Dementia Diagnosis Disparities by Race and Ethnicity

Lin, Pei‐Jung; Daly, Allan T.; Olchanski, Natalia; Cohen, Joshua T.; Neumann, Peter J.; Faul, Jessica D.; Fillit, Howard; Freund, Karen M.

doi:10.1097/mlr.0000000000001577

Cited by 118 publications

(93 citation statements)

References 47 publications

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“…But outside of research settings, a substantial portion of those who would meet the diagnostic criteria for Alzheimer's and other dementias are not diagnosed with dementia by a physician. [236][237][238][239][240][241] Furthermore, only about half of Medicare beneficiaries who have a diagnosis of Alzheimer's or another dementia in their Medicare billing records report being told of the diagnosis. [242][243][244][245][246] Because Alzheimer's dementia is often underdiagnosed -and if it is diagnosed by a clinician, people are often unaware of their diagnosis -a large portion of Americans with Alzheimer's may not know they have it.…”

Section: 13mentioning

confidence: 99%

“…306,313 There is evidence that missed or delayed diagnoses of Alzheimer's and other dementias are more common among Black and Hispanic older adults than among White older adults. 238,240,314,315 Based on data from Medicare beneficiaries age 65 and older, it has been estimated that Alzheimer's or another dementia has been diagnosed in 10.3% of White older adults, 12.2% of Hispanic older adults and 13.8% of Black older adults. 316 Although these percentages indicate that the dementia burden is greater among Black and Hispanic older adults than among White older adults, according to prevalence studies that detect all people who have dementia irrespective of their use of health care systems, the percentages should be even higher for Black and Hispanic older adults.…”

Section: 6mentioning

confidence: 99%

“…There is evidence that missed or delayed diagnoses of Alzheimer's and other dementias are more common among Black and Hispanic older adults than among White older adults 238,240,314,315 . Based on data from Medicare beneficiaries age 65 and older, it has been estimated that Alzheimer's or another dementia has been diagnosed in 10.3% of White older adults, 12.2% of Hispanic older adults and 13.8% of Black older adults 316 .…”

Section: Prevalencementioning

confidence: 99%

“…Prevalence studies such as CHAP and ADAMS are designed so that everyone in the study undergoes evaluation for dementia. But outside of research settings, a substantial portion of those who would meet the diagnostic criteria for Alzheimer's and other dementias are not diagnosed with dementia by a physician 236–241 . Furthermore, only about half of Medicare beneficiaries who have a diagnosis of Alzheimer's or another dementia in their Medicare billing records report being told of the diagnosis 242–246 .…”

Section: Prevalencementioning

confidence: 99%

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2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

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Section: 13mentioning

confidence: 99%

Section: 6mentioning

confidence: 99%

Section: Prevalencementioning

confidence: 99%

Section: Prevalencementioning

confidence: 99%

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2022 Alzheimer's disease facts and figures

2022

Alzheimer's & Dementia

1,549

664

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“…This is an important contribution to the literature, as this area is generally understudied. Some studies suggest that individuals identifying as Hispanic or black have missed or delayed dementia diagnoses and are often diagnosed at later stages (e.g., with worse cognitive function and more functional impairments) compared to individuals who identified as non-Hispanic white [ 49 ]. Additionally, while fewer than half of individuals with dementia reported being told their diagnosis by a physician regardless of background, proportions were lower for Hispanics and blacks than non-Hispanic whites [ 50 ].…”

Section: Discussionmentioning

confidence: 99%

Clinician approaches to communicating a dementia diagnosis: An interview study

et al. 2022

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Background Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter. Method Investigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data. Results Fifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as “memory disorder.” Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education. Conclusions Diverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

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Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia

et al. 2022

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Key Points Question How does use of hospice and hospital services at the end of life differ by race and ethnicity among patients with dementia? Findings This cohort study found that non-Hispanic Black and Hispanic decedents with dementia used less hospice but more emergency department and inpatient services, and incurred roughly 60% higher Medicare inpatient expenditures at the end of life, compared with non-Hispanic White decedents. The proportion of dementia beneficiaries completing advance care planning was significantly lower among non-Hispanic Black and Hispanic decedents compared with non-Hispanic White decedents. Meaning These results highlight the importance of understanding how end-of-life care utilization and treatment preferences among patients with dementia differ across racial and ethnic groups.

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Dementia Diagnosis Disparities by Race and Ethnicity

Abstract: Background: Dementia is often underdiagnosed, and self-reported data suggest that this problem may be more common among racial and ethnic minority groups. This study examined racial and ethnic disparities in the timeliness in which individuals receive a formal dementia diagnosis.

Cited by 118 publications

References 47 publications

2022 Alzheimer's disease facts and figures

2022 Alzheimer's disease facts and figures

Clinician approaches to communicating a dementia diagnosis: An interview study

Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia

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