Deficits awareness in persons with mild cognitive impairment and family care partners.
Keywords: mild cognitive impairment, dyadic appraisal, concordance, family care partner, dementia knowledge
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.
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.
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).
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.
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.
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).
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.
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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,
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: firstname.lastname@example.org
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|
|Date:||Dec 1, 2016|
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