scholarly journals Experiences of African American Dementia Caregivers During the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 976-976
Author(s):  
Sloan Oliver ◽  
Karah Alexander ◽  
Fayron Epps
Keyword(s):  
African American ◽  
Well Being ◽  
Comfort Level ◽  
Dementia Caregivers ◽  
Community Partners ◽  
Purposeful Sampling ◽  
Socially Isolated ◽  
Caregiver Role ◽  
Education Courses ◽  
African American Caregivers

Abstract African American caregivers are often confronted with the complexities of caregiving through the lens of race and associated health disparities. The COVID-19 pandemic has both exacerbated the systemic disparities and deeply rooted inequities experienced by African Americans and laid bare their effects on the community of caregivers. The purpose of this project was to explore the experiences of African American dementia caregivers during the COVID-19 pandemic. Nineteen African American caregivers of persons living with dementia were recruited by primary investigators and community partners with purposeful sampling techniques to participate in semi-structured focus groups that were held April 2021. Four overarching themes were constructed during thematic analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges in fulfilling the caregiver role. Caregivers expressed that they became socially isolated from family and friends, which led to them becoming depressed and mentally strained. Several caregivers felt they could not carry out their caregiver duties due to the constraints surrounding the pandemic. The varying levels of interaction with and the comfort level of physicians utilizing telehealth led to caregivers having mixed reviews on the popularized service. The results of this study will be used to culturally adapt caregiving education courses and programs promoting mastery and competency during a pandemic. In preparations for future public health crises, healthcare professionals will be able to use the results of this study to address the specific needs and improve the experiences of African American dementia caregivers.

scholarly journals Resilience and Service Needs Among African American Caregivers of People With Dementia: A Pilot Mixed-Methods Study

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 353-353
Author(s):  
Heehyul Moon ◽  
Sunshine Rote ◽  
Hallie Decker ◽  
Burton Kelsey ◽  
Chelsea Burton ◽  
...  
Keyword(s):  
African American ◽  
Family Relationships ◽  
Sense Of Self ◽  
Health Care Systems ◽  
Well Being ◽  
Dementia Care ◽  
Service Needs ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
African American Caregivers

Abstract African American caregivers face unique challenges and strengths in addressing the needs of dementia care recipients. The purpose of the current study was to explore the roles of the familism and faith and service preferences and needs for African American dementia caregivers. Through collaborative partnerships among the research team, Alzheimer’s’ Association, Area Agency on Aging, and local churches, we obtained focus group and survey data (N=30) from African American dementia caregivers. Most caregivers were female (90%) and older than 51 years and had provided care more than 3 years. CGs showed strong cultural reasons (e.g., faith, duty, paying back) for providing care (range 0-40;M= 34.5; SD= 5.2). Focus groups data, which was audio taped, transcribed, and analyzed by three researchers using content analysis, revealed three major themes related to dementia care experiences and needs. First, caregivers explained positive aspects of caregiving for both the individual caregiver and family (growth in faith, sense of self -efficacy, feeling of gratefulness). Second, caregivers also described negative aspects that pose substantial challenges such as lack of services, lack of balance in life, family conflicts over care, and mistrust based on their previous experiences with existing health care systems. Third, caregivers described their knowledge of dementia and shared their self-care and coping strategies and a need for support group services. The findings show an urgent need to implement culturally responsive services, especially in undeserved areas and populations, for caregivers to maintain or improve their emotional well-being and quality of care as well as family relationships.

scholarly journals Systematic Review and Meta-Analysis of Racial and Ethnic Differences in Dementia Caregivers’ Well-Being

2020 ◽  
Author(s):  
Chelsea Liu ◽  
Adrian N S Badana ◽  
Julia Burgdorf ◽  
Chanee D Fabius ◽  
David L Roth ◽  
...  
Keyword(s):  
African American ◽  
Ethnic Differences ◽  
Well Being ◽  
Population Based ◽  
Dementia Caregivers ◽  
Psychological Well Being ◽  
White Caregivers ◽  
Racial Ethnic ◽  
Study Bias ◽  
African American Caregivers

