Individual-Level Factors Associated With 10-Year Incidence of Alzheimer Disease and Related Dementias in the VA Million Veteran Program.

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Approximately 450,000 Veterans are living with Alzheimer disease and related dementias (ADRD), and the high prevalence of ADRD represents a major public health challenge for the Veterans Health Administration. While advancing age and genetic predisposition are well-established ADRD risk factors, growing evidence suggests that additional modifiable factors may also play an important role. This study leveraged data from the VA Million Veteran Program (MVP) to (1) estimate 10-year incidence of ADRD and (2) evaluate associations between a broad range of individual-level risk and resilience factors and incident ADRD in a large, nationally representative sample of Veterans. This retrospective cohort study included Veterans aged ≥65 years at MVP enrollment who completed the MVP Baseline Survey and had VA electronic health record (EHR) data available. Individual-level variables including sociodemographic factors, military-specific characteristics, military environmental exposures (MEEs), health conditions, and health behaviors were characterized using MVP Baseline Survey data and supplemented with EHR data as available. The primary outcome was ADRD, which was determined using a validated algorithm based on International Classification of Diseases diagnosis codes extracted from the EHR. Associations between each risk/resilience factor and incident ADRD were examined using separate Cox regression models adjusted for age, sex, and education. The sample included 245,949 Veterans (age: mean 73.16, SD 6.84 years; 2.59% female). Approximately 4.56% (n = 11,216) of the sample developed ADRD over 10 years. History of traumatic brain injury (TBI; hazard ratio [HR] 2.96, 95% CI 2.76-3.17), depression (HR 2.93, 95% CI 2.82-3.04), and alcohol use disorder (AUD; HR 2.35, 95% CI 2.19-2.53) were the health factors most strongly associated with ADRD. ADRD risk was also elevated among Veterans with a history of exposure to Agent Orange (HR 1.09, 95% CI 1.03-1.14), chemical/biological warfare agents (HR 1.31, 95% CI 1.23-1.39), and pyridostigmine bromide tablets (HR 1.67, 95% CI 1.44-1.93). Findings identified TBI, depression, AUD, and MEEs as key variables associated with ADRD in Veterans. These factors may represent important targets for prevention and intervention efforts aimed at improving the long-term health of aging Veterans. Additional work is needed to clarify the mechanisms through which these factors influence ADRD risk and to establish whether observed associations are causal.

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  • Cite Count Icon 9
  • 10.2196/57926
Extracting Critical Information from Unstructured Clinicians’ Notes Data to Identify Dementia Severity Using a Rule-Based Approach: Feasibility Study
  • Sep 24, 2024
  • JMIR Aging
  • Ravi Prakash + 3 more

BackgroundThe severity of Alzheimer disease and related dementias (ADRD) is rarely documented in structured data fields in electronic health records (EHRs). Although this information is important for clinical monitoring and decision-making, it is often undocumented or “hidden” in unstructured text fields and not readily available for clinicians to act upon.ObjectiveWe aimed to assess the feasibility and potential bias in using keywords and rule-based matching for obtaining information about the severity of ADRD from EHR data.MethodsWe used EHR data from a large academic health care system that included patients with a primary discharge diagnosis of ADRD based on ICD-9 (International Classification of Diseases, Ninth Revision) and ICD-10 (International Statistical Classification of Diseases, Tenth Revision) codes between 2014 and 2019. We first assessed the presence of ADRD severity information and then the severity of ADRD in the EHR. Clinicians’ notes were used to determine the severity of ADRD based on two criteria: (1) scores from the Mini Mental State Examination and Montreal Cognitive Assessment and (2) explicit terms for ADRD severity (eg, “mild dementia” and “advanced Alzheimer disease”). We compiled a list of common ADRD symptoms, cognitive test names, and disease severity terms, refining it iteratively based on previous literature and clinical expertise. Subsequently, we used rule-based matching in Python using standard open-source data analysis libraries to identify the context in which specific words or phrases were mentioned. We estimated the prevalence of documented ADRD severity and assessed the performance of our rule-based algorithm.ResultsWe included 9115 eligible patients with over 65,000 notes from the providers. Overall, 22.93% (2090/9115) of patients were documented with mild ADRD, 20.87% (1902/9115) were documented with moderate or severe ADRD, and 56.20% (5123/9115) did not have any documentation of the severity of their ADRD. For the task of determining the presence of any ADRD severity information, our algorithm achieved an accuracy of >95%, specificity of >95%, sensitivity of >90%, and an F1-score of >83%. For the specific task of identifying the actual severity of ADRD, the algorithm performed well with an accuracy of >91%, specificity of >80%, sensitivity of >88%, and F1-score of >92%. Comparing patients with mild ADRD to those with more advanced ADRD, the latter group tended to contain older, more likely female, and Black patients, and having received their diagnoses in primary care or in-hospital settings. Relative to patients with undocumented ADRD severity, those with documented ADRD severity had a similar distribution in terms of sex, race, and rural or urban residence.ConclusionsOur study demonstrates the feasibility of using a rule-based matching algorithm to identify ADRD severity from unstructured EHR report data. However, it is essential to acknowledge potential biases arising from differences in documentation practices across various health care systems.

