Mastery Goals for Black American Dementia Caregivers

Abstract About 5.8 million older American adults live with Alzheimer’s disease and related dementias; Black American older adults’ prevalence is more than twice that of non-Hispanic white older adults. The Black American dementia caregiving experience can be pictured within the Black Family Social-Ecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersecting identities of race, gender, and class of Black American caregivers influence the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and healthcare systems have a potentially bidirectional influence on these caregivers, which is informed by the larger historical reality of systemic racism and general disenfranchisement. This paper outlines how Stress Process and Perceived Control frameworks offer ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs. We propose a research and development agenda to create a program for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, “constraints” and “efficacy expectations,” provide ways to develop a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role. The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers’ experience emphasize the importance of individualization: each caregiver’s experience of this ecosystem– and therefore each Black American caregiver’s way to mastery within it– will be uniquely shaped and experienced.

the primary care setting, and whether patients would engage in advance care planning through this medium.The Koda platform is a video-driven, web application that guides patients through advance care planning concepts, including values and quality of life exploration, surrogate decision maker selection, life-support treatments, and advance directive completion.The study was completed over a six-month period in two primary care clinics in the Houston, Texas area.Inclusion criteria were age 55 or older, English-speaking, and capacity for medical decision making.339 patients met eligibility criteria and had a median age of 73 (range 59-89).All participants were offered the platform, and 262 (77%) created an account and began planning for their care.Of the patients that created an account, 87% completed all ACP steps on the platform and 72% identified a surrogate decision maker.The median time spent on the platform was 18 minutes.The Koda platform appears to be a useful tool for patients and providers to improve engagement in advance care planning and improve surrogate decision maker identification.Further research is needed to understand whether the Koda platform aids in providing goalconcordant care.

IMPROVING STAFF-FAMILY END-OF-LIFE COMMUNICATION AT ISRAELI GERIATRIC FACILITIES BY USING A MOBILE APP
Rinat Cohen, 1 Gal Maydan, 2 Shai Brill, 3 and Jiska Cohen-Mansfield, 4 1.Hadera,Hefa,Israel,2. Beit Rivka,HaMerkaz,Israel,3. Clalit Health Services,Tel Aviv,Israel,Tel Aviv,Israel Family caregivers (FCs) of persons institutionalized at geriatric facilities present significant unmet communication needs regarding receiving regular updates about their loved one's condition and having available healthcare professionals (HPs) to approach when needed.We developed and tested a mobile-app for staff-family communication with both parties having active roles in app planning to tailor it to their needs and abilities.The app includes a daily-update module for FCs and a chat option for FCs and HPs.App use was piloted at one geriatric-medical-center for 15 months (unitlevel randomization resulted in one complex-care and one assisted-ventilation unit in each group-intervention and control) and one single-unit nursing-home for three months.Personal interviews were conducted with 55 FCs (28 from intervention-group and 27 FCs from control-group) beforeand-after app use (with mean duration of use 1.6[S.D.=.6] months.Most participants were women and the children of the patients; their mean age was 55.9 years (S.D.=12.4).Repeated-measures Analysis-of-Variance for the end-of-life communication sub-scale on the Quality-of-communication questionnaire yielded a main effect for time (F(1,53)=8.31,p=.006) with both groups' ratings increasing over time and an interaction effect (F(1,53)=4.78, p=.033) with a greater increase for intervention-group compared to control-group.Intervention-group participants rated the app as convenient to use.Qualitative data revealed that FCs perceived app use as improving quality of communication with the HPs who used it and improving their own well-being.The app offers a feasible and an effective mode of communication that incorporates technology in daily communication between FCs and HPs while addressing FCs' unmet needs.

TEXT-MINING IN LONG-TERM CARE: EXPLORING THE USEFULNESS OF COMPUTER-AIDED ANALYZING METHODS
Sil Aarts, 1 Coen Hacking, 2 Hilde Verbeek, 2 Jan Hamers, 2 and Katya Sion, 2 1. Maastricht university, Maastricht,Limburg,Netherlands,2. Maastricht University,Maastricht,Limburg,Netherlands In nursing homes, narrative data are collected to evaluate quality of care as perceived by residents or their family members.This results in a large amount of textual data which exceeds the capability of humans to analyse it.This study aims to explore the usefulness of text-mining approaches regarding narrative data gathered in a nursing home setting.Data has been collected as part of the project 'Connecting Conversations': assessing experienced quality of care by conducting individual interviews (n=125) with residents of nursing homes, family members and care professionals.Several pre-processing steps were applied to the textual data.Finally, a variety of text-mining analyses were conducted: individual and bigram word frequencies, correlation analysis and sentiment analysis.A survey was conducted to establish a sentiment analysis model tailored to text collected in long-term care for older adults.Residents, family members and care professionals uttered respectively 285, 362 and 549 words per interview.Word frequency analysis showed that words that occurred most frequently in the interviews are often positive.Although there are some differences in wording such as the use of 'mother' and 'breakfast', correlation analysis displayed that similar words are used by all three groups to describe quality of care.The majority of interviews displayed a neutral sentiment.Care professionals are more diverse in their sentiment than residents and family members: while some express a more positive sentiment, others express more negativity.This study demonstrates the usefulness of text-mining to extend our knowledge regarding quality of care in a nursing home setting.

