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Deficits awareness in persons with mild cognitive impairment and family care partners.

Introduction: An emerging perspective of dyadic coping with chronic illness argues that concordance in the appraisal of illness is crucial for collaborative attempts at seeking information, making treatment decisions, and planning for long-term management of the illness and psychological and physical adjustments of both the care provider and care recipient. The present study examined whether persons with mild cognitive impairment (PwMCIs) and their family care partners (CPs) exhibited concordance in their awareness of deficits in the PwMCIs. Furthermore, this study explored the differences in concordance based on the relationship of the informant to the PwMCI, specifically spouse CP (SCP) versus adult child CP (ACCP), Method: PwMCI-SCP pairs (n = 55) and PwMCI-ACCP (n = 14) pairs provided reports on their awareness of PwMCI's functional and cognitive deficits. CPs also reported their knowledge about dementia. Results: SCPs, but not ACCPs, reported greater deficits in everyday activity than PwMCIs' self-reports. Additionally, compared to SCPs, ACCPs had more accurate knowledge about dementia, and their perception of PwMCI deficits corresponded more closely to PwMCI's self-perception. Discussion: These findings demonstrate that concordance in awareness of PwMCI deficits varies across functional and cognitive areas and types of dyads. The results also highlight the importance of mild cognitive impairment-related education and support programs for care dyads to strengthen concordance, which is likely an important underpinning for effective coping as the illness progresses.

Keywords: mild cognitive impairment, dyadic appraisal, concordance, family care partner, dementia knowledge

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Mild cognitive impairment is characterized by minor problems with memory and other cognitive abilities that are noticeable to the self and others. These deficits are detectable on cognitive tests, yet they do not interfere with activities of daily living (Petersen et al., 2014). Typically, the person with MCI (PwMCI) or an informant, such as a spouse or an adult child, who takes on the family care partner (CP) role in supporting the PwMCI and expresses concerns about changes in the cognitive abilities of the PwMCI. Cognitive testing is then undertaken to confirm the MCI diagnosis (Petersen et al., 2014). Considerable research has studied PwMCIs' unawareness of deficits (anosognosia), stirring controversy over whether PwMCIs' subjective memory complaints are accurate or useful (Vogel et al., 2004) and diverting attention from the study of PwMCIs' and CPs' illness perception (cf. Roberts, Clare, & Woods, 2009). Understanding how PwMCIs and their CPs, as dyads, perceive mild cognitive impairment is important because disparities in illness appraisal by care recipients and CPs--regardless of the accuracy of reports--may have negative consequences for psychological and physical outcomes of both parties. Conversely, a shared understanding of illness-related deficits may foster collaborative information seeking, joint planning for long-term illness management, and better adjustment of families coping with mild cognitive impairment (Berg & Upchurch, 2007).

Several factors may affect CPs' illness perceptions. Previous research has shown that CPs' age, health, and stress may bias their ratings of illness severity (Clare et al., 2012). Because spouse CPs (SCPs) are older, may have health issues, and experience greater care demands due to coresidence with PwMCIs, it is likely they will be less concordant with PwMCIs' self-rating of deficits (more biased) than are adult child CPs (ACCPs). Other researchers have found that CPs who are more knowledgeable about dementia have reduced expectations of PwMCIs' cognitive and functional abilities (Graham, Ballard, & Sham, 1997). Furthermore, spouses and individuals with less education have less knowledge about cognitive impairment (Werner, 2001). We therefore hypothesize that SCPs may perceive PwMCIs' cognitive deficits as more severe and less concordant with PwMCIs' perceptions than may ACCPs. Thus, the primary aim of this study was to advance understanding of the extent to which PwMCIs and CPs agree on their perceptions of PwMCIs' deficits. The second aim was to examine which informant would have higher agreement with PwMCIs' assessment of their deficits, specifically whether ACCPs were more concordant than SCPs.

Method

Procedure

Adults (aged 60+ years) with a clinical assessment of MCI in the prior 6 months were recruited through six memory clinics. Each PwMCI identified one CP. and data were collected in three waves. The Institutional Review Boards of Virginia Tech and the memory clinics approved the study (see Savla, Roberto, Blieszner, Cox, & Gwazdauskas, 2011, for study details). In all, 125 PwMCI-CP dyads participated in the first wave. Seventy-four PwMCIs and 85 CPs participated in the second wave, yielding response rates of 59% and 68%, respectively. Forty-three PwMCIs and 52 CPs participated in the third wave, yielding response rates of 34% and 42%, respectively.

