“At least we finally found out what it was”: Dementia diagnosis in minoritized populations

Abstract

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.

Persons living with dementia and caregivers' communication preferences for receiving a dementia diagnosis

“…Although participants agreed it is important for clinicians to communicate the diagnosis clearly, PLWD/caregivers views differed on the amount or type of detail needed for clarity, including whether a specific etiology (i.e., “Alzheimer's disease”) is needed for the diagnosis to be considered clear or helpful [ 6 , 18 ]. Some PLWD and caregivers may view the term “Alzheimer's disease” as stigmatizing as opposed to helpful [ 18 , [26] , [27] , [28] , [29] , [30] ], though clinician guidelines recommend giving a specific etiology during diagnosis [ 3 ].…”

“…As the number of individuals living with dementia due to Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRDs) increases, so does the need to understand how clinicians can best communicate a diagnosis to persons living with dementia (PLWD) and their caregivers (often family members) [ 1 ]. Receiving a timely diagnosis can validate PLWD experiences and family concerns; allows PLWD and families to access pharmacologic and non-pharmacologic interventions to help with symptoms and quality of life, and offers opportunities for advanced care planning [ [2] , [3] , [4] , [5] , [6] ]. Furthermore, how the diagnosis is communicated by clinicians is an important factor that impacts patient-and-caregiver-reported outcomes like trust and rapport, satisfaction, and psychological distress following disclosure [ [7] , [8] , [9] ].…”

“…Furthermore, caregivers may be unclear about their role in the interaction [ 20 ], and clinicians can find it difficult to balance both patient and caregiver needs and goals while meeting tight clinical schedules [ [21] , [22] , [23] ]. Lastly, there are cultural considerations, as ethnic/racial underrepresented groups often report higher amounts of stigma regarding dementia within their families and communities and greater mistrust in the healthcare system [ 6 ].…”

“…Existing clinician guidelines for disclosing a dementia include incorporating family members and using effective communication [ 3 , 24 ], but it is unclear whether or how these guidelines are implemented or reflect current PLWD and caregiver preferences [ 11 , 25 ]. For instance, some clinical recommendations conflict with nuanced PLWD and caregiver views, such as terminology to use when disclosing a diagnosis (i.e., more general term such as “dementia” or referencing suspected pathologies like Alzheimer's disease) [ 3 , 6 , 18 , [26] , [27] , [28] , [29] , [30] ]. Person-centered communication that accounts for PLWD and caregiver perspectives is needed [ 12 , 24 ], yet research on clinical dementia communication often focuses on clinician perspectives [ 21 , [31] , [32] , [33] , [34] ], or uses audio/video recordings of clinical visits to describe what happens as opposed to investigating what PLWD/caregivers prefer [ 23 , 35 , 36 ].…”

Modeling Early Detection and Geographic Variation in Health System Capacity for Alzheimer's Disease–Modifying Therapies

“…Factors affecting patient care-seeking for diagnosis include attitudes toward dementia, including stigma and problems with communication, as well as physicians' lack of knowledge and concerns about misdiagnosis (Bradford et al, 2009). These factors contribute to the underdiagnosis of dementia, with potentially more than 50 percent of people with dementia not receiving cognitive evaluations (Boustani et al, 2003;Kotagal et al, 2015), and missed or delayed diagnoses are even more common among minority populations (Amjad et al, 2018;Blinka et al, 2023;Lin et al, 2020). Very early detection of cognitive impairment is limited because cognitive assessments are typically initiated after subjective memory complaints and/or observations of cognitive impairment by family or friends.…”