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  • 10.1001/jamanetworkopen.2023.2109
Readmission Rates and Episode Costs for Alzheimer Disease and Related Dementias Across Hospitals in a Statewide Collaborative
  • Mar 16, 2023
  • JAMA network open
  • Neil Kamdar + 3 more

There has been a paucity of research examining the risk and cost of readmission among patients with Alzheimer disease and related dementias (ADRD) after a planned hospitalization for a broad set of medical and surgical procedures. To examine 30-day readmission rates and episode costs, including readmission costs, for patients with ADRD compared with their counterparts without ADRD across Michigan hospitals. This retrospective cohort study used 2012 to 2017 Michigan Value Collaborative data across different medical and surgical services stratified by ADRD diagnosis. A total of 66 676 admission episodes of care that occurred between January 1, 2012, and June 31, 2017, were identified for patients with ADRD using International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) and International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) diagnostic codes for ADRD, along with 656 235 admission episodes in patients without ADRD. Using a generalized linear model framework, this study risk adjusted, price standardized, and performed episode payment winsorization. Payments were risk adjusted for age, sex, Hierarchical Condition Categories, insurance type, and prior 6-month payments. Selection bias was accounted for using multivariable logistic regression with propensity score matching without replacement using calipers. Data analysis was performed from January to December 2019. Presence of ADRD. Main outcomes were 30-day readmission rate at the patient and county levels, 30-day readmission cost, and 30-day total episode cost across 28 medical and surgical services. The study included 722 911 hospitalization episodes, of which 66 676 were related to patients with ADRD (mean [SD] age, 83.4 [8.6] years; 42 439 [63.6%] female) and 656 235 were related to patients without ADRD (mean [SD] age, 66.0 [15.4] years; 351 246 [53.5%] female). After propensity score matching, 58 629 hospitalization episodes were included for each group. Readmission rates were 21.5% (95% CI, 21.2%-21.8%) for patients with ADRD and 14.7% (95% CI, 14.4%-15.0%) for patients without ADRD (difference, 6.75 percentage points; 95% CI, 6.31-7.19 percentage points). Cost of 30-day readmission was $467 higher (95% CI of difference, $289-$645) among patients with ADRD ($8378; 95% CI, $8263-$8494) than those without ($7912; 95% CI, $7776-$8047). Across all 28 service lines examined, total 30-day episode costs were $2794 higher for patients with ADRD vs patients without ADRD ($22 371 vs $19 578; 95% CI of difference, $2668-$2919). In this cohort study, patients with ADRD had higher readmission rates and overall readmission and episode costs than their counterparts without ADRD. Hospitals may need to be better equipped to care for patients with ADRD, especially in the postdischarge period. Considering that any type of hospitalization may put patients with ADRD at a high risk of 30-day readmission, judicious preoperative assessment, postoperative discharge, and care planning are strongly advised for this vulnerable patient population.

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  • 10.1016/j.jagp.2021.01.040
High Occurrence of Dementia in Older Adults Returning to Community From Prison
  • Mar 16, 2021
  • The American Journal of Geriatric Psychiatry
  • Randall Kuffel + 6 more

High Occurrence of Dementia in Older Adults Returning to Community From Prison

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  • Cite Count Icon 73
  • 10.1001/jamaneurol.2022.0010
Trends in Mortality Rates Among Medicare Enrollees With Alzheimer Disease and Related Dementias Before and During the Early Phase of the COVID-19 Pandemic
  • Feb 28, 2022
  • JAMA Neurology
  • Lauren Gilstrap + 4 more