Analytical Sample

Because the Deficit Awareness Scale (DAS), the key study variable, was added late in the 1st wave, it was administered to only 16 dyads. Participants who did not provide information on DAS in the first wave did so in a subsequent wave. Because PwMCIs' Mini-Mental Status Exam (MMSE; Folstein, Folstein, & McHugh, 1975) and DAS scores did not differ among participants who provided DAS information in the first wave compared with the subsequent wave, the Wave 1 sample was supplemented with data from participants from the later wave to increase the effective sample size. Thus, the analytic sample included 69 PwMCI-CP dyads from 125 families (55 PwMCI-SCP and 14 PwMCI-ACCP pairs; 55% response rate).

Measures

Dementia Knowledge Questionnaire (DKQ). The 19 DKQ items assess rudimentary and epidemiological knowledge, potential causes, and symptoms of dementia (Graham et al., 1997). CPs reported their knowledge regarding dementia in the 1st wave, and a percentage of correct answers (1 vs. 0) was calculated. DAS. The 16-item DAS includes four items measuring awareness of deficits in each of the four areas: remote memory, recent memory, attention, and everyday activity (Green, Goldstein, Sirockman, & Green, 1993). Both PwMCIs and CPs reported their perception of PwMCIs' abilities to perform these cognitive and functional tasks on a 5-point Likert Scale (1 = very> good, 5 = very poor; see Table 2 for Cronbach's alpha). Total DAS and four subscale scores were calculated.

Analysis Plan

Paired sample r-tests detected mean differences in DAS between CPs and PwMCIs in the entire sample and SCP subsample. The Wilcoxon signed-rank test was used to examine mean rank differences between ACCP and PwMCI reports because of the small sample size. We used intraclass correlations to assess concordance between CPs' and PwMCIs' DAS scores and compared concordance strengths between dyad types with Fisher r-to-z tests. Analyses were conducted with IBM's SPSS software (Version 23) using pairwise deletion for missing data from dyads.

Results

Demographic information for the analytical sample appears in Table 1. The majority of participants were White; less than one third were African American. Education and income levels varied widely. Approximately 80% of PwMCIs identified their spouses as their CPs, and the majority of them lived in the same household. Of the PwMCI-ACCP dyads, 36% coresided. The average MMSE score in the analytic sample was 25.50 (SD = 3.99). On average, ACCPs had more knowledge about dementia than SCPs (M = 67% correct answers for ACCPs vs. 52% for SCPs), r(62) = 1.76, p = .05 (one-tailed). The top panel of Table 2 provides descriptive statistics on DAS score and each of the four area scores for the entire sample. On average, both CPs and PwMCIs reported awareness of modest deficits in each of the four areas. Mean scores for the total DAS, remote memory, recent memory, and attention did not differ. However, CPs perceived significantly higher deficits in everyday activity than did PwMCIs. Assessing SCPs and ACCPs separately (Table 2, middle and bottom panels), results for SCP dyads followed the same pattern as for the entire sample, but ACCP reports and PwMCI reports did not differ significantly on the overall DAS or any of the four area scores.

Table 3 displays concordance between CPs' and PwMCIs' awareness of memory-loss symptoms. Concordance between CP and PwMCI reports for the entire sample (first row) were moderate for remote memory and modest for recent memory, attention, and everyday activity. Concordance between SCP and PwMCI reports (second row) were similar to those for the entire sample. Concordance in PwMCI-ACCP dyads (third row) was much stronger than in SCP dyads on total awareness, awareness of attention, and everyday activity. No differences in concordance between the two dyads reached statistical significance (fourth row), possibly due to low statistical power, given the small sample size (fifth row).

Discussion

In this study, PwMCIs and CPs had modest to moderate concordance in the rating of cognitive and functional deficits associated with MCI. Overall, agreement about deficits was particularly strong on PwMCI's remote memory and everyday activities compared with other areas, yet concordance differed based on the PwMCI--CP relationship. Previous research suggests that concordance in the appraisal of illness, especially as it affects everyday life, is crucial for collaborative attempts at seeking information. making treatment decisions, and planning for long-term illness management (Berg & Upchurch, 2007). Thus, the ability to cope effectively with stressors surrounding chronic illness may be enhanced when appraisals of the condition by the CP and the PwMCI correspond closely.

