Alzheimer’s disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America’s annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.

Abstract Background and Objectives Greater everyday decision-making involvement by persons living with dementia (PLWD) and congruent appraisal between PLWDs and their caregivers have been associated with better quality of life (QOL) for both members of the dyad. However, no study has examined the association between the appraisals of everyday decision-making involvement of PLWDs and their QOL among African Americans. Research Design and Methods A secondary analysis of cross-sectional data from 62 African American dementia dyads was conducted. Multilevel and latent class mixture modeling were used to characterize dyadic appraisal of the decision-making involvement of African American PLWDs and identify distinct patterns thereof. Results Three distinct patterns were observed. “Incongruent, PLWD Low Involvement” labeled in 19.4% of the sample, 53.2% were labeled “Incongruent, PLWD Moderate Involvement;” and 27.4% were labeled “Congruent, PLWD High Involvement.” The Congruent, PLWD High Involvement pattern consisted of PLWDs who were significantly younger and had significantly less cognitive impairment than PLWDs in the other patterns. In the Incongruent, PLWD Moderate Involvement pattern, PLWDs had significantly better QOL than PLWDs in the Incongruent, PLWD Low Involvement pattern but QOL did not significantly differ from PLWDs in the Congruent, PLWD High Involvement pattern. Discussion and Implications There is a need to tailor strategies to optimize QOL in African American dementia dyads. While increasing everyday decision-making involvement for PLWDs in the Incongruent, PLWD Low Involvement pattern is an important goal, other strategies may be needed to improve QOL of PLWDs in the remaining patterns.

Nearly 16 million family caregivers provide essential care to 5.5 million Americans living with Alzheimer's and related dementias (ADRD). African Americans are two to three times more likely to have ADRD than non-Hispanic whites, to be caregivers at a younger age, and to provide higher intensity care. The purpose of this symposium is to increase understanding of family caregiving from the perspective of African American family caregivers. Dr. Epps will open the symposium by presenting the results of a qualitative study that characterized African American family networks and the themes of complexity, familism, and religiosity. Dr. Moss will report on her study of health-related quality of life and family caregivers' self-efficacy for surrogate decision making. She will discuss the complex interplay between their perceptions of quality of life and their ability to make end-of-life decisions. Ms. Bonds will also report on her study in which she used multilevel modeling and found significant relationships between perceived levels of involvement in decision making, quality of life, and dyadic strain. Dr. McLennon will present findings from her mixed methods study regarding cultural variations in perceptions among older African American caregivers to assess burden and find meaning through caregiving. Thereafter, Dr. Brewster will draw attention to the importance of sleep among African American caregivers and report on two interventions to enhance sleep quality. To conclude the symposium, the researchers will discuss the role of race in researcher-participant relationships and its impact on recruitment, data collection, analysis, interpretation, and dissemination of their findings.

Background Given a marked increase in the number of grandparents who play a caregiving role for their grandchildren, there is a parallel urgency for more research involving grandparent–grandchild dyads. Objective The aim of this study was to describe methodological challenges we encountered when conducting grandparent–grandchild dyadic research, some of which were challenges specific to working with dyads where the grandparents were caregivers to the child participants and others, which were challenges of a sort that might be encountered in any research involving data collection with multigenerational family units and, in particular, multigenerational family units including older adults. Methods During and after an observational study conducted by the researchers involving grandparent–grandchild dyads, we explored challenges we encountered and strategies for improving our research outcomes. Results We found several challenges specific to grandparent–grandchild dyads, including complications with reaching legal guardians to obtain permission for child participants; collecting accelerometer data from grandchildren was difficult, particularly if the grandparents did not live with their grandchildren; and participants who had various preferences for data collection methods. We also found challenges that might be found with any family context dyadic research, particularly involving older adults and across multiple generations, including relatively low follow-up response rates from those grandparents who initially expressed interest and a need for an extended data collection period. We employed targeted strategies to overcome those obstacles, and in this article, we describe the outcomes of those strategies. Discussion Recommendations from our results include the following: (a) find a way to involve the parents and/or legal guardian as early as possible, (b) have multiple team members involved in recruitment/data collection, (c) be flexible about data collection methods, (d) use flexible scheduling, and (e) use multiple simultaneous recruitment activities/multiple advertisement channels. Additional strategies include enhancing children’s sense of control during the consent process, simplifying study procedures, considering usability when creating online data surveys, and identifying power dynamics within the families. Conclusion The insights we gained will be useful for informing future family context dyadic research, in particular, research involving grandparent–grandchild dyads.