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Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

Publication ,  Journal Article
McCarthy, EP; Lopez, RP; Hendricksen, M; Mazor, KM; Roach, A; Rogers, AH; Epps, F; Johnson, KS; Akunor, H; Mitchell, SL
Published in: J Am Geriatr Soc
June 2023

BACKGROUND: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. MATERIALS AND METHODS: Assessment 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. RESULTS: Among 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. CONCLUSIONS: This 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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Published In

J Am Geriatr Soc

DOI

EISSN

1532-5415

Publication Date

June 2023

Volume

71

Issue

6

Start / End Page

1759 / 1772

Location

United States

Related Subject Headings

  • Terminal Care
  • Proxy
  • Nursing Homes
  • Male
  • Humans
  • Geriatrics
  • Female
  • Dementia
  • Advance Directives
  • Advance Care Planning
 

Citation

APA
Chicago
ICMJE
MLA
NLM
McCarthy, E. P., Lopez, R. P., Hendricksen, M., Mazor, K. M., Roach, A., Rogers, A. H., … Mitchell, S. L. (2023). Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study. J Am Geriatr Soc, 71(6), 1759–1772. https://doi.org/10.1111/jgs.18303
McCarthy, Ellen P., Ruth Palan Lopez, Meghan Hendricksen, Kathleen M. Mazor, Ashley Roach, Anita Hendrix Rogers, Fayron Epps, Kimberly S. Johnson, Harriet Akunor, and Susan L. Mitchell. “Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.J Am Geriatr Soc 71, no. 6 (June 2023): 1759–72. https://doi.org/10.1111/jgs.18303.
McCarthy EP, Lopez RP, Hendricksen M, Mazor KM, Roach A, Rogers AH, et al. Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study. J Am Geriatr Soc. 2023 Jun;71(6):1759–72.
McCarthy, Ellen P., et al. “Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.J Am Geriatr Soc, vol. 71, no. 6, June 2023, pp. 1759–72. Pubmed, doi:10.1111/jgs.18303.
McCarthy EP, Lopez RP, Hendricksen M, Mazor KM, Roach A, Rogers AH, Epps F, Johnson KS, Akunor H, Mitchell SL. Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study. J Am Geriatr Soc. 2023 Jun;71(6):1759–1772.
Journal cover image

Published In

J Am Geriatr Soc

DOI

EISSN

1532-5415

Publication Date

June 2023

Volume

71

Issue

6

Start / End Page

1759 / 1772

Location

United States

Related Subject Headings

  • Terminal Care
  • Proxy
  • Nursing Homes
  • Male
  • Humans
  • Geriatrics
  • Female
  • Dementia
  • Advance Directives
  • Advance Care Planning