Improving advance care planning by persons living with dementia using narrative video games

About This Grant

ABSTRACT An estimated 6.9 million Americans 65 years and older live with Alzheimer’s disease and related dementias (“dementia”). Advance Care Planning (ACP) conversations allow individuals to communicate their goals, values, and preferences to family members and healthcare providers. In the absence of these conversations, care partners must independently make difficult decisions to provide or to withhold treatments. Constructing an advance care plan requires individuals to predict their values, goals, and treatment preferences during future health states. Often, they use heuristics (i.e., mental shortcuts or intuitive judgments) to make these decisions. Unfortunately, several factors contribute to poor calibration of heuristics in advance care planning, with amplification in dementia. First, people inaccurately predict how they will feel in future health states (affective forecasting biases). Second, lack of knowledge of disease trajectory coupled with the insidious nature of dementia progression obscures recognition of terminal stages of the disease (representativeness biases). The objective of this application is to improve advance care planning by addressing these two sets of biases. We propose to develop a narrative video game that will provide insight into ways that people may adapt to the cognitive and functional limitations of dementia (mitigating affective forecasting biases) and into the trajectory of dementia (mitigating representativeness biases). We will test the feasibility of delivering the intervention in a pilot trial by recruiting a local sample of people at elevated risk of developing dementia and their care partners (N=60 dyads), randomizing them to receive the intervention or an active control, and then evaluating the fidelity of intervention delivery, acceptability, fidelity of intervention receipt, and fidelity of intervention enactment. This proposal advances the NIA's priorities to improve advance care planning among older adults with dementia and follows the NIH's goal of applying a mechanistic approach to the development of behavioral interventions.