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. 2023 Mar 6;38(7):1054–1067. doi: 10.1093/arclin/acad022

Informant Characteristics Influence Reports of Participant Functioning and their Associations with Neuropsychological Performance in Non-Hispanic Black Adults

Lisa V Graves 1,✉, Sharon Hamill 2, Maiya Larry 3, Destiny Williams 4
PMCID: PMC10599608  PMID: 36881929

Abstract

Objective

Assessing one’s functional capacity—in addition to neuropsychological performance—is essential for determining neurocognitive status, and functional assessment is often provided via informant report. Although informant characteristics have been shown to influence reports of participant functioning, the degree to which they moderate relationships between reported functioning and participant performance on neuropsychological testing is unclear. Moreover, associations among informant characteristics, reported functioning, and neuropsychological performance have not been adequately examined with non-Hispanic Black (NHB) samples, despite this population’s disproportionately high risk of Alzheimer’s disease and related dementias.

Method

In this cross-sectional observational study, we examined the influence of informant characteristics on informant reports of participant functioning (assessed via the Functional Activities Questionnaire [FAQ]) and associations between reported functioning and participant performance on neuropsychological testing, among NHB adult participants in the National Alzheimer’s Coordinating Center cohort (n = 1024).

Results

Informants who were younger, female, more educated, knew participants longer, or lived with participants reported poorer participant functioning (p < .001). However, younger (vs. older) informants provided reports of functioning that were more predictive of visuoconstructional ability and visual memory, and male (vs. female) informants provided reports of functioning that were more predictive of verbal memory, visuoconstructional ability and visual memory, and language (ps < .001).

Conclusions

Within the context of neurocognitive evaluations of NHB participants, informant characteristics may influence subjective reports of participants’ functioning and the extent to which reported functioning corroborates objective participant performance on neuropsychological testing.

Keywords: Alzheimer’s disease, Assessment, Cross-cultural/minority, Dementia, Everyday functioning

Currently, 6.5 million Americans aged 65 and older are living with Alzheimer’s disease (AD), and this number is expected to reach 12.7 million by 2050 (Alzheimer’s Association, 2022). Racial disparities are evident in that Black Americans are disproportionately affected by AD and related dementias (ADRD; Bernstein, 2015; Colby & Ortman, 2017; Matthews et al., 2019; Mayeda, Glymour, Quesenberry, & Whitmer, 2016; Rajan, Weuve, Barnes, Wilson, & Evans, 2019; Steenland, Goldstein, Levey, & Wharton, 2015). Moreover, despite Black Americans making up 13% of the U.S. population, they carry the burden of 33% of the nation’s total cost of ADRD-related care (Us Against Alzheimer’s, 2020). Nevertheless, concern about developing ADRD is lower among Black and other racial/ethnic minority adults than among White adults, and they are less likely to seek medical care if they experience thinking or memory problems (Lennon et al., 2022). This may be due to a tendency for Black adults to view memory loss and cognitive decline as part of typical aging (Alzheimer’s Association, 2021), as well as mistrust of medical providers due to past experiences of racism and discrimination in healthcare settings (Chapman, Kaatz, & Carnes, 2013). Relatedly, research suggests that Black adults have a higher risk of underdiagnosis of mild cognitive impairment (MCI) and dementia due to ADRD compared to White adults (Gianattasio et al., 2019; Graves et al., 2021). Risks of underdiagnosis include but are not limited to prevention or delay of timely access to treatment and resources, which can perpetuate existing racial/ethnic disparities in ADRD. Our knowledge of the epidemiology of ADRD is further complicated by a limited understanding of how commonly used diagnostic methods generalize to racially/ethnically diverse groups, including Black adults (Chin, Negash, & Hamilton, 2011). For example, research suggests that misdiagnosis of ADRD among Black adults and individuals from other racial/ethnic minority backgrounds can occur due to poor reliability of cognitive screening or other diagnostic tools with these populations (Rovner, Casten, Arenson, Salzman, & Kornsey, 2012).

In-depth investigation of factors contributing to diagnostic accuracy among Black adults will be imperative given the current estimates and projections of ADRD in this population. Furthermore, adopting more culturally-mindful and -appropriate approaches to optimizing the integrity of neurocognitive evaluations may be an important step toward building trust between Black adults and healthcare professionals providing these services. Any resulting improvements in diagnostic accuracy and timeliness as well as service access and usage may help to reduce ADRD-related disparities in this population.

Informant Role in the Diagnosis of Neurocognitive Disorders Due to ADRD

The Diagnostic and Statistical Manual for Mental Disorders, 5th Edition (DSM-5; American Psychiatric Association, 2013) states that major neurocognitive disorder (i.e., dementia) involves significant decline in one or more cognitive domains that interferes with one’s ability to perform daily activities independently. Thus, assessing one’s functional capacity—in addition to neuropsychological performance—is essential for determining neurocognitive status. Functional assessment is often provided via informant report, and informants are often paid caregivers, partners, family members, or friends of participants.