Abstract Background and Objectives Studies comparing racial/ethnic differences on measures of psychological and physical well-being for dementia caregivers have reported differences between minority and white caregivers. Recruitment methods often differ for minority and white participants due to enrollment targets and may lead to biased comparisons, especially in convenience samples. We aimed to examine racial/ethnic differences in dementia caregiver outcomes and to determine whether differences vary between studies with population-based or convenience samples. Research Design and Methods We systematically reviewed articles with primary data from PubMed, Google Scholar, and PsycINFO. We included studies comparing African American or Hispanic/Latino to white dementia caregivers on measures of psychological well-being or physical well-being. Reviewers screened titles and abstracts, reviewed full texts and conducted risk-of-bias assessments. Meta-analyses were conducted to assess effects by race/ethnicity and study bias. Results A total of 159 effects were extracted from 38 studies, 2 of which were population based. Random-effects models revealed small but statistically significant effects with better psychological well-being in African American caregivers compared with white caregivers in both population-based (d = −0.22) and convenience sample studies (d = −0.21). Hispanics/Latino caregivers reported lower levels of physical well-being than white caregivers (d = 0.12), though these effects varied by level of rated study bias. Discussion and Implications Consistency across study methods raises confidence in the validity of previous reports of better psychological well-being in African American caregivers. Future studies should use population-based samples with subgroups of Hispanic/Latino, Asian American, and American Indian caregivers that are culturally distinct on factors such as country of origin and tribe.

scholarly journals Aspects of Grit Among Dementia Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 8-8
Author(s):  
Jyoti Savla ◽  
Karen Roberto ◽  
Jennifer Margrett
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Future Research ◽  
Spiritual Support ◽  
Dementia Caregivers ◽  
Dementia Caregiver ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

scholarly journals “THEY SHOULD PUT ALZHEIMER’S GROUPS IN THE CHURCHES”: A SYNTHESIS OF AFRICAN AMERICAN CAREGIVERS’ LIVED EXPERIENCES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S969-S969
Author(s):  
Erin R Murphy ◽  
Destony Brooks ◽  
Julie Bryant ◽  
Noelle L Fields ◽  
Ling Xu
Keyword(s):  
African American ◽  
African Americans ◽  
Health Care Professionals ◽  
A Priori ◽  
Well Being ◽  
Chronic Fatigue ◽  
Materials Synthesis ◽  
Holistic Understanding ◽  
The Impact ◽  
African American Caregivers

Abstract Alzheimer’s disease and related dementias (ADRD) are challenging chronic health conditions that disproportionately impact African Americans. Caring for a family member with ADRD can be a taxing experience that impacts the mental, social, and physical realms of the caregiver’s life. Chronic fatigue and high levels of anxiety, depression, and agitation have all been associated with caregiving. The extant literature on caregivers is limited by being conducted primarily in settings with White participants, excluding the cultural attitudes and values that may impact caregiver experience. As part of a larger, mixed-methods team studying the impact of an innovative psychoeducational intervention, the researchers conducted a qualitative interpretive meta-synthesis (QIMS) to better understand the experiences and perceptions of African Americans who care for family members with ADRD. A QIMS was chosen as the methodology for this study because of its ability to create a more holistic understanding of the phenomenon, while maintaining the integrity of the original studies. An exhaustive literature search yielded 1,285 potentially relevant studies. Studies were compared across a priori inclusion criteria. Findings of this study indicate that overall knowledge of ADRD is relatively low among caregivers and participants are unsure of how to access educational materials. Synthesis of these studies also indicate a need for incorporating spiritual well-being into caregiving services. Results of this study may help social workers and other health care professionals to better understand cultural perceptions of the disease and how to better provide psychoeducational interventions related to the specific needs of African American caregivers.

scholarly journals The Effect of the “Great Village” on Psychological Outcomes, Burden, and Mastery in African American Caregivers of Persons Living With Dementia

2019 ◽  
Vol 39 (10) ◽  
pp. 1059-1068 ◽  
Author(s):  
Glenna S. Brewster ◽  
Fayron Epps ◽  
Clinton E. Dye ◽  
Kenneth Hepburn ◽  
Melinda K. Higgins ◽  
...  
Keyword(s):  
African American ◽  
Depressive Symptoms ◽  
Cultural Adaptation ◽  
Well Being ◽  
Tailored Interventions ◽  
Randomized Control ◽  
Culturally Tailored Interventions ◽  
Health And Well Being ◽  
African American Caregivers

