Letters of Intent for Pilot Projects Affirm the Heterogeneity of Dementia Family Caregiving

Background: The Emory Roybal Center for Dementia Caregiving Mastery (P30AG064200) supports pilot intervention projects designed to enhance informal caregiving mastery and seeks to further their development, following the NIH Stage Model. The Center’s core assertions are that dementia caregiving is heterogeneous in nature and that caregiving role demands are positioned within a variety of intersections involving dementia stage and type, the nature of care tasks, caregiver-care recipient relationships, and/or other social determinants including race/ethnicity, culture, class, and geography. Thus, interventions to develop/enhance caregiving mastery must be designed within the context of these intersections. This presentation demonstrates the resonance of the Center’s central theme and illustrates the wide range of caregiving situations/contexts investigators seek to address. Method: We analyzed the letters of intent (LOI) investigators submitted to the Center In its three years of operation. The LOIs describe context/situation-specific caregiving mastery interventions investigators seek to develop. Result: In three years, the Center received 67 LOIs from investigators in 26 U.S. states. Most (85%) were from female investigators; the majority were from early-stage (Assistant Professor) investigators (52%) and investigators from underrepresented groups (54%). Responses came from 10 different disciplines (including Behavioral Sciences (including Social Work), 14; Nursing, 12; and Medicine, 10). Proposed interventions fell into three broad (sometimes intersecting) categories: specific caregiving populations (e.g., racial/ethnic groups; specific caregiving relationships); specific caregiving challenges (e.g., skilled care tasks, managing delirium or chronic pain, caregiver self-care); and dementia types (e.g., MCI, Lewy Body Disease (LBD), and Frontotemporal Dementia). To date, the Center has provided support for pilot projects aiming to enhance mastery in caregivers of persons with Primary Progressive Aphasia and with LBD and couples living with MCI, among Native American caregivers and those from the LGBTQ community and rural caregivers, and those faced with skilled care tasks and who needed to develop skills through distance means. Conclusion: The Center has supported pilot projects that illustrate the importance of appreciating the heterogeneity of dementia caregiving. The voluminous response to the LOI call demonstrates the salience of the heterogeneity theme and underscores the need for additional work to enhance dementia caregiving mastery in its many contexts.