Informant characteristics influence informant reports of participant functioning. Limited research suggests that informant characteristics influence reports of participant functioning. For example, individuals who are partners of participants with MCI or dementia due to ADRD have been shown to report better participant functioning compared to those with other types of relationships with participants, although this is based on research using primarily non-Hispanic White (NHW) samples (Persson, Braekhus, Selbaek, Kirkevold, & Engedal, 2015). However, perceptions and experiences of dementia can vary across cultural groups, which in turn may contribute to heterogeneity in the reporting of changes or difficulties with various aspects of daily living (Barnes & Bennett, 2014; Chui & Gatz, 2005; Dilworth-Anderson & Gibson, 2002; Mis, Devlin, Drabick, & Giovannetti, 2019; Potter et al., 2009; Rovner, Casten, & Harris, 2013). For example, relative to White caregivers of individuals with dementia, Black caregivers have been shown to overestimate their care recipients’ cognitive abilities (Burns, Nichols, Graney, Martindale-Adams, & Lummus, 2006) and view caregiving situations more favorably and optimistically (Farran, Miller, Kaufman, & Davis, 1997; Potter et al., 2009; Raczynski et al., 1994). A recent study of participants with MCI in the National Alzheimer’s Coordinating Center (NACC) cohort showed that after controlling for participant age, sex/gender, cognition, and depression symptoms, participants with Black informants were reported to have better functioning (based on Functional Activities Questionnaire [FAQ] scores) compared to participants with informants from other racial/ethnic backgrounds (Hackett, Mis, Drabick, & Giovannetti, 2020). Aside from racial/ethnic background, FAQ scores also varied by other informant characteristics including education, relationship type, and cohabitation status, such that informants who were more educated, were partners, adult children, or paid caregivers (vs. siblings, other relatives, or friends) of participants, or lived with participants reported poorer participant functioning. Of note, although the analysis by Hackett and colleagues (2020) examined the influence of informant race/ethnicity on reported functioning, the MCI participants were primarily (78%) White. Thus, although the above findings collectively suggest that informant reports of participant functioning can vary based on the characteristics of informants and their relationships with their study partners (i.e., the participants), the extent to which this is true for non-Hispanic Black (NHB) adults undergoing neurocognitive evaluation for MCI or dementia due to ADRD, specifically, has not been adequately investigated.

What do informant reports of participant functioning tell us about participants’ cognitive abilities? Subjective informant reports of participant functioning are designed to provide insight into a participant’s everyday cognitive and functional abilities and are evaluated in conjunction with objective participant performance on neuropsychological testing in diagnostic settings. However, it is important to acknowledge that cognition may only modestly account for variance in functional outcomes, and some cognitive domains may be more relevant than others to functional capacity (Royall et al., 2007). That said, elucidating the extent to which informant characteristics might influence the degree of correspondence between subjective informant reports of participant functioning and objective participant performance on neuropsychological testing is one approach to improving our understanding of the different sources of data available within the context of neurocognitive evaluations and their potential influence in neurocognitive disorder diagnosis. For example, some studies using primarily NHW samples have examined the degree of correspondence between reported functioning and neuropsychological performance and found that informants who are younger, more educated, partners of participants, or live with participants and see them frequently are more likely to provide reports of functioning that corroborate cognitive performance (Cacchione, Powlishta, Grant, Buckles, & Morris, 2003; Lin, Brook, Grill, & Teng, 2017; Loewenstein et al., 2001; Ready, Ott, & Grace, 2004). Like some studies involving other racial/ethnic groups, the few studies that have focused on the relationship between reported functioning and neuropsychological performance in Black samples suggest that informant reports of cognitive or functional abilities do not correspond consistently with participant performance on neuropsychological testing in these groups (Graves et al., 2021; Jackson et al., 2017; Sims et al., 2011). Further investigation of the role of informant characteristics in moderating the degree of correspondence between reported functioning and neuropsychological performance in NHB adults may be an important part of the ongoing effort to improve accuracy and timeliness of ADRD diagnosis in NHB adults.

Summary of Current Gaps in the Literature

Some questions remain: which informant characteristics influence informant reports of functioning among NHB participants; which of these characteristics, in turn, moderate associations between reported functioning and participant performance on neuropsychological testing; and are moderating effects of informant characteristics relevant to some cognitive domains and not others? Findings from research addressing these gaps may inform the development and implementation of practical recommendations to facilitate more accurate and timely ADRD diagnosis and in turn reduce ADRD-related disparities in the NHB adult population.

Aims of the Present Study

The present study sought to examine the influence of informant characteristics on subjective informant reports of participant functioning (assessed via the FAQ) and explore associations between reported functioning and objective participant performance on neuropsychological testing, among NHB adult participants in the NACC cohort. In our primary analysis, we hypothesized that FAQ scores would vary as a function of multiple informant characteristics. Specifically, we predicted that informants who were more educated, were partners, adult children, or paid caregivers of participants, and lived with participants, would report poorer participant functioning. Additionally, in our exploratory analysis, we hypothesized that at least a subset of these informant characteristics would, in turn, moderate associations between reported functioning and neuropsychological performance.

