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

Brewster, Glenna; Bonds, Kalisha; McLennon, Susan M.; Moss, Karen; Epps, Fayron; Lopez, Ruth Palan

doi:10.1177/1074840720945329

Cited by 26 publications

(33 citation statements)

References 40 publications

(49 reference statements)

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“…Only recently have population-based studies examined racial disparities in caregiving for older people, and there is an ongoing need for culturally informed theories and research frameworks to guide future work in this critical area. 409 When compared with White caregivers, Black caregivers are more likely to provide more than 40 hours of care per week (54.3% versus 38.6%) and are also more likely to care for someone with dementia (31.7% versus 11.9%). Black dementia caregivers were found to be 69% less likely than White caregivers to use respite services.…”

Section: Race/ethnicity and Dementia Caregivingmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,250

348

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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 family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 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. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains 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%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. 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 $271.6 billion in 2021. 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. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

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Section: Race/ethnicity and Dementia Caregivingmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,250

348

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“…Much of the literature on caregiving has concentrated on spouses and adult child caregivers, frequently disregarding the true complexity of caregiving in contemporary families where norms of selected kin and complex and changing care networks are more common (Brewster et al, 2020; Russell, 2020). Acquiring a deeper and more nuanced understanding of the characteristics that distinguish extended carers from nuclear caregivers can provide crucial information for program development and implementation.…”

Section: Discussionmentioning

confidence: 99%

“…In recent years, greater recognition and attention has been given to the existence of multiple family structures that challenge and diverge from the ideal of who constitutes family and typical patterns of care (Brewster et al, 2020; Carr & Utz, 2020; Lin et al, 2018; Roberto & Blieszner, 2015). However, with few exceptions, most dementia family caregiving studies, regardless of sample size or design, include a relatively small number of extended family caregivers which has led investigators to exclusively focus on familial caregiving by either excluding other relatives from primary analyses or combining them into a single group of caregivers.…”

Section: Family Caregivingmentioning

confidence: 99%

Extended Family Caregivers for Persons Living With Dementia

Roberto

Savla

2022

J Fam Nurs

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Despite changes in the structure of contemporary families, little is known about extended family members—siblings, grandchildren, nieces/nephews, stepkin—who are primary caregivers for a relative living with dementia. Information about these caregivers is needed to help ensure their needs are understood by providers in health care and social service settings. The focus of this research was on the care situations of extended family caregivers and the impact of caregiving on their health and well-being. In Study 1, data from the National Study of Caregiving were used to describe the experiences of 107 extended family caregivers. In Study 2, case study techniques elicited additional information about the experiences of 10 extended family caregivers. Collectively, these caregivers provide care with little or no formal support and occasional help from a small informal network. Caregiving affected their physical and emotional health, depending on the strength of the relationship between the caregiver and the person living with dementia and the type of care provided. Findings contribute new knowledge about extended family caregivers and highlight the important role extended family dementia caregivers play and the challenges they face.

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“…In a recent meta-analysis of racial and ethnic dementia family caregiver interventions, African American dementia family caregivers possessed better psychological well-being on average in comparison to White caregivers (Liu et al, 2020). Further, subjective stress perceptions derived from African American caregivers’ qualitative interviews describe varied forms of caregiving hardship or negative aspects, juxtaposed with seemingly discordant quantitative survey responses indicating low burden or higher quality of life (Brewster et al, 2020a; Cothran et al, 2020). These important differences in subjective responses further demonstrate misalignment and a need for further investigation in research.…”

Section: Stress African American Caregivers and Health Outcomesmentioning

confidence: 99%

A Landscape of Subjective and Objective Stress in African-American Dementia Family Caregivers

et al. 2021

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Stress is a significant part of daily life, and systemic social inequities, such as racism and discrimination, are well-established contributors of chronic stress for African Americans. Added exposure to the stress of caregiving may exacerbate adverse health outcomes. This secondary analysis describes subjective and objective stress in African American family caregivers, and relationships of subjective and objective stress to health outcomes. Baseline data from 142 African American dementia family caregivers from the “Great Village” study were described using means and frequencies; regression models and Pearson’s correlation were used to examine associations between demographics, social determinants of health, and health outcomes. Mixed models were used to examine change and change variation in cortisol. Most caregivers had moderate degrees of stress. Stress was associated with sleep disruption and depressive symptoms, and discrimination appeared to be an independent contributor to depressive symptoms. This work provides a foundation for interpreting subjective and objective indicators of stress to tailor existing multicomponent interventions.

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

Cited by 26 publications

References 40 publications

2022 Alzheimer's disease facts and figures

2022 Alzheimer's disease facts and figures

Extended Family Caregivers for Persons Living With Dementia

A Landscape of Subjective and Objective Stress in African-American Dementia Family Caregivers

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