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Evaluating everyday preferences assessment over time between people with cognitive impairment and their care partners
Author(s) -
Wilkins James M,
Okereke Olivia I
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.042285
Subject(s) - psychology , concordance , proxy (statistics) , dementia , cognition , cognitive impairment , developmental psychology , aged care , preference , clinical psychology , everyday life , clinical dementia rating , gerontology , psychiatry , medicine , statistics , disease , mathematics , pathology , political science , law
Background As cognitive impairment progresses, people with cognitive impairment and dementia increasingly rely on surrogate decision‐makers for everyday activities. Yet, little is known about concordance over time on assessment of everyday preferences between persons with cognitive impairment and their care partners, acting as proxies. Method The sample included 44 dyads of persons with cognitive impairment (Clinical Dementia Rating Scale ≥ 0.5) and their care partners. We used the Preferences for Everyday Living Inventory (PELI) to assess preferences for activities and lifestyle choices among persons with cognitive impairment. The PELI was concurrently but separately administered to care partners, who answered as proxies. Assessments were completed at baseline and again approximately one year later. Paired sample t‐tests were used to assess for changes in repeat measures as well as to estimate differences in preference assessment between self‐ratings of persons with cognitive impairment and proxy‐ratings of care partners at baseline and one‐year follow‐up. Result Our previous factor analysis of the 55‐item PELI identified four factors: autonomous choice, social engagement, personal growth, and keeping a routine. Within each factor of the PELI, there appeared to be consistency in self‐ratings for persons with cognitive impairment and proxy‐ratings by care partners between baseline and annual follow‐up (paired t‐test, p‐value > 0.05; Pearson correlation, r > 0.7). Comparing self‐ratings from persons with cognitive impairment and proxy‐ratings by their care partners, however, there was significant discrepancy for preferences related to “social engagement” (e.g., regular contact with family, meeting new people, volunteering) at baseline and one‐year follow‐up (paired t‐test, p‐value < 0.05). There did not appear to be significant differences by paired t‐test (p‐value > 0.05) with respect to the raw change scores from baseline and one year‐follow within each PELI factor. Conclusion This study yields new insights regarding the stability of everyday preferences for persons with cognitive impairment over time as well as apparent stability in areas of significant discrepancy between self‐ratings of persons with cognitive impairment and the proxy‐ratings of care partners.