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Published on: June 6, 2020
Care Partner Perceptions of Conversation Difficulties, Strategy Use, and Psychosocial Impacts in Primary Progressive
Angela C Roberts1,2, Matthew Bona3, Emily Rogalski4
1School of Communication Sciences and Disorders, Western University, London, ON N6G 1H1, Canada.
Background:
Primary progressive aphasia (PPA) disrupts communication and increases caregiving burden. Despite their critical role in supporting communication, objective data characterizing communication partners' perceptions of conversation difficulties, strategies, and psychosocial impacts across PPA subtypes remain scarce. This study characterizes these experiences using the Perception of Conversation Index-Dementia of the Alzheimer's Type (PCI-DAT) in a well-characterized PPA sample.
Methods:
Baseline PCI-DAT data from 95 communication partners of individuals with PPA enrolled in the Communication Bridge-2 (CB2) randomized controlled trial were analyzed. Descriptive analyses examined item- and subscale-level responses across five PCI-DAT subscales. Kruskal-Wallis tests were used to compare subscale total scores across agrammatic (PPA-G, n = 26), logopenic (PPA-L, n = 43), and semantic (PPA-S, n = 26) PPA subtypes.
Results:
Communication partners endorsed a wide range of conversation difficulties, with using the correct word and pausing/searching for words being the most frequently and severely rated items. Across subtypes, partners reported frequent use and perceived helpfulness of compensatory actions, both their own and those used by the person with PPA. PPA-S care partners reported directionally higher emotional burden (Subscale 4: M = 24.46, SD = 10.96) and practical challenges (Subscale 5: M = 19.27, SD = 11.61). No statistically significant between-subtype differences emerged for any subscale (all p-values > 0.12, ε2 = 0.030-0.044). Within-subtype variability was substantial across all subscales.
Conclusions:
These findings characterize the breadth and heterogeneity of communication partner-perceived conversation difficulties and their psychosocial impacts in mild-to-moderate PPA. Substantial within-subtype variability supports individualized assessment and intervention planning.
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