Method

The NACC Uniform Data Set (UDS) was implemented in 2005 by the National Institute on Aging (NIA) Alzheimer’s Disease Research Centers (ADRCs) program with the intention of longitudinally assessing cognitive and other clinical changes in MCI and dementia due to ADRD (e.g., AD, Lewy body disease, frontotemporal lobar degeneration) among aging adults in the U.S. Referral sources include non-professional contacts (e.g., self, relative, or friend), professional contacts (e.g., healthcare provider), and other (e.g., community-based) sources. As determined by the University of Washington Human Subjects Division, the NACC database itself is exempt from institutional review board (IRB) review and approval because it does not involve human subjects, as defined by federal and state regulations. However, all contributing ADRCs are required to obtain informed consent from their participants and to maintain their own separate IRB review and approval from their institution prior to submitting data to NACC. The present study used data from Version 3.0 of the UDS, collected at baseline visits conducted across 32 ADRCs from March 2015 to March 2021 (alz.washington.edu). The study was conducted in accordance with the Helsinki Declaration of 1975.

Participants

Study participants included 1,024 NHB participants who were 45 years of age or older and identified as female or male (descriptive statistics associated with participant and informant characteristics are provided in Table 1). All study participants: completed at least 6 years of formal education; reported English as their primary language; underwent neuropsychological testing in English; and had FAQ scores available and reported by a reliable informant (the NACC UDS includes a categorical variable [yes, no, not available] indicating whether there is any question about a respective informant’s reliability; in the present study, only participants for whom there was no question about their informant’s reliability were included). All participants were classified as having normal cognition, being impaired but without MCI (“impaired-not-MCI”; defined by the NACC as cognitive impairment that neither fully meets MCI criteria nor represents normal aging; Beekly et al., 2007), having MCI, or having dementia. Determination of cognitive status is made by the evaluating physician or a consensus team, and this process varies according to each ADRC’s protocol. Diagnostic decisions are based on a review of all available information obtained during the ADRC visit, including: demographic information; history of medical conditions and medication use; clinical and neurological examination findings; behavioral and functional measures; clinical ratings of dementia severity; and neuropsychological test scores.

Table 1.

Mean (standard deviation, range) and percentage values associated with participant and informant characteristics

Variable Participants
(n = 1024)		 Informants
(n = 1024)
Age (years) 69.73 (8.11, 45–102) 65.20 (13.79, 23–103)
Sex/Gender (% female) 77.83% 69.84%
Education (years) 15.19 (2.61, 6–22) 15.16 (2.59, 1–24)
Race
 Black 100.00% 91.02%
 White 4.10%
 American Indian or Alaska Native 0.29%
 Native Hawaiian or Pacific Islander 0.20%
 Multiracial 3.81%
 Unknown or ambiguous 0.59%
Hispanic Ethnicity
 No 100.00% 98.24%
 Yes 0.00% 1.46%
 Unknown 0.00% 0.29%
Cognitive Status
 Normal cognition 58.20%
 Impaired-not-mild cognitive impairment 7.32%
 Mild cognitive impairment 23.34%
 Dementia 11.13%
Relationship Type
 Partner 31.84%
 Adult child 26.56%
 Sibling 12.89%
 Other relative 4.79%
 Friend 23.73%
 Paid caregiver 0.20%
Relationship Length (years) 41.19 (18.22, 1–84)
Cohabitation Status (% living with participant) 39.84%
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Neuropsychological and Functional Measures

Neuropsychological measures

Raw neuropsychological test scores were derived from measures available in Version 3.0 of the NACC UDS (Weintraub et al., 2018) and encompassed the following cognitive domains: verbal memory (Craft Story Immediate Recall, Craft Story Delayed Recall); visuoconstructional ability and visual memory (Benson Complex Figure Copy, Benson Complex Figure Recall); language (Multilingual Naming Test, Animal Fluency, Vegetable Fluency, Letter F Fluency, Letter L Fluency); attention and working memory (Number Span Forward, Number Span Backward); and executive functioning and processing speed (Trail Making Test [TMT] Part A, TMT Part B). For all inferential analyses, TMT scores were transformed (100/×) so that higher scores reflected better performance, consistent with other neuropsychological measures examined in the present study. Descriptive statistics associated with performance on neuropsychological measures are provided in Table 2.

Table 2.

Descriptive statistics associated with participant performance on neuropsychological and functional measures

Corresponding Cognitive Domain Neuropsychological or Functional Measure N Mean Standard Deviation Standard Error
Verbal Memory Craft Story Immediate Recall 1,002 17.91 7.41 0.23
Craft Story Delayed Recall 997 14.63 7.55 0.24
Visuoconstructional Ability and Visual Memory Benson Complex Figure Copy 1,000 14.61 2.38 0.08
Benson Complex Figure Recall 995 9.15 4.07 0.13
Language Multilingual Naming Test 999 27.23 3.95 0.12
Animal Fluency 1,006 16.99 5.45 0.17
Vegetable Fluency 1,005 12.87 4.48 0.14
Letter F Fluency 1,001 12.22 4.69 0.15
Letter L Fluency 999 11.46 4.57 0.14
Attention and Working Memory Number Span Forward 1,007 7.39 2.22 0.07
Number Span Backward 1,003 5.57 2.17 0.07
Executive Functioning and Processing Speed Trail Making Test Part A 991 44.31 0.81 25.35
Trail Making Test Part B 921 123.41 2.27 68.85
Daily Functioning Functional Activities Questionnaire 1,024 2.53 6.51 0.20
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Notes: On the Trail Making Test and Functional Activities Questionnaire, higher scores correspond to poorer performance. On all other tests, higher scores correspond to better performance. In inferential analyses, Trail Making Test scores were transformed so that higher scores reflect better performance, consistent with other neuropsychological measures.

