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      Promoting Caregiver Mastery in Black American Dementia Caregivers

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          Abstract

          Over 6 million older Americans 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 encapsulated within the Black Family Socioecological 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 intersection of race, gender, and class of Black American dementia caregivers influences the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and health care systems have a potentially bidirectional influence on these caregivers, which is shaped by historical and ongoing systemic and institutional racism and general disenfranchisement. This Forum article outlines how the Social Cognitive Theory offers 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 agenda to create programs and interventions for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, “constraints” and “efficacy expectations,” provide ways to create 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 and identity emphasize the importance of individualization: Each caregiver’s experience of this ecosystem—and therefore each Black American dementia caregiver’s way to mastery within it—will be uniquely shaped and experienced.

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          Most cited references60

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          Self-efficacy: Toward a unifying theory of behavioral change.

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            Social cognitive theory: an agentic perspective.

            The capacity to exercise control over the nature and quality of one's life is the essence of humanness. Human agency is characterized by a number of core features that operate through phenomenal and functional consciousness. These include the temporal extension of agency through intentionality and forethought, self-regulation by self-reactive influence, and self-reflectiveness about one's capabilities, quality of functioning, and the meaning and purpose of one's life pursuits. Personal agency operates within a broad network of sociostructural influences. In these agentic transactions, people are producers as well as products of social systems. Social cognitive theory distinguishes among three modes of agency: direct personal agency, proxy agency that relies on others to act on one's behest to secure desired outcomes, and collective agency exercised through socially coordinative and interdependent effort. Growing transnational embeddedness and interdependence are placing a premium on collective efficacy to exercise control over personal destinies and national life.
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              2021 Alzheimer's disease facts and figures

              (2021)
              This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the challenges of providing equitable health care for people with dementia in the United States. An estimated 6.2 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available, making Alzheimer's the sixth-leading cause of death in the United States and the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated in 2020 by the COVID-19 pandemic. More than 11 million family members and other unpaid caregivers provided an estimated 15.3 billion hours of care to people with Alzheimer's or other dementias in 2020. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $256.7 billion in 2020. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes - costs that have been aggravated by COVID-19. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2021 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $355 billion. Despite years of efforts to make health care more equitable in the United States, racial and ethnic disparities remain - both in terms of health disparities, which involve differences in the burden of illness, and health care disparities, which involve differences in the ability to use health care services. Blacks, Hispanics, Asian Americans and Native Americans continue to have a higher burden of illness and lower access to health care compared with Whites. Such disparities, which have become more apparent during COVID-19, extend to dementia care. Surveys commissioned by the Alzheimer's Association recently shed new light on the role of discrimination in dementia care, the varying levels of trust between racial and ethnic groups in medical research, and the differences between groups in their levels of concern about and awareness of Alzheimer's disease. These findings emphasize the need to increase racial and ethnic diversity in both the dementia care workforce and in Alzheimer's clinical trials.
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                Author and article information

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                Journal
                The Gerontologist
                Oxford University Press (OUP)
                0016-9013
                1758-5341
                October 05 2021
                October 05 2021
                Affiliations
                [1 ]Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia, USA
                Article
                10.1093/geront/gnab147
                34610111
                d9f83082-7f5d-4e46-8558-1def10564bd8
                © 2021

                https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model

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