“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 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.

INTRODUCTION

With increasing racial and ethnic diversity in the United States,¹ the growing population of people living with dementia (PLWD) is increasingly diverse.² Dementia prevalence is higher among Black/African American and Hispanic older adults than in other groups.^2,3 Underdiagnosis of dementia is common across groups^4,5 though certain minoritized populations are more likely to experience missed and/or delayed dementia diagnoses.^6–9 A dementia diagnosis may benefit care partners, as it facilitates a better understanding of the PLWD, more timely identification of reversible conditions, earlier consideration of medications and non-pharmacological interventions, validation of patient/family concerns, and planning current and future care.^10–13

Given underdiagnosis and the growing diversity of PLWD, research into barriers and facilitators of dementia diagnoses in minoritized populations is urgent. Prior research found that minoritized groups face individual, provider, and systemic barriers to receiving diagnosis and care for many reasons, including normalization of memory loss as part of aging, stigma surrounding mental illness, clinical visit time constraints, distrust of healthcare providers, and racism/discrimination.^14–17 Within the National Institute on Aging (NIA) health disparities framework, biological, behavioral, sociocultural, and environmental factors likely contribute to disparities in diagnosis.¹⁸ Research into these factors, particularly in the United States, is limited, and most studies were conducted before dementia awareness initiatives^{8,10,14–16,19–25} such as the National Plan to Address Alzheimer’s Disease²⁶ and the CDC Brain Health Initiative.²⁷ Perspectives of PLWD and their families are also needed; most studies demonstrating missed or delayed dementia diagnoses in minoritized PLWD use medical records or administrative claims to make this assessment but do not consider whether PLWD or families perceive delays in diagnosis.^6–9 Lived experiences and perspectives on diagnosis, including benefits and harms, are important to truly understand whether diagnosis should be made sooner. Though evidence of benefits and harms of screening for cognitive impairment in older adults has been deemed insufficient,²⁸ Medicare initiatives such as the Annual Wellness Visit promote screening and early detection.²⁹ The potential effects of such initiatives on a diverse population are not clear.

Understanding dementia experiences of minoritized communities, including why, when, and how diagnoses occur, is essential to improve diagnosis and better tailor care for diverse PLWD. The timing, benefits, and harms of diagnosis also carry implications for screening and early detection. The objective of this study was to identify factors delaying or facilitating diagnosis in minoritized PLWD and elicit care partner perspectives on the timing and effects of diagnosis.

METHODS

Participant recruitment

Convenience sampling was used to recruit care partners in the greater Maryland region using several strategies. First, we contacted previous care partner participants of a dementia care coordination study who gave permission to be contacted for future studies.^30–32 Second, we posted flyers in a memory clinic waiting room and distributed flyers electronically through the state Alzheimer’s Association. Lastly, we identified potentially eligible memory clinic patients who agreed to be contacted about research studies. Care partners were contacted by phone and provided oral consent. Care partners were eligible if they were ≥ 18 years old, provided care for a minoritized adult age 60 or older who had a dementia diagnosis, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. For each care partner who agreed to participate, we approached the PLWD to determine whether they would also participate in the interview and/or provide oral consent or assent for care partner participation (PLWD was considered a participant even if unable to participate in the interview). Where possible, we obtained consent from the PLWD; otherwise we obtained consent from their legally authorized representative. The study was approved by the Johns Hopkins Medicine Institutional Review Board IRB00188310.

Semi-structured interviews

The interview guide (Supplementary Appendix 1) was developed based on literature review, clinical experience, study aims, and expert feedback. One investigator (MDB [Latino ethnicity], or, HA [Asian race]) conducted interviews in-person with 19 care partners and three PLWDs, typically at their home. One interview was conducted by telephone due to the COVID-19 pandemic. Interviews occurred from July 2019 to June 2020 and lasted 45 minutes to two hours. Interviewer and participant pairing was based on availability such that race or ethnicity concordance was present for a minority of interviews. Following the interview, care partners completed short surveys assessing care partner and PLWD demographics and select aspects of their dementia diagnosis experience.