Although the majority of SCP dyads core-sided, SCPs had lower concordance with the PwMCIs' ratings on their ability to carry out everyday activities (e.g., balance the checkbook) compared with ACCPs' ratings. A possible explanation is that SCPs may be biased because of their feelings of anxiety and distress and therefore may appraise PwMCIs' functioning as poorer than PwMCIs (Clare et al., 2012). The ACCPs also had slightly higher scores on the DKQ than did the SCPs and held a less severe and more concordant view of the illness. This finding is consistent with other studies, which have found that lower illness coherence can exacerbate emotional distress and bias one's perception of the severity of illness (Lingler, Terhorst, Schulz, Gentry, & Lopez, 2016). Alternatively, because maintaining autonomy and control is important for most older adults, PwMCIs may have rated their performance of everyday activities as more positive than SCPs (Lingler et al., 2016).

The small sample size, particularly the number of PwMCI-ACCP dyads, limits the generalizability of the findings. Nevertheless, this study shows that ACCPs have slightly more knowledge of memory-related deficits than SCPs, which may partly explain why they demonstrated higher concordance in perception of deficits with PwMCIs than SCPs. These findings highlight the importance of raising awareness and knowledge of mild cognitive impairment symptoms in health-promotion programs, to strengthen concordance between care dyads, with the potential for lessening emotional distress in families. Future research using actor-partner interdependence models, by relationship dyad, should evaluate whether concordance between CPs' and PwMCIs' appraisals of illness is related to better coping and illness management at different stages of dementia.

http://dx.doi.org/10.1037/fsh0000230

References

Berg. C. A.. & Upchurch, R. (2007). A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychological Bulletin, 133, 920-954. http://dx.doi.org/ 10.1037/0033-2909.133.6.920

Clare. L., Nelis, S. M., Martyr, A., Roberts, J., Whitaker, C. J., Markova, I. S., ... Morris, R. G. (2012). The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: Testing a biopsychosocial model. International Journal of Geriatric Psychiatry, 27, 167-177. http://dx .doi.org/10.1002/gps.2705

Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). "Mini-mental state": A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198. http://dx.doi.org/10.1016/00223956(75)90026-6

Graham, C., Ballard, C., & Sham, P. (1997). Carers' knowledge of dementia, their coping strategies and morbidity. International Journal of Geriatric Psychiatry, 12, 931-936. http://dx.doi.org/10 .1002/(SICI) 1099-1166(199709) 12:9<931:: AIDGPS666>3.0.CO;2-8

Green, J., Goldstein, F. C., Sirockman, B. E., & Green, R. C. (1993). Variable awareness of deficits in Alzheimer's disease. Cognitive and Behavioral Neurology, 6, 159-165.

Lingler, J. H., Terhorst, L., Schulz, R., Gentry, A., & Lopez, O. (2016). Dyadic analysis of illness perceptions among persons with mild cognitive impairment and their family members. The Gerontologist, 56, 886-895. http://dx.doi.org/10.1093/ geront/gnv029

Petersen, R. C., Caracciolo, B.. Brayne, C., Gauthier. S., Jelic, V., & Fratiglioni, L. (2014). Mild cognitive impairment: A concept in evolution. Journal of Internal Medicine, 275, 214-228. http://dx.doi .org/10.1 Ul/joim. 12190

Roberts, J. L., Clare, L., & Woods, R. T. (2009). Subjective memory complaints and awareness of memory functioning in mild cognitive impairment: A systematic review. Dementia and Geriatric Cognitive Disorders, 28, 95-109. http://dx.doi.org/ 10.1159/000234911

Savla, J., Roberto, K. A., Blieszner, R., Cox, M., & Gwazdauskas, F. (2011). Effects of daily stressors on the psychological and biological wellbeing of spouses of persons with mild cognitive impairment. The Journals of Gerontology Series B, Psychological Sciences and Social Sciences, 66, 653-664. http://dx.doi.org/10.1093/geronb/ gbr041