The " Great Village," a cultural adaptation of a psychoeducation intervention the “ Savvy Caregiver” for African American caregivers of persons living with dementia (PLwD), aims to develop caregivers’ skills and improve the quality of the lives of both the PLwD and their caregivers. The goal of this study was to determine the effectiveness of the Great Village on depressive symptoms, anxiety, burden, and mastery in African American caregivers ( N = 142). A three-arm randomized control trial ( Great Village, Great Village + exercise, and attention control) was conducted over a period of 6 months. Caregivers who received either Great Village or Great Village + exercise reported significant reduction in depressive symptoms and improvement in mastery. Caregivers who received only Great Village reported a reduction in anxiety. Receiving no intervention worsened caregiver burden. African American caregivers should receive culturally tailored interventions to support their health and well-being and improve their competence in caregiving.

scholarly journals Teacher leadership and sustainability in adult elderly education

2020 ◽  
Vol 15 (3) ◽  
pp. 433-445
Author(s):  
Tayfun Yörük ◽  
Reyhan Şekerci
Keyword(s):  
Qualitative Research ◽  
Teacher Leadership ◽  
Successful Aging ◽  
Well Being ◽  
Structured Interview ◽  
Education Management ◽  
Systematic Assessment ◽  
Purposeful Sampling ◽  
Analysis Technique ◽  
Education Courses

The purpose of this study was to reveal the views of administrators working in institutions providing adult elderly education on teacher leadership. Ten administrators, who were determined via convenience sampling which is among purposeful sampling methods, participated in this study using qualitative research method. The study was conducted in phenomenological design, which is among qualitative research designs. The interview technique was used to collect data in the study, thus, a semi-structured interview form was prepared and used for this process. The data were analyzed via content analysis technique. All the data acquired in the study were coded, various dimensions and appropriate themes for these dimensions were determined in accordance with the purpose of the study, and percentages and frequencies related to the themes were calculated and the views of the administrators on teacher leadership were revealed. As a result, the concept of an enriched environment, including cognitive tasks, such as elder education courses (sports, physical activity, artistic and skill studies), can form the basis for systematic assessment of possible interventions for successful aging. It provides another effective possibility to achieve better physical, physiological and cognitive improvements, especially in older adult. Further efforts are needed on the basis of teacher leadership in older education courses to reduce weakness and dependency among older adults and maintain independent physical and cognitive function, mental health and well-being. Keywords: Adult Elderly Education, Education Management, Teacher Leadership;

scholarly journals African-American caregivers’ perspectives on aggressive behaviors in dementia

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 3036-3058
Author(s):  
Bryan R Hansen ◽  
Nancy A Hodgson ◽  
Laura N Gitlin
Keyword(s):  
African American ◽  
Aggressive Behavior ◽  
Cultural Values ◽  
Behavioral Strategies ◽  
Aggressive Behaviors ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Effective Strategies ◽  
Person With Dementia ◽  
African American Caregivers

Purpose Although African-American dementia caregivers report less upset and more confidence managing aggressive behaviors when compared to whites, their contextual experience remains unclear and this study explores that context. Methods Semi-structured interviews with 13 African-American family caregivers were analyzed using content analysis. Results Two themes emerged, “It’s the disease…not the person” and “You got to pick your battles.” “It’s the disease…not the person,” reframing aggressive behavior, included three sub-themes. Sometimes the person with dementia seemed like a stranger but caregivers remembered “In there somewhere is that person.” Aggressive behavior made this perspective difficult as they reported, “Sometimes it’s hard not to take it personal.” Premorbid dyadic conflict made caregiving difficult but caregivers remembered they were “Not who they were then.” “You got to pick your battles,” reflecting cognitive and behavioral strategies, also included three sub-themes. Participants prioritized caregiving over other commitments by reminding themselves “I got to do what I gotta do.” Preventing aggressive behaviors was most successful when “We didn’t argue…we didn’t insist” and caregivers remembered “Don’t put her in a position to fail” when involving the person with dementia in activities. Implications African-American caregivers described substantial challenges when confronted by aggressive behaviors. Strategies employed by caregivers enabled them to maintain a caring perspective and the person with dementia to maintain calm. Interventions that help caregivers manage aggressive behaviors may benefit by considering the challenges, cultural values, and effective strategies used by African-Americans.