Data analysis

Audio recordings were transcribed verbatim, cleaned, and checked for accuracy. Interview transcripts were coded for thematic content using NVivo qualitative data analysis software (QSR International Pty Ltd. Version 12, 2018). Qualitative content analysis methods were used for data analysis.³³ Three study team members (MDB, SG, HA) independently identified initial codes using the interview guide and emerging data, which were then revised based on additional interviews. Using the resulting codebook, each investigator independently coded all interviews. Coding discrepancies were resolved by discussion and consensus among the three investigators. Coded data were then analyzed to identify themes that were compared and discussed during regularly held meetings until no new themes were identified, and 100% agreement was reached. We used the NIA health disparities research framework¹⁸ during data analysis to identify and organize factors affecting the dementia diagnosis experience. Data were analyzed as care partner perspectives as only one of the three PLWD who participated was able to meaningfully share their perspective; most interviews were care partner only.

Results were reviewed by the research team, which included individuals of all race and ethnicity groups participating in the study and individuals who met study inclusion criteria. Rigor was enhanced by the varying backgrounds of the research team (interdisciplinary triangulation).³⁴ Notes were kept documenting research team discussions. A consolidated criteria for reporting qualitative studies (COREQ) checklist and additional methods are available in Supplemental Materials (Supplementary Table S1, Supplementary Methods).

RESULTS

Participant characteristics

Participants had 117 cumulative years of dementia experience with the 18 PLWDs. Care partners were mostly female (n=15) and African American (n=11), with a mean age of 61.6 years (Table 1). Most had at least a college education (n=17) and were caring for a parent (n=15). Care partner and PLWD race/ethnicity were concordant except for two care partners who identified as mixed race. The PLWD were mostly female (n=13) and African American (n=11). Four PLWD were Asian, born in three South and Southeast Asian countries. Three PLWD were Hispanic, born in three Central and South American countries. The mean age at diagnosis was 76 years old (SD=9.2); few (n=5) lived alone at the time of diagnosis. Most PLWD were diagnosed by a specialist (72%). On average, an estimated 17 months elapsed between families noticing symptoms and diagnosis (SD=10.7). For the PLWD with two participating care partners, the primary care partner was a spouse and the secondary care partner was a daughter.

Table 1.

Care partner and person living with dementia (PLWD) characteristics (N=18)

Characteristic	Care partner, mean (range) or N (%)	PLWD, mean (range) or N (%)
Current age, years	61.6 (47–84)	83 (69–97)
Age at diagnosis, years	---	76 (63–90)
Female sex	15 (83)	13 (72)
Education  Elementary or middle school  High school  College or more	1 (6) 0 (0) 17 (94)	3 (17) 7 (38) 8 (44)
Relationship to PLWD  Spouse/partner  Child  Other relative	2 (11) 15 (83) 1 (6)	---
Race  White/Caucasian  Black/African American  Asian  Mixed or not specified	1 (6) 11 (61) 4 (22) 2 (11)	1 (6) 11 (61) 4 (22) 2 (11)
Hispanic/Latino Ethnicity	3 (17)	3 (17)
Clinical and healthcare factors
Time from symptoms to diagnosis	---	17 (0.5–36)
Time since diagnosis, years	---	6.5 (2–17)
Clinician who made diagnosis   Primary care physician   Specialist	---	5 (28) 13 (72)
Care partner present at time of diagnosis	---	13 (72)

Note: Characteristics shown for the 18 primary care partners in the study

Themes

Three overarching themes were identified: 1) a range of biological, sociocultural, behavioral, and environmental factors affect dementia diagnosis, 2) mixed perceptions of appropriate versus delayed diagnosis timing, and 3) positive reactions and benefits of diagnosis outweigh negative reactions and harms.

Theme 1: Factors affecting dementia diagnosis

“It wasn’t drastic or anything. This has been a real slow process” (AA [African American], F [female], Child)

We identified 14 factors categorized as biological, sociocultural, behavioral or environmental, affecting dementia diagnosis timing and experience (Figure 1). Tables 2, 3, and 4 include representative quotes for each factor.

Figure 1.

Factors affecting dementia diagnosis experience and timing among minoritized older adults living with dementia organized within the NIA Health Disparities Research Framework with representative quotes

Table 2.

Biological Factors Affecting Dementia Diagnosis and Representative Quotes

Factor	Quote
Subtle memory loss requiring worsening or turning point	“The memory loss was like the last thing I noticed.” AA, F, Child
	“I began to notice her asking questions over and over again. Just her whole behavior started to change, and I became more of a caregiver for her. It wasn’t drastic or anything. This has been a real slow process.” AA, F, Child
	“Like I just spoke to you yesterday to tell you I was back. You asked how the trip was. We talked a few minutes. So having the conversation the next day was a big red flag for me.” AA, F child
Non-cognitive symptoms first	“Well when I first noticed the symptoms of losing stuff and hiding her purse, I took her in like two weeks later but as far as the anxiety and depression, because I didn’t relate that to her having Alzheimer’s, I would say that went on for years.” AA, F, Child
Comorbidities, complications, and geriatric syndromes	“I started realizing like, well, she may have lost all this weight because she thought she ate…I mean she completely said she had finished that, and it was still sitting there.” AA, F, Child
	“There was a lot of physical things that were happening at the same too, like imbalance in walking…there were several falls that occurred.” Asian, F, Child

Table 3.