Vogel, A., Stokholm, J., Gade, A., Andersen, B. B., Hejl, A. M., & Waldemar, G. (2004). Awareness of deficits in mild cognitive impairment and Alzheimer's disease: Do MCI patients have impaired insight? Dementia and Geriatric Cognitive Disorders, 17, 181-187. http://dx.doi.org/10.1159/ 000076354

Werner, P. (2001). Correlates of family caregivers' knowledge about Alzheimer's disease. International Journal of Geriatric Psychiatry, 16, 32-38. http://dx.doi.org/l 0.1002/1099-1166(200101)16: l<32::AID-GPS268>3.0.CO;2-2

Received January 7, 2016

Revision received July 25, 2016

Accepted August 4, 2016

Jyoti Savla, PhD and Zhe Wang, PhD

Virginia Tech, Blacksburg, Virginia

Karen A. Roberto, PhD

Virginia Tech, Blacksburg, Virginia and Virginia

Tech Carilion School of Medicine, Roanoke,

Virginia

Rosemary Blieszner, PhD

Virginia Tech, Blacksburg, Virginia

This article was published Online First September 29, 2016.

Jyoti Savla, PhD, Center for Gerontology and Department of Human Development, Virginia Tech, Blacksburg, Virginia; Zhe Wang. PhD, Center for Gerontology, Virginia Tech, Blacksburg, Virginia; Karen A. Roberto, PhD, Center for Gerontology, Department of Human Development, and Institute for Society, Culture, and Environment, Virginia Tech, Blacksburg, Virginia and Department of Internal Medicine and Department of Psychiatry and Behavioral Medicine. Virginia Tech Carilion School of Medicine, Roanoke. Virginia; Rosemary Blieszner, PhD, Center for Gerontology and Department of Human Development, Virginia Tech, Blacksburg, Virginia.

This work was supported by the Alzheimer's Association (Grants IIRG-03-5926 and IIRG-07-59078). The authors gratefully acknowledge participation of the Center for Healthy Aging in Roanoke, Virginia; the Eastern Virginia Medical School's Glennan Center for Geriatrics and Gerontology in Norfolk, Virginia; the Veterans Affairs Medical Center in Salem, Virginia; the University of Chicago's Center for Comprehensive Care and Research on Memory Disorders in Chicago, Illinois; the Indiana University Center for Aging Research's Regenstrief Institute in Indianapolis, Indiana; and the Emory University Alzheimer's Disease and Related Disorders Memory Clinic in Atlanta, Georgia; and the assistance of Martha Anderson, Carlene Arthur, Nancy Brossoie, William Dale, Gail Evans, Stefan Gravenstein, Kye Y. Kim, Greg Sachs, and Karen Wilcox.

Correspondence concerning this article should be addressed to Jyoti Savla, Center for Gerontology, Virginia Tech, 230 Grove Lane (0555), Blacksburg, VA 24061. E-mail: jsavla@vt.edu
Table 1
Sociodemographic Characteristics of PwMCIs and CPs

                            PwMCI           SCP            ACCP
Variable and category      (n = 69)       (n = 55)       (n = 14)

Age (in years),         75,25 (7.18)   70.69 (7.08)   52.93 (9.84)
  M (SD) (a)
Sex, n (%)
  Female                   17 (25)        49 (89)        12 (86)
Race, n (%)
  White                    48 (70)        47 (86)         5 (36)
  African American         19 (28)         8 (15)         9 (64)
  Other                     2 (3)          0 (0)          0 (0)
Ethnicity, n (%)
  Hispanic/Latino           1 (1)          0 (0)          0 (0)
Education, n (%)
  High school/GED          32 (46)        21 (38)         2 (14)
    and below
  Vocational college        4 (6)          7 (13)         3 (21)
  College                  23 (33)        18 (32)         5 (36)
  Graduate/                10 (15)         9 (16)         4 (29)
    professional
    school
Monthly income, n (%)
  <$1,000                   4 (6)          4 (8)          1 (8)
  $1,000-51,999            18 (26)        15 (31)         0 (0)
  $2,000-$3,999            18 (26)        16 (33)         4 (33)
  $4,000-$6,999            13 (19)         9 (18)         2 (17)
  >$7,000                   9 (13)         5 (10)         5 (42)
Dementia Knowledge
    Questionnaire,
    n (%)
  <25% correct                             5 (9)          0 (0)
  25-50% correct                          21 (40)         2 (18)
  50-75% correct                          17 (32)         6 (55)
  >75% correct                            10 (19)         3 (27)
MMSE, M (SD)            25.50 (3.99)
CP and PwMCI live                         52 (95)         5 (36)
  together, n (%)

Note. GED = General Educational Development test; MMSE =
Mini-Mental Status Exam; CP = family care partner; PwMCI =
person with mild cognitive impairment; SCP = spouse care
partner; ACCP = adult child care partner.