scholarly journals Engaging Underrepresented Caregiving Communities in Dementia Research

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 768-768
Author(s):  
Andrea Gilmore-Bykovskyi ◽  
Ishan Williams
Keyword(s):  
African American ◽  
Disease Risk ◽  
Text Message ◽  
Dementia Caregivers ◽  
Crisis Events ◽  
Dementia Research ◽  
Use Of Services ◽  
Latino Caregivers ◽  
And Gender ◽  
African American Caregivers

Abstract Family and friend caregivers of persons with dementia from underrepresented and traditionally underserved backgrounds are significantly underrepresented in dementia and caregiving research despite heightened disease risk, poorer outcomes, and disproportionate use of services within these populations. Efforts to develop and disseminate methods that foster greater inclusion of underrepresented caregiving populations in research are essential to ensuring that culturally specific understandings, priorities, and needs of these groups are systematically understood and addressed. In this symposium, we present a variety of studies that illustrate successful efforts to include dementia caregivers from underrepresented backgrounds in research. Two presentations focus on African American caregivers, one on caregivers residing in highly under-resourced areas, one on Latino caregivers, and one on sexual and gender minority (SGM) caregivers. The first presentation describes a capacity building approach through African American faith communities to develop a research registry and address informational needs regarding dementia. The second presentation focuses on eliciting African American caregivers experiences of crisis events. Presentation three describes a coalitional, community-informed approach to engaging caregivers in highly under-resourced areas to investigate experiences with post-acute care. The fourth presentation describes a community-network approach to implementing a text-message based support intervention among Latino caregivers; and the fifth presentation illustrates the utility of digital methods for engaging SGM dementia caregivers. Collectively, these presentations demonstrate a variety of approaches to engaging dementia caregivers from underrepresented and traditionally underserved backgrounds in research that are specific to individual communities and local contexts – as well as the findings that result from these efforts.

Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study

2004 ◽  
Vol 8 (4) ◽  
pp. 316-329 ◽  
Author(s):  
W. E. Haley ◽  
L. N. Gitlin ◽  
S. R. Wisniewski ◽  
D. Feeney Mahoney ◽  
D. W. Coon ◽  
...  
Keyword(s):  
African American ◽  
Well Being ◽  
Dementia Caregivers ◽  
And Coping

scholarly journals The Health and Well-Being of African-American Older Adults With a History of Incarceration

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 506-506
Author(s):  
Rodlescia Sneed
Keyword(s):  
Older Adults ◽  
African American ◽  
African Americans ◽  
Well Being ◽  
Formerly Incarcerated ◽  
Older Prisoners ◽  
Health Related ◽  
History Of ◽  
Health And Well Being ◽  
African American Older Adults

Abstract African-Americans are overrepresented in the criminal justice system. Longer prison stays and release programs for older prisoners may result in an increased number of community-dwelling older adults with a history of incarceration. In recent years, there has been a substantial increase in research on health-related outcomes for currently incarcerated older adults; however, there has been little inquiry into outcomes for formerly incarcerated African-American older adults following community re-entry. In this study, we used secondary data from the Health and Retirement Study to describe employment, economic, and health-related outcomes in this population. Twelve percent of the 2238 African-Americans in our sample had been previously incarcerated. Those who had been previously incarcerated had higher rates of lung disease, arthritis, back problems, mobility problems, and mental health issues than their counterparts. They also had higher rates of hospitalization and lower use of dental health services. Further, while they did not experience lower employment rates than those with no criminal history, those who had been incarcerated had more physically demanding jobs and reported greater economic strain. Given the disproportionate incarceration rates among African-Americans, the aging of the prison population, and the increase in community re-entry for older prisoners, research that explores factors that impact the health and well-being of formerly incarcerated individuals has broad impact. Future work should focus on addressing the needs of this vulnerable population of African-American older adults.

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