Session 4340 (Paper) Black Caregivers' Health
MASTERY GOALS FOR BLACK AMERICAN DEMENTIA CAREGIVERS Kalisha Bonds Johnson, 1 Fayron Epps, 1 Glenna Brewster, 2 Carolyn Clevenger, 3 Gaea Daniel, 3 Victoria Pak, 3 Sudeshna Paul, 3 and Kenneth Hepburn, 1 1.Emory University, Atlanta, Georgia, United States, 2. Emory University, Stonecrest, Georgia, United States, 3. Emory University, Emory University, Georgia, United States About 5.8 million older American adults live with Alzheimer's disease and related dementias; Black American older adults' prevalence is more than twice that of non-Hispanic white older adults.The Black American dementia caregiving experience can be pictured within the Black Family Social-Ecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersecting identities of race, gender, and class of Black American caregivers influence the multiple dimensions of their caregiving experiences.
Family dynamics, community setting, and healthcare systems have a potentially bidirectional influence on these caregivers, which is informed by the larger historical reality of systemic racism and general disenfranchisement.This paper outlines how Stress Process and Perceived Control frameworks offer ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs.We propose a research and development agenda to create a program for enhancing a sense of mastery among Black American dementia caregivers.Two concepts in particular, "constraints" and "efficacy expectations," provide ways to develop a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role.The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers' experience emphasize the importance of individualization: each caregiver's experience of this ecosystem-and therefore each Black American caregiver's way to mastery within it-will be uniquely shaped and experienced.
of Nursing,Baltimore,Maryland,United States,2. Johns Hopkins University,Baltimore,Maryland,United States,3. Harvard Medical School,Boston,Massachusetts,United States,4. Johns Hopkins University School of Medicine,Baltimore,Maryland,United States,5. Nursing,Baltimore,Maryland,United States,6. Johns Hopkins School of Nursing,Baltimore,Maryland,United States African Americans experience high rates of undermanaged pain as they age.African Americans often become family or informal caregivers, and undermanaged pain may have implications for their overall health and ability to perform caregiving tasks.The purpose of this study was to examine if pain was related to overall health and number of caregiving activities among African American caregivers.We used data from round 7 of the National Study of Caregiving (N= 646 African American caregivers, mean age= 57 years [SD=15]).Pain over the prior month was participant-assessed.Of this sample, 451 (69.7%) were women, 324 (50.1%) had pain, and 309 (47.8%) had multiple comorbidities.The number of caregiving activities ranged from 8 to 14 with mean of 11.6 (SD= 1.4).In a logistic regression model, controlling for income, education, and comorbidities, we found having pain in the last month was associated with lower likelihood of very good or excellent health (Adjusted OR 0.48; 95% CI 0.33 to 0.69) and greater likelihood of having depressive symptoms (Adjusted OR 2.04; 95% CI 1.34 to 3.10).In a linear regression model, however, pain was not significantly related to the number of caregiving activities (R2 = 0.04).Findings suggest that while pain is related to poorer physical and mental health outcomes among African American caregivers, even pain does not deter them from providing care for care recipients.Management of pain among African American caregivers may be beneficial for improving their own overall health and mental health.Resolution of ongoing inequities in dementia care requires careful examination of how care is delivered to ensure we are aware of, and meeting needs for all people affected, especially those most vulnerable and in under-resourced communities.Maximizing Independence at Home (MIND) is a multicomponent, home-based dementia care program designed to provide high quality, wholistic care coordination for to persons and families living with dementia.Program goals are to delay transition from home, improve life quality, and reduce unmet care needs.We completed three focus groups (n = 25) with Black (e.g., African American) dementia caregivers who received the intervention to understand (1) the unique dementia related needs of Black dementia