Exploring the Experience of Ambiguous Loss among Spousal Caregivers of Persons with Dementia

The study tries to capture a caregiver's experience with ambiguous loss, that moment when the caregiver thinks that their spouse with dementia is no longer the person whom he/she knew them to be. For some caregivers this situation never seems to occur, while it may appear for others once or multiple times at different points during the disease trajectory. Furthermore, the experience of ambiguous loss results in healthcare decision-making that has various implications about the caregiver's physical and emotional health The study aims to explore the differences in caregiver's perception of ambiguous loss. Some of these differences may be influenced by personal and/or relationship values and beliefs which play a role in healthcare decision-making (i.e., utilization of healthcare resources). Decision-making has implications for both the caregiver and the spouse with dementia health and well-being, including dignity, autonomy, integrity, mutuality, depression, quality of life (and a multitude of other concepts that depict personal and relational well- being). Information for this study will be collected through in-person interviews, although Zoom option is also available for convenience. The in- person interviews are preferred because the questions may provoke the release of feelings of unresolved grief and emotional support would be best provided in-person. Consultation material will be, however, provided whether participants choose to be interviewed in-person or online. Participants will be asked to complete about 6-survey questionnaires prior to the interview; a process that should take about 20 minutes and this data can be collected in- person, over the phone, or online. We will then schedule a preferred date, time, and location for the interview to occur. Data will be analyzed, and study results can be shared with caregivers upon request. We aim to collect data from a minimum of 15 and maximum of 30 spousal caregivers of dementia patients by December 31, 2023. The study has been deemed exempt by the UC Davis IRB. Recruitment efforts, which started mid-May 2023, include collaboration with various community centers (e.g., healthy aging clinics, caregiver resource centers, Alzheimer's clinics, etc.,). Data analysis will be concurrent with interviewing and recruitment. Writing of results and publications will follow until September of 2024.