Personal Values in Dementia Experience, Caregiving, and Research

PROJECT SUMMARY/ABSTRACT Dementia caregivers, clinicians, and researchers can experience deep ethical conflicts when people with dementia express strong preferences about personal care, finances, clinical management or research participation that depart from values that they had previously espoused. As values are central

to relationships, such changes can also be destabilizing to caregivers’ own senses of self and relationships with care recipients. The overall aim of this application is to leverage rich existing interdisciplinary collaborations including expertise in clinical neurology, philosophy, social science and

psychology to address the unique problems posed by dementia’s progressive effects on fundamental aspects of personality and judgment. Utilizing key conceptual links between valuing and self-reflection, the proposed work is organized around three specific aims: 1) Examine self-narratives about values and

change among people with different dementia syndromes; 2) Assess how care recipients’ changing values and self-narratives impact caregivers and caregiving relationships; and 3) Study longitudinal change in values of people with dementia and in caregiver responses. Under the first aim, in-depth qualitative interviews will be conducted with people who have early Alzheimer’s disease and

frontotemporal dementia, inviting them to reflect on their core values and whether they have been changed in illness; responses will be analyzed alongside neuropsychological data from these participants to aid in interpretation. For the second aim, caregivers will be interviewed about experiences in caregiving in the context of changed values or changed expressions of values in people

with dementia; responses will be linked to an established measure of caregiver burden. In the third aim, dynamic changes in values will be elicited in longitudinal interviews at 1.5- and 3-years’ follow-up, as the passage of time may allow for healthy adaptation but also dementia progression necessitating

further changes in perceptions of values and relationships. Alongside these investigations, the proposal includes plans for broad engagement with scholarly communities in multiple disciplines to advance inquiry into valuing in dementia. The approach is innovative, advancing theoretical concepts in dementia

care and caregiving, and utilizing philosophical theory to inform new approaches to data collection, analysis, and the linkage of social and neurobiological phenomena. The proposed research is significant as it will advance both theory and evidence regarding common challenges in decision-making that are

uniquely problematic in dementia, which are implicated in recently-proposed legal and ethical reforms to bioethical/legal constructs such as supported decision-making; and it will extend research on caregiving challenges to more deeply personal aspects of caregivers’ relationships and identities.