprising as a frequent element of assessment as is rechecking for pain. While we do not have the data to describe the role of rechecking for pain at a later time, it is possible it functions as a confirmatory test in pain assessment, particularly if some intervention, such as an analgesic trial was included in the pain assessment.

A second highlight from our study is family caregivers’ low use of documentation of pain as part of assessment. While often used by healthcare providers in medical records systems, documentation or tracking of pain was not a frequently used part of pain assessment by family caregivers. Again, while this study does not provide data to explain this, it may be because of the lack of recommendations to do this from others, such as their healthcare providers, or because of the additional labor involved in both recording and analyzing records of pain as part of care at home. There is a potential benefit to this practice as family caregivers may have better data to share with healthcare providers in addressing pain8 or in recognizing patterns and causes themselves.

A third important finding relates to the role of other informants in helping family caregivers determine pain in PLWD. One DFCPAS item asks participants if they seek information from others about PLWD pain. This question is derived from an American Society for Pain Management Nursing statement on nurses’ pain assessment in the patient who is unable to self-report12 where “other informants” refers to the family caregiver or another healthcare worker. The study finding that some family caregivers seek input about pain cues from others involved in the PWLD’s care is noteworthy. However, the family caregiver of the community-dwelling PLWD may be the only person performing pain assessment—therefore no other individual would be available with which to consult or compare information. To further contextualize this finding, more information is needed about how many other individuals were involved in the care of the PLWD and what relationship they had with the PLWD. Unfortunately, this information was not collected in this study and suggests a valuable question for future research.

The fourth major finding is the association of increased caregiving self-efficacy with increased use of multiple elements of pain assessment. Two types of caregiving self-efficacy (obtaining respite, responding to disruptive behavior) were the only measured variables shown here to have correlations with the more frequent use of different elements of pain assessment. One possible explanation for the association of self-efficacy with greater use of pain assessment elements is grounded in the use of self-efficacy theory for intervention development. 21

Promotion of self-efficacy has been used in a variety of interventions for dementia caregiving among family caregivers. 37-40 As skills mastery/mastery experiences are part of the original conception of self-efficacy by Bandura21, family caregivers with greater skills mastery of pain assessment likely have higher perceptions of their caregiving self-efficacy. The current data are insufficient for explaining a possible mechanism for the role of caregiving self-efficacy, though it does point the way for further research, particularly in intervention development, either new or as part of existing programs.

Finally, the caregiver characteristics that did not show any relationship with the use of pain assessment elements are notable. Relationship type and duration did not have statistically significant associations with use of pain assessment elements though it was expected there might be a relationship because of the role of knowing a person well in pain assessment. One possible explanation for this lack of association is that knowing the PLWD very well may result in more rapid assessment where the family caregiver is less aware of the different elements of pain assessment that inform their judgment. It is also possible that the study inclusion criteria of knowing the PLWD at least 10 years mitigated the likelihood of detecting differences based on relationship duration. Likewise, education level and health literacy did not have statistically significant associations. It is possible that dementia knowledge (instead of health literacy) would have been a better variable to measure in this study. Finally, caregiver mood (depressive symptoms) had no relationship with the use of pain assessment elements. While it was expected that the negative cognitions associated with depression may affect caregiving tasks (e.g., pain assessment) such as pain assessment, the relatively high rate of depressive symptoms (an important finding in itself) seen in this study may make it more difficult to detect such an association.

This study had strengths and limitations. Quantification of caregivers’ pain assessment practices provides new knowledge and a foundation for future work. In terms of limitations, recruitment difficulties resulted in not reaching the desired sample size of 85 participants, and the sample was less diverse than desired. Considering the number of recipients for each recruitment database, the response rate was very low, possibly reflecting a lack of time, interest, or response burden. Because of the nature of the recruitment approaches (online postings, large research mailing lists), it is difficult to know precisely how many individuals received recruitment information. Invitations were sent through each approach only once, potentially reducing the number of individuals recruited. Further, despite measures to prevent online foul play, social media (Facebook) recruitment efforts experienced online hacking. Measures taken to determine real versus fake responses included reviewing completion times for individual instruments (some being completed in one second) and contacting the provided email addresses in attempts to verify authenticity. While recruitment using methods such as Facebook in future studies should not be outright excluded, it may require careful planning to avoid the type of challenges experienced in this study. Future studies will benefit from a more varied approach to recruitment. Such varied approaches in addition to online recruitment (perhaps at adult care centers or geriatrics medical practices) may help to recruit a more diverse sample as previous research has shown that online recruitment methods may skew towards samples that are more white and have higher educational attainment than the general population. 41,42

There was also a risk of social desirability bias influencing responses, particularly the DFCPAS questions. While participants completed the surveys online, reducing the possibility of altering their responses to be more favorable in the company of the researcher, social desirability bias may still be present. Likewise, there may be some recall bias in the responses to the DFCPAS resulting in either higher or lower reported frequencies for the pain assessment elements.

Conclusion

This study makes an important contribution towards understanding pain assessment by family caregivers of PLWD. Future studies with larger and more diverse samples will continue to advance a more complete picture of pain assessment by family caregivers. As higher levels of caregiving self-efficacy are associated with the use of elements of pain assessment, our next steps will address caregiving self-efficacy among family caregivers of PLWD. It will be valuable to determine the perceptions that contribute toward their feelings of caregiving self-efficacy, as well as the types of mastery experiences that could improve family caregivers’ pain assessments. This knowledge will, in turn, help in developing new educational resources and approaches to support the family caregivers of this important patient population.

Highlights:

  • Pain in people living with dementia is often assessed by their family caregivers

  • These family caregivers frequently use different elements of pain assessment

  • Caregiving self-efficacy is correlated with how frequently they use these elements

Funding:

This work was supported by the Vanderbilt Institute for Clinical and Translational Research (VICTR) (NCATS CTSA Program, 5UL1TR002243-03) and with the use of REDCap (UL1 TR000445 from NCATS/NIH).

Declarations of conflict of interest:

Dr. Keela Herr has received funding from the AARP (American Association of Retired Persons) for the development of materials and videos to support family caregivers of person with dementia in pain management. Dr. Keela Herr served as a consultant on a funded project at Cornell University (NIH/NIA 3P30AG022845-15S1).

Footnotes

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Jeffrey Boon reports financial support was provided by Vanderbilt Institute for Clinical and Translational Research. Keela Herr reports a relationship with AARP that includes: funding grants. Keela Herr reports a relationship with Cornell University that includes: consulting or advisory.

Declaration of interests

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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