ArticleJournal of the American Geriatrics Society2023
Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.
Article in Journal of the American Geriatrics Society, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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The trial behind it
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Who cites it
6 citing papers in PubMed, 11 citations in OpenAlex.
- Talking about the hypothetical future: Serious illness communication for residents living with dementia in long-term care homes - An integrative review.Palliative care and social practice · 2026Review
- Factors Influencing the Implementation of Non-Pharmacological Interventions for Behavioural and Psychological Symptoms of Dementia in Residential Aged-Care Homes: A Systematic Review and Qualitative Evidence Synthesis: A systematic review.Campbell systematic reviews · 2025Review
- Use of Feeding Tubes Among Hospitalized Older Adults With Dementia.JAMA network open · 2025Article
- Eating and swallowing care disparities in persons with dementia: A conceptual framework.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review.BMC palliative care · 2024Article
- Pre-hospitalization dysphagia and feeding tube placement in nursing home residents with advanced dementia.Journal of the American Geriatrics Society · 2024Article
Corrections and comments
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Authors and funding
10 authors at 8 institutions in 1 country.
Funding
Abstract
backgroundRegional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND
methodsAssessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021.
resultsAmong 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race.
conclusionsThis report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.
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