Sociocultural Factors Affecting Dementia Diagnosis and Representative Quotes

Factor	Quote
Secrecy and stigma	“Well, our culture is a secret society. <laughs> It is a secret society that if anything bad goes on in your family, whether it’s an illness, whether it’s going to jail, whether your nephew doesn’t pay child support.” AA, F, Child
	“So I wish that people are more forthcoming about the problems as we are with physical problems. Somehow there is a bit more stigma associated to these kinds of things, and it’s more like “No, no, we don’t talk about it.” Asian, F, Child
	“…the reality is that there’s still quite a stigma and nobody wants to be attached to it.” AA, F, Child
Prior dementia experience	“You know, people didn’t talk about Alzheimer’s…there was no background information or context for us to go on. AA, F, Spouse
	“Since this happened to him…I’ve also been made aware that he had a sister who had Alzheimer’s. I’ve been made aware that his father had it, but it was never discussed.” AA, F, Spouse
Respect for elders	“Culturally, that’s not what you do. You would never go and disrespect somebody by saying, ‘Oh, you know, they have Alzheimer’s. It’s a mental health condition.’ No you never say that.” AA, F, Child
Knowledge or views on dementia as disease	“From my understanding, it has to do with memory loss, constantly repeat yourself, can’t remember what you said 20 minutes to a hour ago, which you should, I think. Next-day memory, that’s a little far, but you should, and then I think dementia has a play in age. It has to do with age in some cases. …That’s what I take from it, that you do a lot of constant repeating yourself because you can’t remember this and that, and then a couple hours later you can’t remember what you said so many hours...” AA, M, Child “I don’t think the stigma within the African American community as much as it is…for a good chunk, I’d say over 50%, I think that a lot of African Americans in general don’t know enough about it to even have an opinion on it. So when we deal with the fact that our grandmothers, our great grandmas, our aunties…or, you know, the elders of the church…just have these peculiar ways about them, we accept it as you’ve got peculiar ways about you.” AA, F, Child
Normalization of “senility”	“Our culture is very forgiving and very understanding…this like to them is a normal journey. Like when you get old you get senile.” Asian, F, Child
	“They don’t even say Alzheimer’s, they call it Old Timers. They would never call it Alzheimer’s. And it basically means they’ve got dementia or they’re peculiar because they’re older. That’s what you hear culturally.” AA, F, Child

Note: Several of the representative quotes reflect secrecy and stigma in addition to the listed subtheme.

Table 4.

Behavioral and Environmental Factors Affecting Dementia Diagnosis and Representative Quotes

Subtheme Factor	Quote
Problem solving	“When I came along, the first thing I did was I took her to a primary care doctor because I wanted to know everything from the blood, the urine, the test.” AA, F, Child
Lack of dementia screening	“If part of standard healthcare was the same way they’re like, oh, women you need a mammogram every year after you hit a certain age…why can’t after a certain year, we check for Alzheimer’s? Because it’s here whether we deal with it or not.” AA, F, Child
Primary care access, rapport, and trust	“We don’t trust doctors. So, we don’t go to the doctor.” AA, M, Child “… he told me that they had diagnosed my father. He said “No one had ever told you that?” I said “No,” so I don’t know. He read it in his charts … he was diagnosed with vascular dementia … they were students. They change and rotate, so he had no continuity…” AA, F, Child
Specialist access	“There’s something going on, and I know, and I just mentioned it to her primary care physician at the time, and he recommended that I take her to a neurologist.” AA, F, Child
Cultural sensitivity, language	“Your types of things that you would ask her to repeat and all that, I mean she has not heard those things before…So I think yeah, those things are stacked against her.” Asian, M, Child
	“If we had found a doctor who speaks Spanish and was able to relate more especially with the patient…we couldn’t find any. That makes it worse in the sense that the doctors could not relate with her as well as they could’ve if it had been her own language.” Hispanic, M, Spouse
Racism in healthcare	“If you have doctors who have a different perception of people, they may not give you everything or they may not have studied or cared to let you know things.” AA, F, Child