The COVID-19 pandemic fundamentally altered the delivery of health care in the United States. The associations between these COVID-19-related changes and outcomes in vulnerable patients, such as among persons with Alzheimer disease and related dementias (ADRD), are not yet well understood. To determine the association between regional rates of COVID-19 infection and excess mortality among individuals with ADRD. This retrospective cross-sectional study used data from beneficiaries of 100% fee-for-service Medicare Parts A and B between January 1, 2019, and December 31, 2020, to assess age- and sex-adjusted mortality rates. Participants were 53 640 888 Medicare enrollees 65 years of age or older categorized into 4 prespecified cohorts: enrollees with or without ADRD and enrollees with or without ADRD residing in nursing homes. Monthly COVID-19 infection rates by hospital referral region between January and December 2020. Mortality rates from March through December 2020 were compared with those from March through December 2019. Excess mortality was calculated by comparing mortality rates in 2020 with rates in 2019 for specific, predetermined groups. Means were compared using t tests, and 95% CIs were estimated using the delta method. This cross-sectional study included 26 952 752 Medicare enrollees in 2019 and 26 688 136 enrollees in 2020. In 2019, the mean (SD) age of community-dwelling beneficiaries without ADRD was 74.1 (8.8) years and with ADRD was 82.6 (8.4) years. The mean (SD) age of nursing home residents with ADRD (83.6 [8.4] years) was similar to that for patients without ADRD (79.7 [8.8] years). Among patients diagnosed as having ADRD in 2019, 63.5% were women, 2.7% were Asian, 9.2% were Black, 5.7% were Hispanic, 80.7% were White, and 1.7% were identified as other (included all races or ethnicities other than those given); the composition did not change appreciably in 2020. Compared with 2019, adjusted mortality in 2020 was 12.4% (95% CI, 12.1%-12.6%) higher among enrollees without ADRD and 25.7% (95% CI, 25.3%-26.2%) higher among all enrollees with ADRD, with even higher percentages for Asian (36.0%; 95% CI, 32.6%-39.3%), Black (36.7%; 95% CI, 35.2%-38.2%), and Hispanic (40.1%; 95% CI, 37.9%-42.3%) populations with ADRD. The hospital referral region in the lowest quintile for COVID-19 infections in 2020 had no excess mortality among enrollees without ADRD but 8.8% (95% CI, 7.5%-10.2%) higher mortality among community-dwelling enrollees with ADRD and 14.2% (95% CI, 12.2%-16.2%) higher mortality among enrollees with ADRD living in nursing homes. The results of this cross-sectional study suggest that the COVID-19 pandemic may be associated with excess mortality among older adults with ADRD, especially for Asian, Black, and Hispanic populations and people living in nursing homes, even in areas with low COVID-19 prevalence.

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  • 10.1001/jamahealthforum.2023.3080
Medicare Advantage Enrollment and Disenrollment Among Persons With Alzheimer Disease and Related Dementias
  • Sep 15, 2023
  • JAMA Health Forum
  • Hannah O James + 2 more

Large enrollment growth has been observed in the Medicare Advantage program, but less is known about enrollment patterns among persons with Alzheimer disease and related dementias (ADRD). To evaluate patterns in Medicare Advantage enrollment and disenrollment among beneficiaries with or without ADRD. This cross-sectional study used 6 national data sources between January 1, 2011, and December 31, 2018. Analyses were performed between June 2021 and August 2022. The cohort comprised US Medicare beneficiaries with acute or postacute care utilization between 2013 and 2018. ADRD diagnosis from an acute or postacute care encounter Medicare data source. Enrollment in Medicare Advantage, disenrollment from Medicare Advantage to traditional Medicare, and contract exit (leaving a Medicare Advantage contract for traditional Medicare or a different Medicare Advantage contract). The 32 796 872 Medicare beneficiaries in the cohort had a mean (SD) age of 74.0 (12.5) years and included 18 228 513 females (55.6%). Enrollment in Medicare Advantage among beneficiaries with ADRD increased from 24.7% (95% CI, 24.7%-24.8%) in 2013 to 33.0% (95% CI, 32.9%-33.1%) in 2018, an absolute increase of 8.3 percentage points and a 33.4% relative increase after adjusting for demographic characteristics, comorbid conditions, and utilization and including county fixed effects. Among beneficiaries without ADRD, enrollment in Medicare Advantage increased by 8.2 percentage points from 27.6% (95% CI, 27.6%-27.6%) in 2013 to 35.8% (95% CI, 35.8%-35.8%) in 2018, a 29.7% relative increase over the study period. Beneficiaries with ADRD were 1.4 times as likely to disenroll from their Medicare Advantage contract to traditional Medicare (4.4% vs 3.2% in 2017-2018; P < .001) in adjusted analyses. Regardless of ADRD status, beneficiaries had similar rates of switching to a new Medicare Advantage contract. Differences in contract exit rates were associated with higher rates of disenrollment from Medicare Advantage to traditional Medicare among beneficiaries with ADRD vs those without ADRD (16.3% [95% CI, 16.2%-16.3%] vs 15.1% [95% CI, 15.1%-15.1%]). Beneficiaries with ADRD and dual eligibility for Medicaid enrollment had higher rates of contract exit than those without dual eligibility (19.7% [95% CI, 19.6%-19.7%] vs 14.9% [95% CI, 14.8%-14.9%]), and these differences were even greater than those among beneficiaries without ADRD and with and without dual-eligibility status, respectively (18.3% [95% CI, 18.2%-18.3%] vs 13.8% [95% CI, 13.7%-13.8%]). In this cross-sectional study of the Medicare population with acute and postacute care use, beneficiaries with ADRD had increasing enrollment in the Medicare Advantage program, proportional to the growth in overall enrollment, but their disenrollment from Medicare Advantage in the following year remained higher compared with beneficiaries without ADRD. The findings highlight the need to understand the factors associated with higher disenrollment rates and determine whether such rates reflect access or quality challenges for beneficiaries with ADRD.

