The African American Dementia and Aging Project (AADAPt): An Oregon-based Longitudinal Study.

Objectives: The vast majority of studies on aging, cognition, and dementia focus on non-Hispanic white subjects. This paper adds to the extant literature by providing insight into the African American aging experience. Here we describe the study design and baseline characteristics of the African American Dementia and Aging Project (AADAPt) study, which is exploring aging and cognition in African American older adults in Oregon. Methods: African American older adults (n=177) participated in AADAPt, a longitudinal study that collected data on cognitive, physical, and social functioning in annual visits since 2000. Results: AADAPt participants had risk factors for developing dementia in future, such as hypertension and hyperlipidemia, but also reported protective factors such as high social engagement. Conclusions: The AADAPt project offers new insights into aging in older African Americans that includes data on cognition, social engagement, and physical health, which are crucial for understanding the experience of under-represented groups and making future studies more inclusive. These findings reflect a window of time for a geographically-focused cohort, and the lessons learned from this study likely have broader implications for shaping the health of these older African American adults. Keywords: African American, Dementia, Observational Study.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. RESULTS: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. DISCUSSION AND IMPLICATIONS: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.

Factors influencing quality of life in African-American dementia dyads.

Objective: Both caregivers and the older adults they care for can experience declines in quality of life (QOL) over the course of the dementia trajectory. Little research has examined QOL in African-American caregivers and even less in African-American persons with dementia (PWDs), making it difficult to identify associated factors.Method: Guided by the Negro Family as a Social System framework, a secondary data analysis was used to examine the influence of family structure, instrumental and expressive role functions on QOL in a sample of 62 African-American dementia dyads (i.e. African-American PWDs and their African-American caregivers). Dyadic data were analyzed using multilevel modeling to control for the interdependent nature of the data.Results: On average, African-American PWDs reported significantly worse QOL than African-American caregivers. Within African-American dementia dyads, QOL covaried. African-American PWDs experienced significantly worse QOL when their caregiver was a non-spouse and they themselves perceived less involvement in decision-making. In addition, African-American caregivers experienced significantly worse QOL when they reported greater dyadic strain with the African-American PWD and were non-spouses of African-American PWDs.Conclusion: Findings suggest understanding the interpersonal characteristics (e.g., dyadic relationship, family structure and role functions) of dyads may hold promise for improving their QOL.

Patterns of Dyadic Appraisal of Decision-Making Involvement of African American Persons Living With Dementia.

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 a 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 was 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 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 the QOL of PLWDs in the remaining patterns.

Missing the Mark: The Complexity of African American Dementia Family Caregiving.

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.

Challenges and Strategies for Conducting Research With Grandparent-Grandchild Dyads.

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.

Formal Service Use by African American Individuals With Dementia and Their Caregivers: An Integrative Review.

Dementia is a predominant problem in older adults, affecting African American individuals at higher rates than other ethnic groups; yet, African American older adults use fewer formal services. To identify factors influencing formal service use by African American individuals with dementia and their caregivers, an integrative review of the literature was performed using four databases from 1990 to July 2017. Fourteen articles (nine quantitative, five qualitative) describing formal service use were included in the review. Three main themes were identified: Formal Service Need, Expectations of Formal Service Providers, and Formal Service Use. Recommendations to improve formal service use are suggested. [Journal of Gerontological Nursing, 44(6), 33-39.].