Three biological factors relate to how the clinical presentation delayed or complicated recognition and diagnosis of dementia (Table 2). Most caregivers reported that symptoms were subtle, and it took them time to recognize that symptoms might be more than normal aging. While memory loss was the most common early symptom, onset was often subtle and slow or initially perceived to be simple forgetfulness or aging. Worsening symptoms or a turning point were frequently required before families recognized the significance of their observations. Participants used phrases such as “what really cinched it” (AA, F, Child), “stuck out like a sore thumb, … big red flag,” (AA, F, Child), and “tipping point” (Hispanic, F, Child) as they recalled incidents such as the PLWD forgetting meetings, planned events, or familiar travel routes. Several care partners noted non-cognitive symptoms first, such as paranoia, anxiety, or uncharacteristic anger. One care partner sought evaluation soon after noticing cognitive changes but noted neuropsychiatric symptoms earlier. Comorbidities, dementia complications, and geriatric syndromes such as weight loss, falls, stroke, or delirium sometimes complicated diagnoses. One participant thought her mother’s weight loss signified cancer and was surprised by a dementia diagnosis.

Sociocultural factors also affected dementia diagnosis (Table 3). Several African American and Asian care partners felt their communities hid dementia diagnoses, noting secrecy and stigma. In particular, younger African-American participants felt their families kept dementia diagnoses quiet and private. Respect for elders, combined with stigma, also inhibited families from labeling dementia. Other care partners had prior dementia experience through relatives or by working with PLWD, but still found it challenging to recognize it in their immediate family. For several participants, their loved ones’ diagnosis led to their discovery that other relatives had dementia; prior experience was thus not always recognized. Lack of knowledge of dementia and normalization of “senility”, with expectations of changes in memory and personality with age, was also noted.

Both environmental and behavioral factors were recognized (Table 4). Most care partners sought medical input from the primary care provider (PCP) once family noted significant or worsening symptoms. Diagnoses were family-initiated, with concerns raised by family and not by the clinician or health system. Several participants felt screening for dementia should be routine. Most care partners valued longstanding relationships with their PCP and found the PCP was supportive in the diagnosis process and provided expected referrals. Diagnoses, however, were ultimately confirmed by a specialist. All PLWD in this study had dementia specialist access, seeing a neurologist, psychiatrist, or geriatrician before or after diagnosis. In select instances, care partners felt the PCP should have seen the symptoms earlier and even switched PCPs due to dissatisfaction. A few care partners noted avoidance in going to the doctor due to mistrust of the healthcare system.

Asian and Hispanic care partners, particularly for PLWD for whom English was a second language, felt that aspects of the dementia diagnosis process, including cognitive testing, were not culturally sensitive. For some care partners, the practice of separating the PLWD and family added stress, and terminology commonly used in cognitive testing was unfamiliar or unknown to the PLWD. Most participants did not express concerns that race, ethnicity, or culture affected diagnosis timing or experience. However, racism and cultural challenges after diagnosis were raised. A few African American participants discussed how racism affects healthcare in general and sharing of and access to resources. Several participants were upset by clinicians suggesting they move the PLWD to a nursing home without prompting.

Theme 2: Diagnosis timing

“I just felt like it took too long to put the pieces together.” (AA, F, Child)

Care partners were divided in their perceptions of diagnosis timeliness. Nine participants (50%) described the diagnosis as late: “… but I guess the best that we could have done…those eye-opening things that happened, we found out pretty soon after that, but all the kind of questionable things that happened before that-- it just wasn’t obvious...” (AA, F, Child). Eight care partners (44%) felt the dementia diagnosis was timely. One felt the diagnosis was made too soon. Perceptions of timeliness differed across care partners reporting the same time from symptom onset to diagnosis.

About one-third of participants felt it would not have made any difference if diagnosis was made earlier, including four of the nine who felt diagnosis was late. “They got the diagnosis six years earlier before he actually started really exhibiting major, major symptoms and they didn’t do anything, so I don’t know if that would have done anything different.” (AA, F, Child). For several participants, this perception was related to lack of effective treatments: “No. … there’s actually nothing you can do …it’s a process that is not reversible. There’s nothing you can do to stop it.” (Hispanic, M, Spouse). Another care partner responded, “No. I mean, I don’t know, because, like I said, cognitively and even after… it still has to run its course.” (AA, F, Child).