Composite z-scores were generated for each participant in each cognitive domain as follows: regressions with participant age, sex/gender, and education as predictors and individual neuropsychological test scores as outcome variables were conducted on a normative subsample (those identified in the NACC UDS as being classified as having normal cognition at each visit); unstandardized regression coefficients (from step 1) were used to generate predicted scores for each participant on each neuropsychological test; predicted scores (from step 2), observed scores, and standard error estimates (from step 1) were used to generate z-scores for each participant on each neuropsychological test; and a single composite z-score was generated for each participant in each cognitive domain by averaging z-scores across each neuropsychological test within each respective domain (see Table 2 for neuropsychological tests and their corresponding domains).

Functional measure

Informant reports of participant functioning were provided using total scores on the FAQ, with higher scores reflecting poorer reported functioning. The FAQ is an informant-reported measure that assesses a participant’s level of independence with respect to various daily activities, including managing finances (e.g., shopping, paying bills, managing financial records), cooking (e.g., using kitchen appliances, meal preparation), everyday memory (e.g., keeping track of current events, paying attention, remembering dates), navigation, and recreation (Pfeffer, Kurosaki, Harrah Jr., Chance, & Filos, 1982). Mean and standard deviation values for the FAQ are provided in Table 2. The observed range of FAQ scores in the present study was 0–30, and the distribution of FAQ scores was positively-skewed (2.91) and leptokurtic (7.49; note: skewness was not substantially improved following transformation; thus, original raw FAQ scores were analyzed). In our NHB sample, the FAQ showed strong internal consistency (Cronbach’s alpha = 0.97) and medium to large degrees of convergent validity as demonstrated by correlations between FAQ scores and composite z-scores on verbal memory (r = −0.49), visuoconstructional ability and visual memory (r = −0.54), language (r = −0.44), attention and working memory (r = −0.27), and executive functioning and processing speed (r = −0.36; ps < .001). These findings are in line with previous research (González, Gonzales, Resch, Campbell Sullivan, & Soble, 2021).

Statistical Analyses

Statistical analyses were conducted using the IBM SPSS® software platform (Version 28). All study participants were NHB and were further characterized with respect to age (years), sex/gender (female, male), and education (years). Their informants were characterized with respect to age (years), sex/gender (female, male), education (years), race (Black, White, American Indian or Alaska Native, Native Hawaiian or Pacific Islander, multiracial, unknown, or ambiguous), Hispanic ethnicity (no, yes, unknown), relationship type (partner, adult child, sibling, other relative, friend, paid caregiver), relationship length (years), and cohabitation status (yes, no). Table 1 includes descriptive statistics associated with participant and informant characteristics. Informants were 23–103 years in age and mostly female (69.84%). Although all participants were NHB, there was some variability in informant race, but most informants also identified as Black (91.02%). Most informants were partners of participants, and there was substantial variability in the length of relationships between informants and participants (1–84 years).

Analytic plan to test primary hypothesis

To examine which informant characteristics influenced informant reports of participant functioning, a regression with informant characteristics (age, sex/gender, education, race, ethnicity, relationship type, relationship length, cohabitation status) as predictors and FAQ score as the outcome variable was conducted. This regression also included participant age, sex/gender, and education as covariates given the widely reported effects of these demographic characteristics on cognitive and functional outcomes in the literature. Inferential statistics associated with the omnibus regression are reported later in the text; Pearson partial correlation coefficients and corresponding p-values associated with independent effects of informant variables are provided in Table 3.

Table 3.

Pearson partial correlation coefficients and corresponding p-values associated with the primary regression examining the influence of informant characteristics on reported functioning

Informant Characteristic r p p
Age -.12 <.001
Sex/Gender .07 .033
Education .07 .032
Race -.01 .877
Ethnicity -.03 .333
Relationship Type .00 >.999
Relationship Length .10 .003
Cohabitation Status .17 <.001
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Analytic plan to test exploratory hypothesis

Exploratory regressions were conducted to examine whether informant characteristics shown to significantly predict FAQ scores in the first, primary regression moderated associations between FAQ scores and composite z-scores on verbal memory, visuoconstructional ability and visual memory, language, attention and working memory, and executive functioning and processing speed, while accounting for participant age, sex/gender, and education. Five informant variables—age, sex/gender, education, relationship length, and cohabitation status—were shown to be significant predictors of FAQ scores in the first, primary regression. Thus, five sets of exploratory regressions were conducted, and each set included five total regressions, one for each of the five cognitive domains examined as outcomes. An adjusted alpha of 0.01 was applied toward each set of regressions to account for multiple tests (0.05/5 = 0.01). Inferential statistics associated with omnibus regression analyses are reported later in the text; Pearson partial correlation coefficients and corresponding p-values associated with moderating effects of informant variables are provided in Table 4.

Table 4.

