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Principal Investigator: Bryan David James
Organization: RUSH UNIVERSITY MEDICAL CENTER
Fiscal Year: 2024
Award: $575,478
Funding agency: National Institute on Aging
Project Summary / Abstract
The overarching goal of this project is to develop the evidence base around the predictors and consequences
of clinical underdiagnosis vs early clinical diagnosis of Alzheimer’s disease and related dementias (ADRD) in
healthcare settings. Many older persons who would meet diagnostic criteria for dementia—potentially more
than half—are underdiagnosed in the healthcare setting, meaning they are diagnosed by their provider years
after symptoms that meet criteria for dementia first emerge (i.e. late diagnosis) or are never diagnosed (i.e.
missed diagnosis). We know relatively little about the factors that drive the timing of receipt of a clinical
diagnosis of dementia. Advances in this area would allow us to address diagnostic disparities. In recent years,
there has also been a push for early clinical diagnosis of dementia (i.e. identifying persons with dementia close
to the time of symptom onset), despite lack of an effective disease-altering treatment for ADRD. The
importance of an early clinical dementia diagnosis would be bolstered by clear evidence that it led to better
long-term health for diagnosed patients, more appropriate healthcare utilization, or decreased medical costs.
Conversely, evidence of harms would suggest a renewed focus on improving dementia care is warranted.
However, the benefits and harms related to the timing of a clinical dementia diagnosis remain poorly
characterized. This project will address these crucial gaps in understanding by leveraging unique data from 5
diverse, harmonized cohorts of aging from the Rush Alzheimer’s Disease Center (RADC) with robust cognitive
assessment and linked Medicare claims records from 1991 to the present. This data is perfectly suited to these
aims, as study-based dementia ascertainment is frequent (annual) and classification of dementia is not
disclosed to participants—thus it is independent of clinical diagnosis in healthcare settings captured in the
Medicare claims. We propose to characterize the factors that make older adults with dementia more or less
likely to receive a clinical diagnosis around the time when they first meet criteria for ADRD (Aim 1), and to test
whether those with early diagnosis have better health outcomes (Aim 2), and more appropriate healthcare
utilization and less associated costs (Aim 3). These efforts are timely and have the potential to change public
perception, clinical practice, and health policy. Patients and medical providers will be able to make better
informed choices about when to seek or offer cognitive evaluation, while public health agencies, health
systems, and health insurers will be able to use our findings to decide whether and how to promote early
cognitive evaluation and diagnosis of dementia.
Terms: <AD dementia><AD related dementia><ADRD><Address><Advocacy><Aging><Alzheimer Type Dementia><Alzheimer disease dementia><Alzheimer sclerosis><Alzheimer syndrome><Alzheimer's><Alzheimer's Disease><Alzheimer's and related dementias><Alzheimer's disease and related dementia><Alzheimer's disease and related disorders><Alzheimer's disease or a related dementia><Alzheimer's disease or a related disorder><Alzheimer's disease or related dementia><Alzheimer's disease related dementia><Alzheimers Dementia><Amentia><Area><Autopsy><Black><Black race><Caring><Classification><Clinical><Cognitive><Communities><Costs and Benefits><Data><Data Set><Dementia><Diagnosis><Diagnosis disparity><Diagnostic disparity><Disabilities experience><Disease><Disorder><Disparity in diagnosis><ED visit><ER visit><Early Diagnosis><Education><Educational aspects><Emergency care visit><Emergency department visit><Emergency hospital visit><Emergency room visit><Emotional Depression><Enrollment><Ethnic Origin><Ethnicity><Evaluation><Family><Futility><Goals><Government><Health><Health Care Providers><Health Care Utilization><Health Insurance for Aged and Disabled, Title 18><Health Insurance for Disabled Title 18><Health Personnel><Health Policy><Health system><Healthcare><Healthcare Providers><Healthcare worker><Hospital Admission><Hospitalization><Incentives><Insurance Carriers><Insurers><Investments><Latino><Life><Link><Long-term cohort><Longitudinal cohort><Longterm cohort><Medical><Medical Care Costs><Medicare><Medicare claim><Non-governmental Organizations><Nongovernmental Organizations><Nursing Homes><Older Population><Outcome><Participant><Pathologic><Patients><Perception><Personal Satisfaction><Persons><Primary Senile Degenerative Dementia><Provider><Public Health><Race><Races><Records><Research><Symptoms><System><Systematics><Testing><Time><Title 18><Visit><clinical diagnosis><clinical practice><co-morbid><co-morbidity><cognitive assessment><cognitive testing><cohort><comorbidity><compare cost><cost><cost comparison><dementia care><depression symptom><depressive><depressive symptoms><diagnostic criteria><disability><early detection><enroll><evidence base><experience><falls><frailty><health care><health care personnel><health care policy><health care service use><health care service utilization><health care settings><health care worker><health insurance for disabled><health provider><health workforce><healthcare personnel><healthcare policy><healthcare service use><healthcare service utilization><healthcare settings><healthcare utilization><hospital re-admission><hospital readmission><improved><male><medical costs><medical expenses><medical personnel><mortality><necropsy><neuropathologic><neuropathological><neuropathology><nursing home><older adult><older adulthood><older groups><older individuals><older person><postmortem><primary degenerative dementia><racial><racial background><racial origin><re-admission><re-hospitalization><readmission><rehospitalization><senile dementia of the Alzheimer type><sex><treatment provider><well-being><wellbeing>