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. 2022 Jul 21;19(14):8865. doi: 10.3390/ijerph19148865

Table 1.

Study characteristics and findings.

References Study Location/
Recruitment Sites/
Age Range
Design/Population/
Sample Size
Ethnicity/Race/
Language
Key Findings
Clark
et al.
(2005)
[28]
U.S.
Community-based clinics (urban and suburban)
Cohort study
Patients with probable AD and primary family caregivers
n = 79 units
African Americans Time from noticing first AD signs to recognition
  • No difference urban vs. suburban

(Median 9 months (range 1–84) vs. 6 months (0–72))
Time from recognition to physician consultation:
  • No difference urban vs. suburban

(Median 3 months (0.2–84) vs. 2 months (0.1–48))
Longer delay in recognition associated with longer delay in physician consultation
Holsinger
et al.
(2011)
[29]
U.S.
2 sites: Clinics and community-based clinics (urban)
≥50 years
Cross-sectional study
Patients presenting for primary care appointments
n = 345
White vs. minority
Site 1 (n = 152): White 73%
Site 2 (n = 193): White 57%
Majority accepted screening
After exposing various potential risks and benefits, more accepted screening.
No difference between white and minority
Fowler
et al.
(2012)
[30]
U.S.
Community-based clinics (urban)
≥65 years
Cross-sectional study
Patients with no dementia receiving primary care
n = 554
White 41.5%, African Americans 56.5%
Other 1.4%
Majority willing to screen; 12.7% screened positive
Refusal rates did not vary with ethnicity, education, other SES.
Odds of refusal higher in older age groups
Fowler
et al.
(2015)
[31]
U.S.
2 sites
Clinic (urban) and community-based clinics (urban and suburban)
≥65 years
Cross-sectional study
Patients with no dementia receiving primary care
n = 400
Site 1 (n = 278): White 78.1%, African American 20.9%, Other 1.1%
Site 2 (n = 122): White 96.7%, African American 2.5%, Other 0.8%
English
Site 1:
No difference in acceptance and refusal between White and African Americas
Site 2: only one African American participant
No differences in refusal between two sites
Perceptions about the benefits of screening associated with acceptance of screening
No effect of sociodemographic data except education predicted acceptance
Savva
et al.
(2015)
[32]
U.S.
Nationwide
≥71 years
Cross-sectional study
Patients with dementia
Data source: ADAMS substudy from HRS
2000–2002 waves
n = 307
White 73%, Non-White 27%
English or Spanish
121 informants reported prior diagnosis
Grater CDC rate associated with prior diagnosis
Race or nursing home residency no link with prior diagnosis
Aged <90 years or married women associated with prior diagnosis.
¾ undiagnosed have mild dementia
Casado
et al.
(2017)
[33]
U.S.
Community (community outreach, local business sites, flyers, newsletters, social media)
≥40 years
Cross-sectional survey
Adults
n = 234
Korean Americans
English or Korean
20.7% reported having experience with caring for someone with AD.
Attitude scores were slightly more positive toward AD specialists (mean = 55.92 ± 7.40) than toward PCPs (mean = 54.24 ± 9.82).
Amjad
et al.
(2018)
[34]
U.S.
Nationwide
≥65 years
Cross-sectional observational study
Patients with probable dementia or proxy
Data source: NHATS
n = 585
Non-Hispanic White, non-Hispanic Black, Hispanic or other non-Hispanic (Asian, Pacific Islander, and Native American) 39.5% undiagnosed
Among diagnosed, 31% of those persons or their proxies were unaware of diagnosis.
Undiagnosed persons likely to be non-White and lower education.
But OR was statistically significant only for Hispanic/other non-White race
Majority of older adults with dementia either undiagnosed or unaware of the diagnosis
Harrawood
et al.
(2018)
[35]
U.S.
3 sites: clinic (urban) and community-based clinics (urban and suburban)
≥65 years
Cross-sectional study
Patients with no dementia receiving primary care
n = 954
African American 42.4% (n = 317): Site 1 (n = 280), Site 2 (n = 35), Site 3 (n = 2) 21.6% refused screening
78.4% agreed to be screened
10.2% screened positive: 11.7% African American; 9.0% White and other
Older age (>75 years) low education, and perceived problem with memory associated with screening positive but no effect from race and research sites.
Gianattasio
et al.
(2019)
[7]
U.S.
Nationwide
≥70 years
Longitudinal study
Patients with dementia
Data source: HRS biannual interviews with participants or proxy linked with Medicare claims
n = 4647–5201 (2000 to 2010, 6 observations)
Non-Hispanic White: 91–93%, Non-Hispanic Black: 7–9%
English or Spanish
Whites were “correctly diagnosed”
Blacks were “underdiagnosed”
Black had double the risk of underdiagnosed compare with White at all 6 waves
Risk of over diagnosed increased over time in both groups
Park
et al.
(2020)
[36]
U.S.
Community (urban, suburban, and rural)
>50 years
Cross-sectional study
Individuals with no dementia
n = 1043
White 82.7%, Black/African American 11.6%, Hispanic 1.2%, Asian 0.6%, Native Hawaiian/Pacific Islander 0.3%, American Indian 0.8%
English
In terms of demographic difference, female and participants with long-term care insurance have greater intention to screen but no mention about the effect of race.
Younger age, higher level of perceived barriers, perceived benefit, higher social support and self-efficacy associated with increased intention
Lin
et al.
(2021)
[37]
U.S.
Nationwide
≥70 years
Prospective cohort study
Patients with probable dementia
Data source: HRS 2000–2014 linked with Medicare and Medicaid
n = 3966
Non-Hispanic White 80.8%, non-Hispanic Black 11.9%, Hispanic 7.3%
English or Spanish
A higher proportion of Blacks and Hispanics had a missed/delayed clinical dementia diagnosis compared with White (46%, s = 54% vs. 41%)
Blacks and Hispanics had a poorer cognitive function and more functional limitations than White when received dementia diagnosis.
  • Estimated mean delay:

