This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers’ quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems’ factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.

Purpose This study examined secondary benefits of an individualized physical activity intervention on improving dementia family caregivers’ subjective burden, depressive symptoms and positive affect. Design and Methods A community-based randomized controlled trial (RCT) was implemented with family caregivers of persons with dementia (N = 211) who received the Enhanced Physical Activity Intervention (EPAI: treatment intervention, n = 106) or the Caregiver Skill Building Intervention (CSBI: control intervention, n = 105). Interventions were delivered over 12 months, including a baseline home visit and regularly spaced telephone calls. Data were collected in person at baseline, 6 and 12-months; and telephonically at 3 and 9-months. The EPAI integrated physical activity and caregiving content while the CSBI focused only on caregiving content. Descriptive, bivariate and intention-to-treat analyses using generalized estimating equations (GEE) were performed to examine secondary benefits of the EPAI on family caregiver burden, depressive symptoms and positive affect. Results Compared to caregivers in the CSBI group, caregivers in the EPAI significantly increased their overall and total moderate physical activity and showed a positive interaction between the intervention and time for positive affect at both six (p = 0.01) and 12-months (p = 0.03). The EPAI was significantly associated with improving burden at 3 months (p = 0.03) but had no significant effect on depressive symptoms. Implications Caregiver involvement in an individualized physical activity intervention was associated with increased overall and total moderate physical activity and improved positive affect from baseline to 12 months. Improved positive affect may help caregivers to feel better about themselves and their situation, and better enable them to continue providing care for their family member for a longer time at lower risk to their own mental health.

Background Several studies have demonstrated a link between perceived discrimination and depression in ethnic minority groups, yet most have focused on younger or middle-aged African Americans and little is known about factors that may moderate the relationship. Methods Participants were 487 older African Americans (60-98) enrolled in the Minority Aging Research Study. Discrimination, depressive symptoms, and psychological and social resources were assessed via interview using validated measures. Ordinal logistic regression models were used to assess (1) the main relationship between discrimination and depression and (2) resilience, purpose in life, social isolation, and social networks as potential moderators of this relationship. Results In models adjusted for age, sex, education, and income, perceived discrimination was positively associated with depressive symptoms (OR, 1.20; 95% CI, 1.10 to 1.31, p < .001). However, there was no evidence of effect modification by resilience, purpose in life, social isolation, or social networks (all ps ≤ .05). Conclusion and Implications Findings provide support for accumulating evidence on the adverse mental health effects of discrimination among older African Americans. Because the association was not modified by psychological or social factors, these findings do not support a role for a buffering effect of resources on discrimination and depressive symptoms. Further studies are needed to examine a wider range of coping resources among older adults.

The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have called for the identification of gaps in key areas of family caregiving intervention research. In March 2018, the Family Caregiving Institute at UC Davis convened an invitational meeting of over 50 thought leaders in family caregiving—representing service agencies, funding organizations, and academia—to participate in the Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness. Using an iterative process, attendees identified the top 10 research priorities and created research priority statements that incorporated a definition of the priority topic, rationale for the priority; problem(s) to address; priority population(s); and example research topics. The research priority statements serve as a roadmap for research development that will address the most significant gaps in the caregiving field.