Pearson partial correlation coefficients and corresponding p-values associated with exploratory regressions examining potential moderating effects of informant characteristics on associations between reported functioning and neuropsychological performance

Informant Characteristic
Cognitive Domain Age Sex/Gender Education Relationship Length Cohabitation Status
r p p r p p r p p r p p r p p
Verbal Memory −.04 .268 .08 .008 .01 .873 −.01 .814 −.01 .802
Visuoconstructional Ability and Visual Memory −.09 .004 .11 <.001 .01 .760 −.01 .658 .02 .518
Language −.05 .130 .17 <.001 .04 .228 −.02 .409 −.05 .109
Attention and Working Memory .00 .943 .03 .432 .01 .887 .00 .987 .00 .936
Executive Functioning and Processing Speed .00 .932 −.02 .571 .06 .069 −.03 .335 .00 .913
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Tests of regression assumptions

Assumptions of regression were tested using P–P plots and scatterplots of predicted values and residuals (to assess normality, homoscedasticity, and linearity) and variance inflation factor (VIF) values (to assess for absence of multicollinearity).

Effect size interpretations

The following cutoffs were used to facilitate interpretation of effect size values from inferential analyses (Cohen, 1992): for Pearson partial correlation coefficients (rp), values of 0.1, 0.3, and 0.5 represented small, medium, and large effect sizes, respectively; for R2, values of 0.02, 0.13, and 0.26 represented small, medium, and large effect sizes, respectively.

Missing data

Missing data were handled using listwise deletion in regressions.

Results

Primary Analysis: Influence of Informant Characteristics on Reported Functioning

With regard to variables involved in the primary analysis, tests of regression assumptions yielded evidence of non-normality, heteroscedasticity, and non-linearity, which is not surprising given the positively-skewed distribution of FAQ scores. There was no substantial evidence of multicollinearity (VIF values ranged from 1.01 to 2.74).

The primary analysis showed that informant age, sex/gender, education, relationship length, and cohabitation status were significant predictors of FAQ scores, after accounting for participant age, sex/gender, and education, F(11, 970) = 14.15, p < .001, R2 = 0.14. Informants who were younger, female, more educated, had longer relationships with participants, and lived with participants reported poorer participant functioning (see Table 3 for Pearson partial correlation coefficients and corresponding p-values associated with independent effects of informant variables). With regard to sex/gender, a post-hoc analysis also revealed a significant informant sex/gender × participant sex/gender interaction effect on reported functioning, after accounting for main effects of informant sex/gender and participant sex/gender, as well as participant age and education, F(5, 1,018) = 9.23, p < .001, R2 = 0.073. Male informants reported significantly poorer functioning for female versus male participants, whereas female informants reported significantly poorer functioning for male versus female participants (p = .002; see Fig. 1). This appeared to be driven by discrepancies in reporting on male participants’ functioning, such that female informants reported poorer functioning compared to male informants; for female participants, reports of functioning did not vary by informant sex/gender.

Fig. 1.

Fig. 1

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Estimated marginal means (and standard errors) associated with the informant sex/gender × participant sex/gender group differences on FAQ scores, after accounting for participant age and education. Significant group differences are denoted by an asterisk (*).

Exploratory Analysis: Influence of Informant Characteristics on Associations Between Reported Functioning and Neuropsychological Testing

Given the above findings from the first, primary regression analysis, subsequent regressions were conducted to examine whether informant age, sex/gender, education, relationship length, and/or cohabitation status moderated associations between informant reports of participant functioning and participant performance on neuropsychological testing, after accounting for participant age, sex/gender, and education. With regard to variables involved in the exploratory analysis, tests of regression assumptions yielded no substantial evidence of non-normality or non-linearity, but showed some evidence of heteroskedasticity. There was no substantial evidence of multicollinearity (VIF values ranged from 1.01 to 1.28). Pearson partial correlation coefficients and corresponding p-values associated with moderating effects of informant variables are provided in Table 4.

Age

A significant informant age × FAQ score interaction effect on visuoconstructional ability and visual memory was observed, after accounting for main effects of informant age and FAQ score and participant age, sex/gender, and education, F(6, 968) = 69.98, p < .001, R2 = 0.303. Specifically, poorer participant functioning was associated with poorer visuoconstructional ability and visual memory, and the magnitude of this association was stronger for participants with younger informants than for those with older informants.

Sex/gender

Significant sex/gender × FAQ score interaction effects on verbal memory (F[6, 990] = 56.10, p < .001, R2 = 0.254), visuoconstructional ability and visual memory (F[6, 988] = 71.92, p < .001, R2 = 0.304), and language (F[6, 984] = 45.07, p < .001, R2 = 0.216) were observed, after accounting for main effects of informant sex/gender and FAQ score and participant age, sex/gender, and education. Specifically, poorer participant functioning was associated with poorer verbal memory, visuoconstructional ability and visual memory, and language, and the magnitude of this association was stronger for participants with male informants than for those with female informants (see Fig. 2). Of note, the majority (91.90%) of male informants had female study partners. No informant age, education, relationship length, or cohabitation status × FAQ score interaction effects on neuropsychological performance were observed (ps > .01).

Fig. 2.

Fig. 2

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Informant sex/gender moderated associations between FAQ scores and composite z-scores on verbal memory (A), visuoconstructional ability and visual memory (B), and language (C).

Taken together, although informant age, sex/gender, education, relationship length, and cohabitation status were significant predictors of FAQ scores, only informant age and sex/gender, in turn, significantly moderated associations between FAQ scores and neuropsychological performance.

