ArticleJournal of the American Geriatrics Society2022
"Falling between the cracks": Experiences of Black dementia caregivers navigating U.S. health systems.
Article in Journal of the American Geriatrics Society, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 47 citations in OpenAlex.
- The Modified Caregiver Strain Index in Black and White Dementia Caregivers at Hospital Discharge.Clinical gerontologistTrial
- Dementia Family Caregivers' Involvement and Perceived Challenges in Health Care Interactions: Informing the GUIDE Model.Journal of general internal medicine · 2026Observational
- Dementia Caregivers' Preferences for Involvement in Delirium Care During Hospitalization.Journal of the American Geriatrics Society · 2026Article
- Assessing the Effects of Home-Based Primary Care on Alzheimer's Caregivers and Support Organizations: An Application of the Health Equity Implementation Framework.Qualitative health research · 2026Article
- Promoting Adaptation to Caregiving Challenges: A Qualitative Study of Dementia Caregiving Specialists.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2026Article
- Accessing Care Across Cultures: Qualitative Insights Into the Reality of Informal Caregivers From Ethnically Minoritised Groups.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Engaging Community Reviewers: The Geriatric Emergency Care Applied Research (2.0)-Advancing Dementia Care Network Approach.Journal of the American Geriatrics Society · 2025Article
- Perspectives of Former Caregivers of Black Older Adults Living With Dementia on Advance Care Planning.Journal of gerontological nursing · 2025Article
- Telephone-based mindfulness intervention positively impacts family communication and stress within rural, African American dementia caregiving teams.Aging & mental health · 2025Article
- A community-based participatory approach to delivering theFrontiers in public health · 2025Article
- Trend in Respite Use by Race Among Caregivers for People Living With Dementia.The journals of gerontology. Series A, Biological sciences and medical sciences · 2024Article
- "It Isn't What I Had to Do, It's What I Get to Do": The Experiences of Black Family Caregivers Managing Dementia.Journal of family nursing · 2024Article
- Mapping the evidence on dementia care pathways - A scoping review.BMC geriatrics · 2024Article
- Performance of the Modified Caregiver Strain Index in a Sample of Black and White Persons Living With Dementia and Their Caregivers.The Gerontologist · 2024Article
- "It shouldn't be like this": Family caregivers navigating insurance for family members with dementia.Journal of the American Geriatrics Society · 2024Article
- 2024 Alzheimer's disease facts and figures.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- The Interplay of Race, Ethnicity, and Language in Caregiver Health: Insights from the National Social Life, Health, and Aging Project.Research square · 2024Article
- Representing the Needs of Rural Caregivers of People Living With Alzheimer's Disease and Related Dementias Through User Personas.Innovation in aging · 2024Article
- Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review.BMJ open · 2023Article
- Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage.Journal of the American Geriatrics Society · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.