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  • 10.1001/jamahealthforum.2021.5111
Association of Medicare Mandatory Bundled Payment Reform With Joint Replacement Surgery Use for Beneficiaries With Alzheimer Disease and Related Dementias
  • Feb 11, 2022
  • JAMA Health Forum
  • Caroline P Thirukumaran + 5 more

Medicare beneficiaries with Alzheimer disease and related dementias (ADRD) are a particularly vulnerable group in whom arthritis is a frequently occurring comorbidity. Medicare's mandatory bundled payment reform-the Comprehensive Care for Joint Replacement (CJR) model-was intended to improve quality and reduce spending in beneficiaries undergoing joint replacement surgical procedures for arthritis. In the absence of adjustment for clinical risk, hospitals may avoid performing elective joint replacements for beneficiaries with ADRD. To evaluate the association of the CJR model with utilization of joint replacements for Medicare beneficiaries with ADRD. This cohort study used national Medicare data from 2013 to 2017 and multivariable linear probability models and a triple differences estimation approach. Medicare beneficiaries with a diagnosis of arthritis were identified from 67 metropolitan statistical areas (MSAs) mandated to participate in CJR and 104 control MSAs. Data were analyzed from July 2020 to July 2021. Implementation of the CJR model in 2016. Outcomes were separate binary indicators for whether or not a beneficiary underwent hip or knee replacement. Key independent variables were the MSA group, before-CJR and after-CJR phase, ADRD diagnosis, and their interactions. The linear probability models controlled for beneficiary characteristics, MSA fixed effects, and time trends. The study included 24 598 729 beneficiary-year observations for 9 624 461 unique beneficiaries, of which 250 168 beneficiaries underwent hip and 474 751 underwent knee replacements. The mean (SD) age of the 2013 cohort was 77.1 (7.9) years, 3 110 922 (66.4%) were women, 3 928 432 (83.8%) were non-Hispanic White, 792 707 (16.9%) were dually eligible for Medicaid, and 885 432 (18.9%) had an ADRD diagnosis. Before CJR implementation, joint replacement rates were lower among beneficiaries with ADRD (hip replacements: 0.38% vs 1.17% for beneficiaries with and without ADRD, respectively; P < .001; knee replacements: 0.70% vs 2.25%; P < .001). After controlling for relevant covariates, CJR was associated with a 0.07-percentage-point decline in hip replacements for beneficiaries with ADRD (95% CI, -0.13 to -0.001; P = .046) and a 0.07-percentage-point decline for beneficiaries without ADRD (95% CI, -0.12 to -0.02; P = .01) residing in CJR MSAs compared with beneficiaries in control MSAs. However, this change in hip replacement rates for beneficiaries with ADRD was not statistically significantly different from the change for beneficiaries without ADRD (percentage point difference: 0.01; 95% CI, -0.08 to 0.09; P = .88). No statistically significant changes in knee replacement rates were noted for beneficiaries with ADRD compared with those without ADRD with CJR implementation (percentage point difference: -0.03, 95% CI, -0.09 to 0.02; P = .27). In this cohort study of Medicare beneficiaries with arthritis, the CJR model was not associated with a decline in joint replacement utilization among beneficiaries with ADRD compared with beneficiaries without ADRD in the first 2 years of the program, thereby alleviating patient selection concerns.

