Addressing the Needs of Key Subgroups of Caregivers of Persons with Dementia After Loss Using Self-Determination Theory: A Mixed Methods Approach

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Project Summary / Abstract Within 10 years, most persons living with Alzheimer’s disease and related dementias (AD/ADRD; PLWD) will die, creating 13+ million new bereaved AD/ADRD caregivers. 25% of bereaved AD/ADRD caregivers have clinically ‘complicated grief’, which impairs nearly all aspects of their lives. Among bereaved AD/ADRD caregivers who are not clinically impaired, millions still suffer from higher depressive symptoms and loneliness as well as reduced well-being, physical function, self-care, and personal growth. Researchers may be tempted to treat bereaved AD/ADRD caregivers as a homogenous group, but bereavement differs between key kin subgroups of spouses and adult children. Unfortunately, how bereavement differs for extended family is difficult to discern. The long-term goal of this research is to develop interventions to meet the needs of bereaved AD/ADRD caregivers. The objective of this proposal is to test a comprehensive model of bereaved AD/ADRD caregiver needs and identify need satisfying experiences within key kin subgroups that are amenable to future intervention. The central hypothesis is that bereaved AD/ADRD caregivers have a common set of needs that influence clinical and subclinical outcomes, but that subgroups meet those needs in different ways, based on evidence from self-determination theory and 10 months observing bereaved AD/ADRD caregivers. Autonomy, competence, and relatedness are hypothesized to form a common set of needs essential to clinical and subclinical outcomes for bereaved AD/ADRD caregivers (Aim 2; tested in a survey of 400 bereaved AD/ADRD caregivers). Key subgroups are hypothesized to meet these needs differently (Aim 3; tested in semi-structured interviews with 36-45 bereaved AD/ADRD caregivers). Through a tailored training plan and world-renowned- expert mentorship in one of the nation’s foremost schools of public health, the candidate will gain expertise in bereavement, stakeholder engagement, qualitative methods, and mixed methods to facilitate completion of the long-term goal of this research. Complementing the research team, a Community Advisory Board (CAB) of bereaved AD/ADRD caregivers and stakeholders will advise the present project and the PI’s broader research program aimed at helping bereaved AD/ADRD caregivers. CAB members represent different races, ethnicities, sexes, genders, ages, clinical specialties, types of dementia, time since bereavement, community organizations, and geographic locations. After this award, the CAB will help guide development of interventions based on the findings of Aims 2 and 3. The proposed research is innovative in its focus on key subgroups, application of self-determination theory, and diverse CAB focused on bereaved AD/ADRD caregivers. The work will address the NIA’s goal to increase understanding of bereaved AD/ADRD caregivers’ needs, informing future interventions that reduce the clinical and subclinical consequences of bereavement. Together the integrated research strategy and training plan will also facilitate a successful transition to independence for a researcher committed to helping PLWD and their caregivers thrive throughout the dementia caregiving journey.