(a) At Wave 1.

Table 2 Descriptive Statistics and Paired-Sample Mean
Comparison Tests on the Deficits Awareness Scale

                                  Overall           Remote memory

Variable                       CP       PwMCI      CP       PwMCI

Entire sample

n                              61        61        69        69
Cronbach's [alpha]             .86       .87       .74       .68
M                             2.56      2.46      2.01      2.17
SD                             .66       .56       .79       .70
Paired sample t(df)              1.15 (60)           -1.75 (68)

Spouse CP

n                              50        50        55        55
M                             2.57      2.43      2.02      2.17
SD                             .62       .53       .80       .70
Paired sample t(df)              1.37 (49)           -1.44 (54)

Adult child CP

n                              11        11        14        14
M                             2.54      2.60      1.98      2.18
SD                             .85       .69       .79       .73
Wilcoxon signed rank test         -.53                -.89

                                Recent memory       Attention

Variable                       CP       PwMCI      CP       PwMCI

Entire sample

n                              69        69        67        67
Cronbach's [alpha]             .83       .86       .72       .69
M                             3.27      3.25      2.54      2.41
SD                             .95       .82       .80       .65
Paired sample t(df)               .10 (68)            1.27 (66)

Spouse CP

n                              55        55        54        54
M                             3.33      3.19      2.52      2.38
SD                             .91       .82       .79       .65
Paired sample t(df)                 .98 (54)            1.07 (53)

Adult child CP

n                              14        14        13        13
M                             3.03      3.52      2.68      2.53
SD                            1.07       .80       .85       .65
Wilcoxon signed rank test           -1.73               -.58

                              Everyday activity

Variable                       CP       PwMCI

Entire sample

n                              61        61
Cronbach's [alpha]             .72       .77
M                             2.61      2.11
SD                             .99       .82
Paired sample t(df)            3.89 (60) ***

Spouse CP

n                              50        50
M                             2.60      2.08
SD                             .89       .74
Paired sample t(df)           3.75 (49) ***

Adult child CP

n                              11        11
M                             2.68      2.26
SD                            1.40      1.15
Wilcoxon signed rank test         -1.05

Note. CP = family care partner; PwMCI = person with mild
cognitive impairment.

*** p < .001.

Table 3
Intraclass Correlations Showing Concordance Between CP and
PwMCI Reports on the Deficits Awareness Scale

                                             Remote         Recent
                                Overall      memory         memory

Variable                     n       r     n       r      n      r

PwMCI and CP, entire
  sample                    61     .29 *   69   .50 ***   69   .24 *
PwMCI and spouse CP         50     .19     55   .48 ***   55   .25
PwMCI and adult child
  CP                        11     .60     14   .57 *     14   .33
Fisher r-to-z
  statistic  comparing
  PwMCI and  spouse CP         -1.31
  versus adult child CP     ([dagger])      -.38           -.26
Effect size (Cohen's q)         .50          .13            .09

                                         Everyday
                           Attention     activity

Variable                   n      r     n      r

PwMCI and CP, entire
  sample                   67   .30 *   61   .39 **
PwMCI and spouse CP        54   .23     50   .30 *
PwMCI and adult child
  CP                       13   .54     11   .58
Fisher r-to-z
  statistic  comparing
  PwMCI and  spouse CP
  versus adult child CP     -1.07        -.92
Effect size (Cohen's q)       .37         .36

Note. Interpretation for Cohen's q: <.1 = negligible effect;
.1 to .3 = small effect; .3 to .5 = medium effect; >.5 =
large effect.

([dagger]) p <.10. * p <.05. ** p <.01. *** <.001.
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Title Annotation:BRIEF REPORT
Author:Savla, Jyoti; Wang, Zhe; Roberto, Karen A.; Blieszner, Rosemary
Publication:Families, Systems & Health
Article Type:Report
Date:Dec 1, 2016
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