Caregiving Burdens in Aphasic Dementia and the Relationship to Communication Challenges

Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language are the primary and persistent symptom, and severely limit participation in everyday activities and family conversations. PPA is also associated with high caregiving burden. Few studies have examined the relationship between conversation difficulties and caregiving burdens. We tested the hypothesis that the severity of care partner (CP) perceived conversation difficulties predicts caregiving burdens. Method: A mediation analysis focusing on the Baron-Kenny approach was conducted using baseline data from 78 CPs (62% female) enrolled in the Communication Bridge^TM-2 randomized control trial of a speech-language intervention for mild to moderate PPA. Measures included the Conversation Difficulties subscale of the Perception of Conversation Index-Dementia Alzheimer’s Type (PCI-DAT) and the subscales of Montgomery Burden Interview (MBI), namely objective burden subscale (perceived infringement on tangible aspects of life), subjective demand subscale (perception that the dependent person is overly demanding), and subjective stress subscale (perception of emotional impact). Higher ratings indicate higher burden and greater conversation difficulties. Result: CPs had a mean age of 64.5 years (SD = 10.76), education level of 16.2 years (SD = 2.77), and a relationship duration with the PPA participant of 38.6 years (SD = 15.29). Eighty-six percent were spouses, 5% were adult children, and 9% were friends or siblings. CPs endorsed a broad range of burden severity with a mean objective burden score of 9.29/30 (Range = 6 to 26; SD = 4.01), subjective demand burden score of 5.81/15 (Range = 5 to 12; SD = 1.41), and subjective stress burden score of 8.43/20 (Range = 5 to 16; SD = 2.72) as well as a range of perceive conversation difficulties (M = 42.34/154, Range = 6 to 105, SD = 22.88). Higher conversation difficulties were associated with higher ratings of caregiving burden for objective burden (p < 0.001) and subjective stress burden (p = 0.010). Significant mediating variables included activities of daily living and CP depression scores. Conclusion: The current study shows an association between both subjective and objective caregiving burden and conversation difficulties. Given this relationship, it will be important to determine whether interventions that successfully address conversation difficulties may also decrease caregiving burden.