Other participants remarked that earlier diagnosis would have given them more time to adapt and prepare for the situation: “Yeah, I mean, probably I would’ve did more research or would’ve contacted [the] County Office of Aging, which I did later when it was diagnosed, to find out which services were available or what training or what seminars or things that I could go to so I can better understand what’s happening to her…so I can better take care of her.” (AA, F, Child). Others indicated they would have been more watchful of cognitive, functional, and behavioral changes and adequacy of care and support. One participant described lost opportunities: “We could have done…a lot of things that make memories while he has the capacity to make memories.” (AA, F, Child). Many care partners wished they had taken a more hands-on approach to care earlier. A few participants felt earlier treatment could have slowed cognitive or overall declines in health “Maybe the rapid decline in health wouldn’t have happened.” (Asian, F, Child).

Theme 3: Reactions to and benefits versus harms of diagnosis

“At least we finally found out what it was” (Hispanic, M, Spouse)

Reactions and responses of care partners and families to dementia diagnoses varied. Some care partners experienced more family unity: “I called my brothers and sisters and we kept a better eye on her.” (AA, F, Child). Some families modified living situations or put affairs in order. Others focused on providing appropriate medication, monitoring, and educating themselves. A few families disagreed over the diagnosis and did not support the PLWD and care partner; two care partners shared concern for others taking financial advantage of the PLWD. Some were shocked by the diagnosis, having no prior dementia experience. Others found diagnosis did not change their caregiving activities. Most participants felt that it was their turn to act as a caregiver, wanting to provide care at home, and if possible, enlisting help from their entire family: “They helped me when I needed them, so now it’s my turn”. (Hispanic, F, Niece). There was a strong sentiment of service and duty to care for older family members across all groups.

Nearly all participants felt obtaining a dementia diagnosis was beneficial in naming and validating what was happening: “Well, it was, I would say, good. Not good, but it was something that at least we finally found out what it was because before we were not sure what the problem was. Now, we know how we have to deal with it.” (Hispanic, M, Spouse). Diagnosis allowed families to plan and understand what to expect: “I knew what road I was going down. Had I not had that diagnosis…That would be a disaster. So at least I know, based on that diagnosis, what road I was going down.” (AA, F, Child). The diagnosis itself was not perceived as harmful; rather the longer-term impact of dementia in disrupting life plans was harmful: “It was a real jolt of reality and I felt like my world had just—This was not what I planned.” (AA, F, Child). Upon diagnosis, many participants felt “stressed out” or “frightened” about the future, related to caregiving, financial impact, and their own dementia risk, but otherwise did not report harms of diagnosis.

The observed reactions of PLWD to diagnosis varied; typically, participants perceived the PLWD as being in denial, apathetic, or unaware or not understanding of the diagnosis. One participant shared, “I don’t think she even realized what the doctor was saying.” (AA, F, Child). Another commented, “It really didn’t faze him.” (AA, F, Child). A few care partners shared that the PLWD seemed upset or scared, felt degraded, or had a sense something was wrong during the diagnosis process. Care partners commonly observed the PLWD was frustrated with their cognitive symptoms.

DISCUSSION

Reflecting upon 100+ years of lived dementia experience, 19 African American, Hispanic, and Asian dementia care partners in this study consider the benefits of dementia diagnosis to outweigh harms. Their experiences highlight continued barriers to diagnosis: subtle or slow nature of symptoms, early symptoms not attributed to dementia, secrecy and stigma around Alzheimer’s and dementia, normalization of cognitive or behavioral changes, and inadequate dementia detection without family prompting. Proactive family problem solving, established primary care relationships, and specialist access facilitates diagnosis. Similar proportions of minoritized care partners feel dementia diagnosis was delayed versus appropriately timed. Many care partners feel earlier diagnosis would not have changed outcomes, but acknowledge that earlier dementia diagnoses would have been beneficial in allowing them to adapt to the situation sooner, proactively monitor for changes or safety, prepare for the future, and make more meaningful use of time with the PLWD. Diagnosis enabled families to understand what was happening and often brought them together to support the PLWD and/or educate themselves.

