Caregivers' Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship.

Background and objectives: People living with dementia experience progressive functional decline and increased dependence on caregivers. This study examined the influence of caregivers' dementia health literacy on perceptions of medical care preferences and advance care planning (ACP) in people living with dementia.

Research design and methods: This analysis used data from a cross-sectional survey, "Care Planning for Individuals with Dementia," administered nationwide by Alzheimer's Disease Centers. We conducted binary, ordinal, and multinomial logistic regression.

Results: On average, surveyed caregivers (n = 431) were 78.3 years, had 16 years of education, and were mainly White (88.5%). Most lived with (76.8%) and were the designated healthcare proxy (95.1%), with high dementia knowledge scores (mean = 8.4/10). As caregivers' dementia knowledge scores increased, they were 1.27 times more likely (p = .02) to endorse comfort care. Caregivers with greater knowledge about severe dementia were less likely to need further treatment preference-related discussions (knowing a lot: odds ratio [OR] = 0.17, p < .001; knowing some things: OR = 0.37, p = .006). Caregivers live apart from patients were 2.71 times more likely to know about such discussions (p < .001). Caregivers of people in earlier stages endorsed greater needs for further conversations with clinicians (no impairment and mild cognitive impairment [MCI]: OR = 7.38, p = .002; mild impairment: OR = 5.32, p = .005) and their care recipients (no impairment and MCI: OR = 5.24, p = .02).

Discussion and implications: These findings highlight the role of dementia-specific education in ACP discussions among people living with dementia, caregivers, and healthcare clinicians. These findings are important because evidence suggests that ACP may promote quality of life, reduce iatrogenic harm, minimize healthcare overutilization, and alleviate care-related burdens.