Blacks: 34.6 months; Hispanic 43.8 months; White: 31.2 months
Tsoy
et al.
(2021)
[38]
U.S.
Statewide
Retrospective cross-sectional study
Patients with no prior dementia or MCI
Data source: California CMS claims 2013–2015
n = 10,472
White 74.6%, Black 3.9%, Hispanic 12.0%, Asian 9.5% Incident MCI diagnosis
23.3% White, 18.28% Black, 12.3% Asian, 15.8% Hispanic
Timeliness of diagnosis
Asian, Blacks, and Hispanic less likely to receive an incident diagnosis of MCI vs. dementia than White
Estimated mean marginal effects of race/ethnicity on incident diagnosis of MCI were −11.0% for Asian, −6.6% for Hispanic, and −5.6% for Black
Wiese
et al.
(2019)
[39]
U.S.
Local service organizations, physician offices, church councils, senior center (rural)
Mixed methods
Stakeholders
-Social workers, healthcare administrators, nurses, nurses’ aides, physician, ministers, clerical worker, kitchen aids, farmworkers, auto mechanic, church worker
n = 21
Non-Hispanic White (n = 5): professionals 4, layperson 1
African American (n = 11): professionals 9, laypersons 2
Afro-Caribbean
(n = 2): professional 1, layperson 1
Hispanic American (n = 2): professional 1, layperson 1
English
81%: willing to screening annually if they developed memory problems or AD
85% of those previously screened would want to know if they were at higher risk of AD.
Wiese
et al.
(2021)
[40]
U.S.
Local city hall, senior centers, healthcare clinics, faith-based organizations (rural)
Mixed methods
Stakeholders
-Senior center administrators, senior center volunteer staffs, health clinic administrators, law enforcement officers, emergency medical technicians, physicians, nurse practitioners, nurses, paid caregivers, family caregivers, residents
n = 22
White (n = 21), African American (n = 1)
English
100%: willing to screening
82%: agreeable to blood testing
86%: agreeable to pictures of head or brain to detect dementia
All would want their provider to screen them annually for memory problems
Williams
et al.
(2010)
[41]
U.S.
Churches, senior centers, health fair (announcements and flyers)
Mixed method
Open-ended questions
A part memory screening study of 793 community dwelling older adults
n = 119
African American (n = 26)
Afro-Caribbean (n = 31)
European American (n = 29)
Hispanic American (n = 33)
English or Spanish
More African Americans recruited from churches than Hispanic and European American
89% valued the screening
92% would recommend screening to others
39% would seek professional help if they screened positive.
More Hispanic Americans (70%) planned to seek help than did than European Americans (35%), African Americans (31%), or Afro-Caribbean (16%).
Hinton
et al.
(2004)
[42]
U.S.
Community (urban)
(Physician
referrals, Alzheimer’s Association, newspaper advertisements, etc.)
Caregiver to patient ≥50 years
Qualitative Study
In-depth interview
A part of Survey Study: 33% of 117 family caregivers to community dwelling dementia patients
-Wife, daughters, sons, others
n = 39
African American (n = 10)
Chinese American (n = 14)
Anglo European-American (n = 15)
English or three Chinese dialects (Mandarin, Cantonese, and Toisanese)
Help-seeking was most often initiated by family members or formal care providers
Lack of a final diagnosis: more commonly reported by Chinese Americans compared with Anglos and African Americans
Fragmentation in the referral process was common across all groups.
Four general types of pathways to diagnosis:
Smooth pathways/fragmented pathways/crisis pathways/dead-ended pathways
Hugh
et al.
(2009)
[43]
U.S.
Community
(urban and rural)
(A dementia outreach partnership)
Qualitative study
Face-to-face semi-structured interview
Health belief model
Family caregivers of dementia patients
-Daughters, spouses, sons, siblings
n = 17
African American Not knowledgeable about AD prior to their family diagnosed
Knew that there is no known cure and expected a continued decline