Our findings mirror studies conducted in other countries or regions of the United States, in prior time periods (before efforts to increase public awareness of dementia), and other populations (White or mixed White and minoritized populations).^{14–16,21–25,35–37} Almost universally, the nature of dementia symptoms and misattribution of symptoms affects when families seek diagnosis, often requiring a trigger or tipping point event.^22,23,25,38 Problem solving by care partners has previously been classified as help-seeking behavior^14,21,25 and forced advocacy¹⁶ given lack of clinician-initiated screening or evaluation. Stigma, secrecy, prior dementia knowledge, and perceptions or normalization of dementia and memory loss,^{10,14,15,22–25,38–41} as well as racism and cultural barriers have been noted.^{15,16,21,23,24,42} Most participants in this study did not report that racism or discrimination affected diagnosis timing or experience; adverse healthcare experiences during the diagnosis process were infrequently reported. Racism and cultural challenges were more frequently raised in the context of care after diagnosis, particularly in clinician interactions or assumptions regarding care plans. Finding diagnosis helpful with little harm also reflects previous studies,^;37,43 select studies found some individuals find diagnosis to be purposeless and traumatic.^14,38

This study updates the literature on dementia diagnosis in minoritized populations in the United States and adds to knowledge of within-group experiences and variation. Identifying perceptions of timeliness and whether earlier diagnosis would change outcomes is novel. Epidemiologic studies find diagnosis to be delayed or dementia to be more severe at diagnosis in Black and Hispanic populations.^6–8,20 Whether these populations feel diagnosis is delayed is crucial, especially in the absence of disease-modifying treatments. We find that half of participants did not feel diagnosis was delayed, and many who would have preferred earlier diagnosis did not feel outcomes would have differed. It may be that expectations of caring for aging family members, combined with normalization of memory loss, affect thresholds for when diagnosis is sought.

While many care partners feel earlier diagnosis would not have changed outcomes, it is possible that challenges noted before diagnosis could be mitigated by earlier diagnosis, education, and support (e.g., care partner distress over PLWD memory loss, neuropsychiatric symptoms, dementia-related complications or geriatric syndromes, safety concerns). Research that systematically examines modifiable adverse outcomes and challenges before dementia diagnosis and impact of diagnosis on these challenges could further identify benefits of earlier diagnosis.

Advancing awareness of symptoms and normalizing discussions about brain health in public health messaging, healthcare encounters, and community-led public health interventions may address barriers related to biological and sociocultural factors. Systematic, equitable proactive detection of dementia in primary care, including through Annual Wellness Visits may address behavioral and healthcare environment barriers and facilitators. Our findings highlight the important role of PCPs in dementia diagnosis. PCPs and other front-line providers may benefit from training to identify early signs of dementia, including monitoring for and educating older patients and families on non-cognitive symptoms, turning points, or significant cognitive symptoms. Welcoming family member input into medical care and thorough discussion, evaluation, and/or referrals when family raises concerns should be encouraged. Interventions at the systems level can track and reward clinician-level strategies and training.⁴⁴

Our study has limitations. We did not examine all possible factors affecting dementia diagnosis; results highlight issues identified without significant prompting. Due to study design and participants, we cannot comment on the role of socioeconomic status, geographic variation, and language barriers, which may affect diagnosis timing and experience.⁹ Our results transfer only to the specific racial and ethnic groups included, care partners with high education levels, and individuals/regions with access to primary and specialty care. The study does facilitate understanding of potential race and culture effects by limiting variation in other characteristics. Future research should focus on individuals with differing education levels, language preferences, and access to care. While participants shared perspectives on individual-level effects of race and culture on diagnosis, we did not examine structural or institutional racism. Focus groups or engagement over time could also facilitate greater comfort sharing insights on effects of race and culture; research on institutional racism might include broader participants (e.g. healthcare providers, social workers, other community members and leaders). We cannot directly compare minoritized to White PLWD/family experiences. Recommended approaches for advancing equity in dementia care include within-group research and increasing minoritized representation in research, which our sample allows.⁴⁵ Further research within sub-groups, such as within race, ethnicity, or familial relationships, is needed, with comparisons facilitated by mixed methods. Lastly, research centering voices of minoritized PLWD, and not only care partners, is needed.

Care partners of minoritized PLWD, including care partners who are highly educated and proactive, experience barriers to timely diagnosis of dementia. They find diagnosis helpful to understand current and future needs, with greater benefit than harm. Multi-level strategies to address barriers to dementia diagnosis are required to ensure equitable diagnosis, ideally linked to high-quality care, for increasingly diverse older adults in the United States.

Key Points

• Numerous, multilevel barriers to dementia diagnosis persist among minoritized older adults living with dementia.

• Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes.

• A dementia diagnosis helped families understand and support the person living with dementia.

Why does this paper matter?

Understanding the experience of dementia diagnosis among minoritized older adults and caregivers, including barriers and facilitators of diagnosis, timing, and benefits versus harms, is essential to ensure public health, health system, and clinician-level strategies to address disparities in dementia diagnosis are effective and patient/family-centered.