Dementia diagnosis and utilization patterns in a racially diverse population within an integrated health care delivery system
Open accessAbstract
Introduction: In an effort to identify improvement opportunities for earlier dementia detection and care within a large, integrated health care system serving diverse Medicare Advantage (MA) beneficiaries, we examined where, when, and by whom Alzheimer's disease and related dementias (ADRD) diagnoses are recorded as well as downstream health care utilization and life care planning. Methods: Patients 65 years and older, continuously enrolled in the Kaiser Foundation health plan for at least 2 years, and with a first ADRD diagnosis between January 1, 2015, and December 31, 2018, comprised the incident cohort. Electronic health record data were used to identify site and source of the initial diagnosis (clinic vs hospital‐based, provider type), health care utilization in the year before and after diagnosis, and end‐of‐life care. Results: ADRD prevalence was 5.5%. A total of 25,278 individuals had an incident ADRD code (rate: 1.2%) over the study period—nearly half during a hospital‐based encounter. Hospital‐diagnosed patients had higher comorbidities, acute care use before and after diagnosis, and 1‐year mortality than clinic‐diagnosed individuals (36% vs 11%). Many decedents (58%‐72%) received palliative care or hospice. Of the 55% diagnosed as outpatients, nearly two‐thirds were diagnosed by dementia specialists; when used, standardized cognitive assessments indicated moderate stage ADRD. Despite increases in advance care planning and visits to dementia specialists in the year after diagnosis, acute care use also increased for both clinic‐ and hospital‐diagnosed cohorts. Discussion: Similar to other MA plans, ADRD is under‐diagnosed in this health system, compared to traditional Medicare, and diagnosed well beyond the early stages, when opportunities to improve overall outcomes are presumed to be better. Dementia specialists function primarily as consultants whose care does not appear to mitigate acute care use. Strategic targets for ADRD care improvement could focus on generating pragmatic evidence on the value of proactive detection and tracking, care planning, and the role of specialists in chronic care management.
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Older adults with MLTCiD were rarely referred to palliative care services early in their dementia journey due to a lack of awareness of the benefits for patients with dementia (CMOC10).
“For example, while palliative care can support quality of life and prevent unnecessary transitions, older adults with MLTCiD were rarely referred to these services early in their dementia journey due to a lack of awareness of the benefits for patients with dementia (CMOC10) [59, 64, 85, 86].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [86]
The Conclusion identifies an opportunity to integrate palliative care principles earlier in the dementia illness trajectory. It does not establish that early referrals were rare or attribute referral patterns to a lack of awareness of palliative care benefits. The Results report that 60% of patients who died within a year of diagnosis received hospice or home palliative care, but do not establish when referrals occurred. (LLM, conf=0.84)
Experimental — accuracy not yet measuredHealthcare professionals working outside of geriatric care were often unaware of dementia diagnoses.
“As a result, HCPs working outside of geriatric care were often unaware of dementia diagnoses (CMOC14) [50, 53, 59, 66, 79, 86, 89].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [86]
The Discussion says outpatient clinicians may not be aware of hospital-assigned dementia diagnoses because administrative codes are not entered on the patient’s problem list. It does not establish that professionals outside geriatric care were often unaware of diagnoses generally; its observation is tentative and limited to the hospital-diagnosed cohort. (LLM, conf=0.87)
Experimental — accuracy not yet measuredDiagnosis delays are greater among individuals from racial and ethnic minority groups.
“with greater delays among individuals from racial and ethnic minority groups.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [258]
The Conclusion reports delayed dementia diagnosis overall, but not greater delays among racial or ethnic minority groups. In the Discussion (page unavailable), the authors say they did not observe racial or ethnic differences in earlier cognitive-disorder codes in their cohort; they also report another study in which minority beneficiaries were less likely to receive an MCI diagnosis before dementia, a possible indicator of earlier detection. That reported finding offers limited support, but does not establish greater diagnostic delays in this study. (LLM, conf=0.84)
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- Authors
- Nguyen, H. Q., Borson, S., Khang, P., Langer‐Gould, A., Wang, S. E., Carrol, J., & Lee, J. S.
- Affiliations
- Kaiser Permanente (US)
- School of Medicine Department of Psychiatry and Behavioral Sciences University of Washington Seattle Washington USA
- Los Angeles Medical Center Department of Neurology Kaiser Permanente Southern California Pasadena California USA
- Corresponding author
- Nguyen, Huong Q.
- Venue
- Alzheimer's & Dementia: Translational Research & Clinical Interventions
- Publisher
- Wiley
- Published
- 2022-01
- Volume
- 8
- Issue
- 1
- Pages
- e12279-e12279
- ISSN
- 2352-8737 (ISSN-L)
- PMC
- PMC8918121
- OpenAlex
- W4220948945
- Cited by
- 29
- References
- 54
- Citations by year
- 2026: 7 · 2025: 6 · 2024: 7 · 2023: 8 · 2022: 1
- FWCI
- 3.58
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Alzheimer s & Dementia Translational Research & Clinical Interventions (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Funders
- Kaiser Permanente
- National Institute on Aging (U54AG065187)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia diagnosis, Alzheimer's disease and related dementias, Medicare Advantage, integrated care delivery, outpatient diagnosis, acute care utilization, end-of-life care, palliative care, hospice, advance care planning, life care planning, underdiagnosis, racial diversity, older adults
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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