"At least we finally found out what it was": Dementia diagnosis in minoritized populations
Title
"At least we finally found out what it was": Dementia diagnosis in minoritized populations
Creator
Marcela D Blinka
Sneha Gundavarpu
Dorcas Baker
Roland J Thorpe Jr
Joseph J Gallo
Quincy M Samus
Halima Amjad
Date
2023
Description
Background: Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis.
Methods: Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods.
Results: Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms.
Conclusions: Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.
Methods: Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods.
Results: Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms.
Conclusions: Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.
Source
J Am Geriatr Soc
. 2023 Mar 13. doi: 10.1111/jgs.18329. Online ahead of print.
. 2023 Mar 13. doi: 10.1111/jgs.18329. Online ahead of print.
Language
English
URL
10.1111/jgs.18329
Citation
Marcela D Blinka et al., “"At least we finally found out what it was": Dementia diagnosis in minoritized populations,” NEOMED Bibliography Database, accessed April 28, 2024, https://neomed.omeka.net/items/show/12273.