Advance Care Planning for Adult Children of Parents Showing Signs of Early- to Mid-Stage Dementia

Rachel Faye Bloom, Fordham University


While clinical guidelines indicate that people showing signs of cognitive decline should engage in Advance Care Planning (ACP) while they still have decision-making capacity, too often this opportunity for clarifying values and treatment preferences is missed among patients and their families. This study explored the facilitators and barriers to ACP among adult children of parents showing signs of early- to mid-stage dementia, given the paucity of empirical data on factors influencing how this planning process begins for families that are grappling with cognitive decline. Participants (N = 315) completed an anonymous online questionnaire with items on demographics, stage of cognitive decline, family history, relationship quality, and psychological, physical, and financial burden, with ACP engagement serving as a primary outcome measurement. Positive relationship quality was tested as both a predictor and as a potential moderator of ACP engagement; it was found to play a significant role as a predictor of ACP engagement (r = .349, p < .01) but did not significantly moderate the relationship between the three measured types of burden and ACP engagement. This lends support to the theoretical conceptualization of relationship quality as a predictor rather than moderator of ACP engagement among children of people experiencing cognitive decline. Financial burden weakly and positively predicted ACP engagement (r = .123, p <.05), while both psychological burden (- .614, p < .01) and financial burden (-.290, p < .01) negatively and significantly predicted relationship quality; physical burden was not significantly predictive of other variables. This study validates the use of the ACP Engagement Survey (ACPES) adapted for surrogates among children of people experiencing cognitive decline, and contributes to a scarce literature on the impact of relationship quality on ACP engagement. Future research should explore longitudinal changes in relationship quality and ACP engagement as cognitive decline progresses, as well as the role of self-efficacy in ACP.

Subject Area

Psychology|Aging|Medical Ethics|Individual & family studies|Health care management

Recommended Citation

Bloom, Rachel Faye, "Advance Care Planning for Adult Children of Parents Showing Signs of Early- to Mid-Stage Dementia" (2021). ETD Collection for Fordham University. AAI28652597.