Discussion

Findings from the present study supported our primary and exploratory hypotheses by demonstrating that multiple informant characteristics influenced informant reports of functioning in our NHB adult sample, and that a subset of these characteristics, in turn, moderated associations between reported functioning and participant performance on neuropsychological testing. Specifically, informants who were more educated and lived with participants reported poorer functioning in our NHB sample, in line with previous research using primarily NHW samples. However, in contrast to previous studies, no effect of relationship type on reported functioning was observed in the present study. Of note, our study is the first to show that informants who are younger, female, and have had longer relationships with participants also report poorer functioning in NHB adults. Moreover, of the informant characteristics shown to influence informant reports of participant functioning, age and sex/gender, in turn, moderated associations between reported functioning and participant performance on neuropsychological testing, but only with respect to certain cognitive domains. We discuss our findings in further detail below.

Multiple Informant Characteristics Influenced Subjective Informant Reports of Participant Functioning and Some Also Moderated Associations Between Reported Functioning and Objective Participant Performance on Neuropsychological Testing

Education

Informants who were more educated reported poorer NHB participant functioning, in line with previous research based on primarily NHW samples (Hackett et al., 2020), and providing further evidence that informants who are more educated may be more sensitive to (or more likely to perceive) functional changes among those to whom they serve as informants, including NHB adults. However, we cannot necessarily conclude that more educated informants provided more accurate reports of NHB participant functioning, given no moderating effect of informant education on associations between reported functioning and neuropsychological performance was observed.

Relationship length and cohabitation status

Informants who knew participants longer and who lived with participants reported poorer participant functioning and may therefore be more sensitive to (or more likely to perceive) functional changes among NHB adults. However, we cannot necessarily conclude that these informants provided more accurate reports of NHB functioning, given no moderating effects of relationship length or cohabitation status on associations between reported functioning and neuropsychological performance were observed.

Although the present findings may be expected and a cohabitation effect has been described in previous research (Hackett et al., 2020), these effects on reported functioning have not been reported previously with an NHB sample. Moreover, although previous studies also suggest that informant reports of participant functioning vary based on the type of relationship between the informant and participant, no effect of relationship type was observed in the present study, perhaps because any potential influence of relationship type was overridden by the effects of relationship length and/or cohabitation status in our NHB sample. Thus, for NHB adults, how long an informant has known them, and whether the informant lives with them, may have a stronger influence than the type of relationship they have with their informant, on how their informant rates their daily functioning abilities. These inconsistent findings regarding the effect of relationship type across studies may also be partly due to differences across studies in the degree of heterogeneity observed in the types of relationships between participants and informants. In the present study, the largest proportion of the NHB participants’ informants were partners (31.84%), followed by adult children (26.56%), friends (23.73%), siblings (12.89%), other relatives (4.79%), and lastly paid caregivers (0.20%). In prior research using primarily NHW samples, higher proportions of informants who were partners have been reported (e.g., 60.00% in Hackett et al., 2020).

Age

Compared to older informants, younger informants reported poorer NHB participant functioning. Additionally, reported functioning was more predictive of performance in visuoconstructional ability and visual memory for participants with younger informants than for those with older informants. Taken together, compared to older informants, younger informants may be not only more sensitive to functional changes, but more accurate in their judgment of NHB participants’ functioning, particularly as it relates to visuoconstructional ability and visual memory. The fact that the informant age × FAQ score interaction effect was relatively circumscribed—observed only within the domain of visuoconstructional ability and visual memory—may relate to age- or generation-related differences in the relationship between everyday technology use and visual cognition. Over the past few decades, there has been a substantial increase among adults, both younger and older, in the use of technology for completing various daily activities such as those listed on the FAQ, including: managing finances, appointments, and other important correspondence (e.g., email); online shopping; reading the news or other literature; and playing games and other hobbies. Many technological tools involve the use of visual cognitive skills. Other daily activities involving travel (e.g., driving and navigation) also rely heavily on visual cognition. However, research suggests that age moderates the relationship between everyday technology use and performance on visually-based tests of cognitive or daily functioning (e.g., multitasking ability), where the association is stronger for younger versus older adults (Matthews, Mattingley, & Dux, 2022). Moreover, given that in today’s society, younger adults were introduced to technology earlier in life than their older counterparts, they may have a stronger preference or expectation to incorporate technology into daily activities, particularly those with a strong visual component. Relatedly, within the context of the present study, younger informants’ ratings of their NHB study partners’ (participants’) daily functioning abilities may more closely capture or reflect cognitive abilities in the visual domain. However, it is important to note that technology use could not be assessed in the present study, and this interpretation is therefore speculative and should be deliberated with caution.