Almost half attributed a change in cognition was normal, age-related memory loss
Some caregivers received support or resistance from other family member
A supportive social network facilitated a diagnosis.
Perplexing behavior and an increasing loss of ability are seen as cues to action
Leung
et al.
(2011)
[44]
Canada
Community and clinic (urban)
(Alzheimer’s Society, posters)
Patients: >55 years
Qualitative study
Semi-structured interview
Dyads of patients with dementia and family caregivers
-Caregivers: wives, daughter, son-in-law, husband
n = 6 dyads (7 caregivers)
Anglo-Canadian
English
Symptom recognition to a dementia diagnosis 2–4 years
Demented patients noticing memory difficulties earlier than careers but perceived as ambiguous and normalized or attributed to current health problem
Diagnosis process was multiple visits and interactions with health professionals, obtained as more severe cognitive deficit emerged
Koehn
et al.
(2012)
[45]
Canada
Community (urban)
(Chinese Resource Center of Alzheimer’s Society)
Qualitative study
Semi-structured interview
A Help-seeking Model
Dyads of patients with probable dementia and their careers
-Caregivers: wives, husband, daughter
n = 10 dyads
Chinese Canadian
Cantonese or Mandarin
The average pre-diagnosis interval: 1.5 years
Caregivers and patients reported a diversity of experiences regarding the early symptoms of the patients’ cognitive deficit.
Normalized of early symptoms
Decision to seek care was made by family member, either spouse or consulted with adult children
Two diagnosed done during acute care admission
The role of family caregivers was more influenced by structural factors than by traditional Chinese cultural norms about family responsibilities and filial piety.
60% of the dyads experienced delays in diagnosis because Chinese family doctors dismissed the caregivers’ appraisals of the patients’ symptoms. Gender-based power imbalance between female family caregivers and male Chinese Canadian physicians
McCleary et al. (2012)
[46]
Canada
Community (urban)
(Adult daycare center and flyers to community health center, local Alzheimer’s Society)
Patient: >70 years
Descriptive qualitative study
Semi-structured interview
Dyads of patients with dementia and either one or two of their family careers
-Caregivers: wives, daughters, daughter-in-law, husband, son, son-in-law
n = 6 dyads
South Asian-Canadian
English, Hindi, or Tamil
Early signs of dementia were seen as normal that are related to the aging process or patients’ personality characteristics.
Seek attention when dementia symptoms were worsened after episodes
Health seeking was delayed up to four years, even with significant dementia symptoms
Safety concerns, new symptoms, treatment for other health problem influenced the recognition of a health problem
Garcia
et al.
(2013)
[37]
Canada
Clinic setting
(a memory disorder clinic)
Patients: >60 years
Qualitative study
Semi-structured interview
Dyads of patients with dementia and family or friends
-Caregivers: spouses, daughters
n = 7 dyads
French-speaking Canadian
French
Estimated first suspicion of a problem to an official diagnosis: 1–7 years
Not easy to identify signs and symptoms
Lack of knowledge about the importance of the changes they were experiencing.
No single symptoms sufficient to alert participants
Preferentially sought from francophone
Recognition to consultation with family physician from 4 months to 6 years.
All final diagnoses were made by specialists, but family physicians clearly suspected dementia
Variety of reasons for the delay.

Abbreviations: AD, Alzheimer’s disease; ADAMS, Aging, Demographics and Memory Study; HRS, Health and Retirement Study; CDC, Centers for Disease Control and Prevention; PCP, primary care provider; NHATS, National Health and Aging Trends Study; OR, odds ratio; MCI, mild cognitive impairment; CMS, Centers for Medicare & Medicaid.