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Principal Investigator: Winston Chiong
Organization: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Fiscal Year: 2024
Award: $2,374,537
Funding agency: National Institute on Aging
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.
Terms: <AD dementia><AD related dementia><ADRD><Active Follow-up><Address><Advance Care Planning><Advance Health Care Planning><Advance Healthcare Planning><Affect><Alzheimer Type Dementia><Alzheimer disease dementia><Alzheimer sclerosis><Alzheimer syndrome><Alzheimer's><Alzheimer's Disease><Alzheimer's and related dementias><Alzheimer's disease and related dementia><Alzheimer's disease and related disorders><Alzheimer's disease or a related dementia><Alzheimer's disease or a related disorder><Alzheimer's disease or related dementia><Alzheimer's disease related dementia><Alzheimers Dementia><Amentia><Attitude><Behavioral><Bioethicist><Bioethics Consultants><Brain><Brain Nervous System><Budgets><Burden on their caregivers><Care Givers><Caregiver Burden><Caregivers><Caring><Clinical><Clinical Management><Clinical Research><Clinical Study><Cognitive><Communication><Communities><Conflict><Conflict (Psychology)><Counseling><Data><Data Collection><Decision Making><Dementia><Dementia caregivers><Discipline><Distress><Encephalon><Enteral Feeding><Ethics><Frontal Temporal Dementia><Frontotemporal Dementia><Impairment><Individual><Intervention><Intervention Strategies><Interview><Investigation><Investigators><Judgment><Legal><Life Support Care><Link><Longitudinal Studies><Measures><Medical><Memory><Methods><Motivation><Nerve Degeneration><Neurobiology><Neurocognitive><Neurology><Neuron Degeneration><Neuropsychologies><Neuropsychology><Out-of-Pocket Expense><Participant><Patients><Pattern><Perception><Personality><Persons><Philosophy><Primary Senile Degenerative Dementia><Prolongation of Life><Public Health><Research><Research Personnel><Researchers><Role><Self Care><Self-reflection><Social Psychology><Social Sciences><Syndrome><Time><Uncovered Medical Expenses><Uncovered Uninsured Medical Expense><Uninsured Medical Expense><Work><active followup><burden in caregivers><burden of their caregivers><burden on caregivers><care giving><care giving outcome><care giving research><care preference><care receiver><care recipients><caregivers for persons living with dementia><caregivers for persons with dementia><caregivers of individuals with dementia><caregivers of patients with dementia><caregiving><caregiving outcomes><caregiving research><clinical care><coping><decision research><dementia care><dementia care giver><dementia caregiving><end of life><end-of-life><enteric feeding><ethical><experience><feeding tube><follow up><follow-up><followed up><followup><front temporal dementia><frontal lobe dementia><frontotemporal lobar dementia><frontotemporal lobe degeneration associated with dementia><gastric feeding><impaired capacity><innovate><innovation><innovative><insight><interdisciplinary collaboration><interventional strategy><long-term study><longitudinal outcome studies><longterm study><medical expenses not covered by insurance><multidisciplinary><neural degeneration><neurobiological><neurodegeneration><neurodegenerative><neurological degeneration><neuronal degeneration><neuropsychologic><new approaches><novel><novel approaches><novel strategies><novel strategy><out-of-pocket costs><out-of-pocket health care costs><person centered><personal care><poor health outcome><preference><preservation><primary degenerative dementia><psychological outcomes><reduced health outcome><research on caregiving><response><senile dementia of the Alzheimer type><social><social role><theories><total medical expenditure><transdisciplinary collaboration><tube feeding><worse health outcome>