Sex/gender

Although informants generally rated functional abilities less favorably for participants of the opposite sex/gender, mean FAQ scores were lowest among male participants with female informants. However, reported functioning was more predictive of performance in verbal memory, visuoconstructional ability and visual memory, and language for participants with male informants than for those with female informants. Taken together, although female informants may be particularly sensitive to (or more likely to perceive) functional changes among male participants, male informants may be more accurate in their judgment of NHB participants’ functioning, particularly as it relates to verbal memory, visuoconstructional ability and visual memory, and language. Of note, the majority (91.90%) of participants with male informants were women, and research has shown that women demonstrate better performance in verbal episodic memory compared to men (Loprinzi & Frith, 2018). Thus, the present findings suggest that male informants may be particularly accurate in identifying changes that NHB women demonstrate in daily functioning abilities related to visuoconstructional ability and visual memory and language in addition to verbal memory. Of note, these three domains represent higher-order aspects of cognition that are important for successful daily functioning, and the individual neuropsychological tests that comprised these domains encompassed the majority of the overall test battery (9 out of 13 tests) in the present study. Thus, the moderating effect of informant sex/gender on the association between informant reports of NHB participants’ functioning and participant performance on neuropsychological testing appeared to be relatively robust in our sample.

Recommendations for Clinical Practice

Currently, within the context of a neurocognitive evaluation, whether cognitive deficits demonstrated by an examinee on objective neuropsychological testing are suspected to be compromising the examinee’s functional independence ultimately determines whether they meet criteria for a major versus mild neurocognitive disorder. Substantial emphasis is placed on an informant’s subjective report of the examinee’s daily functioning, and in many cases, cut-points are applied toward total scores on subjective informant-reported daily functioning measures such as the FAQ to indicate the presence versus absence of functional impairment (e.g., Teng and colleagues (2010) report an optimal cut-point of 5/6 on the FAQ for differentiating between MCI and dementia due to AD). However, this determination is often made without thoughtful consideration of whether one’s total score is an accurate reflection of their functional capacity, and incidental factors that might inadvertently inflate or deflate this score. The present findings suggest that, for an NHB examinee, their total FAQ score—and the extent to which it corroborates their objective performance on neuropsychological testing—can be influenced by certain characteristics of their informant and their relationship to the participant. To what extent are clinicians accounting for these possible influences? If these data are overlooked, what are the potential risks in terms of misguiding diagnosis?

Given the present findings, we encourage clinicians conducting neurocognitive evaluations with NHB examinees to consider the following possibilities. Informants who are younger, female, more educated, have known the examinee longer, or live with the examinee may be more sensitive to (or more likely to perceive) functional changes and report poorer functioning as assessed via the FAQ. However, there are only some circumstances in which poorer reported functioning might be accompanied by poorer neuropsychological performance. Younger (vs. older) informants may provide reports of functioning that are more predictive of visuoconstructional ability and visual memory, although these reports may be at least partly influenced by younger informants’ expectations around the use of everyday technology to complete various daily activities. Additionally, male (vs. female) informants may provide reports of functioning that are more predictive of verbal memory, visuoconstructional ability and visual memory, and language. Given the robustness of the moderating effect of informant sex/gender on the association between informant reports of NHB participant functioning and participant performance on neuropsychological testing in our sample, we suspect that male informants’ reports of functioning are relatively accurate and valuable for predicting neuropsychological performance in NHB participants.

Limitations and Strengths

The present study is not free of limitations. Although the range of observed FAQ scores reflected the full range of possible scores on the measure (0–30 points), the distribution of FAQ scores in the present study was positively-skewed such that most of the sample had minimal to mild degrees of reported functional impairment, and this corresponded to a high proportion of participants being classified by NACC as having normal cognition versus MCI or dementia. We suspect that more robust associations between FAQ and neuropsychological test scores would be observed in a sample with a wider range of functioning, and that additional moderating effects of informant-related variables on these associations might be detected as well. Nevertheless, we believe the present findings hold merit given increasing evidence for mild alterations in daily functioning even during the early stages of ADRD (Medina, Heffernan, Holden, Simpson, & Bettcher, 2021). Related to the limitations surrounding positively-skewed FAQ scores is the issue of missing neuropsychological test data. An exploratory analysis showed that NHB participants with missing data on one or more neuropsychological measures were older, less educated, and more likely to be classified as having dementia compared to participants without missing data. Additionally, the NACC cohort is more highly educated overall relative to the general population. Thus, the present findings may be limited in the extent to which they generalize to the wider NHB population. Furthermore, the NACC UDS does not include data on informant cognition aside from the variable indicating whether there is any question regarding the reliability of their report of participant functioning (and in many cases, other factors aside from the informant’s cognition are likely contributing to the reliability of their report of their study partner’s [the participant’s] functioning). However, it is still important to acknowledge that discrepancies between informant reports of participant functioning and participant performance on neuropsychological testing can at least partly reflect inaccurate informant appraisals of participant functioning resulting from poor informant cognition. Clearly, the lack of data on informant cognition in the present study is a notable limitation and highlights an important issue for future studies to address. Taken together, additional research with more cognitively and functionally diverse NHB samples, in addition to data on informant cognition, is needed to further elucidate the influence of informant characteristics on reported functioning and associations with neuropsychological performance in NHB adults. Future studies should also examine effects of other informant characteristics (e.g., quality and quantity of time typically spent with participants, beliefs about aging and dementia, and mood) and sociodemographic influences (e.g., acculturation, marital status, household income, employment status) on associations between reported functioning and neuropsychological performance. In particular, the influence of informant mood requires more thorough investigation. As previously noted, relative to White caregivers of individuals with dementia, Black caregivers tend to view caregiving situations more favorably and optimistically (Farran et al., 1997; Potter et al., 2009; Raczynski et al., 1994). However, the extent to which these appraisals were directly related to caregiver mood was not examined in these prior studies. Additionally, in a study examining discrepancies between self and informant reports of depression (and apathy) among NHB, NHW, and Hispanic participants in the NACC cohort, Wyman and colleagues (2021) found that NHB participants self-reported depression less frequently than their NHW counterparts, and across racial/ethnic groups and cognitive status categories (normal cognition, impaired-not-MCI, MCI, dementia), informants were more likely to identify depression among participants than the participants were to self-report depression (Wyman et al., 2021). However, associations between self and informant ratings of mood and other aspects of participant functioning (e.g., reported daily functioning and neuropsychological performance) were not directly examined in this earlier work. Thus, the influence of informant mood, including depression, on informant reports of NHB participant functioning and on associations between reported functioning and participant performance on neuropsychological testing remains unclear. Finally, it is important to note that the present study was focused on NHB adults, and further investigation of the associations among informant characteristics, informant-reported participant functioning, and participant performance on neuropsychological testing in Black adults from other diverse cultural backgrounds is needed.

The present study has several strengths despite the aforementioned limitations. It is the first to comprehensively examine the influence of informant characteristics not only on informant reports of participant functioning, but on the degree of correspondence between subjective informant reports of participant functioning and objective participant performance on neuropsychological testing, and to focus this investigation on a NHB adult sample. Additionally, the NACC UDS contains a large battery of neuropsychological measures relative to other multisite studies of cognitive aging, rendering the database an ideal resource for addressing the aims of the present study. Of note, we were able to include a robust sample of NHB participants by refraining from adopting exclusion criteria that are often used in other studies of cognitive aging (e.g., history of certain medical conditions, psychiatric conditions, substance use, and medications) but often result in the over-exclusion and under-representation of NHB participants, who are already significantly under-recruited for this research.

Conclusion

To reiterate, multiple informant characteristics (age, sex/gender, education, relationship length, cohabitation status) influenced informant reports of NHB participant functioning, and a subset of these characteristics (age, sex/gender), in turn, moderated associations between reported functioning and participant performance on neuropsychological testing. Given the integral role of subjective informant reports of daily functioning within the context of neurocognitive disorder diagnosis, we implore clinicians conducting neurocognitive evaluations with NHB adults to acknowledge the diversity of informants, and the influence that their diverse backgrounds and perspectives likely have on their subjective ratings of daily functioning. Adopting more culturally-mindful and -appropriate approaches to optimizing the integrity of neurocognitive evaluations is an important step toward building trust between NHB adults and healthcare professionals providing these services. Furthermore, corresponding improvements in diagnostic accuracy and timeliness as well as service access and usage may help to reduce ADRD-related disparities in this population.

Funding

This work was supported by the NIH. LVG is supported by P30 AG059299. The NACC database is funded by NIA/NIH Grant U24 AG072122. NACC data are contributed by the NIA-funded ADCs: P50 AG005131 (PI James Brewer, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG005138 (PI Mary Sano, PhD), P50 AG005142 (PI Helena Chui, MD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005681 (PI John Morris, MD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG008051 (PI Thomas Wisniewski, MD), P50 AG008702 (PI Scott Small, MD), P30 AG010124 (PI John Trojanowski, MD, PhD), P30 AG010129 (PI Charles DeCarli, MD), P30 AG010133 (PI Andrew Saykin, PsyD), P30 AG010161 (PI David Bennett, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG013846 (PI Neil Kowall, MD), P30 AG013854 (PI Robert Vassar, PhD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P30 AG019610 (PI Eric Reiman, MD), P50 AG023501 (PI Bruce Miller, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P30 AG028383 (PI Linda Van Eldik, PhD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P30 AG035982 (PI Russell Swerdlow, MD), P50 AG047266 (PI Todd Golde, MD, PhD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG049638 (PI Suzanne Craft, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG066546 (PI Sudha Seshadri, MD), P20 AG068024 (PI Erik Roberson, MD, PhD), P20 AG068053 (PI Marwan Sabbagh, MD), P20 AG068077 (PI Gary Rosenberg, MD), P20 AG068082 (PI Angela Jefferson, PhD), P30 AG072958 (PI Heather Whitson, MD), P30 AG072959 (PI James Leverenz, MD).

Data Availability

Raw data were generated and provided by National Alzheimer’s Coordinating Center staff upon approval of a data request submitted by the corresponding author [LVG]. Derived data supporting the findings of this study are available from the corresponding author [LVG] upon request.

Conflict of Interest

The authors have no conflicts of interest to report.

Acknowledgements

We thank all NACC participants for their contributions to this work.

Contributor Information

Lisa V Graves, Psychology Department, California State University San Marcos, San Marcos, CA, USA.

Sharon Hamill, Psychology Department, California State University San Marcos, San Marcos, CA, USA.

Maiya Larry, Psychology Department, California State University San Marcos, San Marcos, CA, USA.

Destiny Williams, Department of Special Education, Rehabilitation, and Counseling, California State University San Bernardino, San Bernardino, CA, USA.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Raw data were generated and provided by National Alzheimer’s Coordinating Center staff upon approval of a data request submitted by the corresponding author [LVG]. Derived data supporting the findings of this study are available from the corresponding author [LVG] upon request.

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