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  • Cite Count Icon 100
  • 10.1001/jamainternmed.2020.6432
Financial Presentation of Alzheimer Disease and Related Dementias
  • Nov 30, 2020
  • JAMA Internal Medicine
  • Lauren Hersch Nicholas + 3 more

Alzheimer disease and related dementias (ADRD), currently incurable neurodegenerative diseases, can threaten patients' financial status owing to memory deficits and changes in risk perception. Deteriorating financial capabilities are among the earliest signs of cognitive decline, but the frequency and extent of adverse financial events before and after diagnosis have not been characterized. To describe the financial presentation of ADRD using administrative credit data. This retrospective secondary data analysis of consumer credit report outcomes from 1999 to 2018 linked to Medicare claims data included 81 364 Medicare beneficiaries living in single-person households. Occurrence of adverse financial events in those with vs without ADRD diagnosis and time of adverse financial event from ADRD diagnosis. Missed payments on credit accounts (30 or more days late) and subprime credit scores. Overall, 54 062 (17 890 [33.1%] men; mean [SD] age, 74 [7.3] years) were never diagnosed with ADRD during the sample period and 27 302 had ADRD for at least 1 quarter of observation (8573 [31.4%] men; mean [SD] age, 79.4 [7.5] years). Single Medicare beneficiaries diagnosed with ADRD were more likely to miss payments on credit accounts as early as 6 years prior to diagnosis compared with demographically similar beneficiaries without ADRD (7.7% vs 7.3%; absolute difference, 0.4 percentage points [pp]; 95% CI, 0.07-0.70:) and to develop subprime credit scores 2.5 years prior to diagnosis (8.5% vs 8.1%; absolute difference, 0.38 pp; 95% CI, 0.04-0.72). By the quarter after diagnosis, patients with ADRD remained more likely to miss payments than similar beneficiaries who did not develop ADRD (7.9% vs 6.9%; absolute difference, 1.0 pp; 95% CI, 0.67-1.40) and more likely to have subprime credit scores than those without ADRD (8.2% vs 7.5%; absolute difference, 0.70 pp; 95% CI, 0.34-1.1). Adverse financial events were more common among patients with ADRD in lower-education census tracts. The patterns of adverse events associated with ADRD were unique compared with other medical conditions (eg, glaucoma, hip fracture). Alzheimer disease and related dementias were associated with adverse financial events years prior to clinical diagnosis that become more prevalent after diagnosis and were most common in lower-education census tracts.

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  • 10.1093/geroni/igaa057.190
Prevalence of Diagnosed Alzheimer’s Disease and Related Dementias in Medicare Advantage
  • Dec 16, 2020
  • Innovation in Aging
  • Eric Jutkowitz + 6 more

A third of Medicare beneficiaries are enrolled in Medicare Advantage (MA); however, little is known about MA beneficiaries diagnosed with Alzheimer’s disease and related dementias (AD/ADRD). MA plans have incentives that may influence the type of beneficiaries who enroll/disenroll from plans and the documentation of diagnoses. We calculated the prevalence of diagnosed AD/ADRD in 2014 and 2016 in three MA plans representing ~30% of the MA market. We identified beneficiaries ≥65 years of age enrolled in the MA plans in 2014 and 2016. Among eligible beneficiaries, we identified individuals with AD/ADRD using ICD-9 (2014) and ICD-10 (2016) codes included in the Medicare Chronic Conditions Warehouse algorithms for AD/ADRD. We determined the age and sex of beneficiaries diagnosed with AD/ADRD, and whether they disenrolled from the MA plan for any reason (e.g., death, enrollment in a different MA plan, enrollment in traditional Medicare or discontinuation of a plan) within 364 days from the date they were first identified has having AD/ADRD (i.e., index date). In 2014 and 2016 the prevalence of AD/ADRD diagnoses was 5.7% and 6.5%, respectively. In 2016, AD/ADRD beneficiaries were on average 82.4 (SD=7.3) years of age, 61.8% female, and had multiple comorbidities. By 364 days post-index, 32% of beneficiaries with diagnosed AD/ADRD had disenrolled from their plan. The characteristics of 2014 beneficiaries with diagnosed AD/ADRD were similar to their 2016 counterparts. In conclusion, MA beneficiaries with AD/ADRD are predominately female, have multimorbidity, and the age-stratified prevalence of AD/ADRD diagnoses is lower than rates reported in traditional Medicare.

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  • Cite Count Icon 15
  • 10.1001/jamanetworkopen.2024.27610
Case Definition for Diagnosed Alzheimer Disease and Related Dementias in Medicare
  • Sep 3, 2024
  • JAMA Network Open
  • Kan Z Gianattasio + 8 more

Lack of a US dementia surveillance system hinders efforts to support and address disparities among persons living with Alzheimer disease and related dementias (ADRD). To review diagnosis and prescription drug code ADRD identification algorithms to develop and implement case definitions for national surveillance. In this cross-sectional study, a systematic literature review was conducted to identify unique International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) and prescription drug codes used by researchers to identify ADRD in administrative records. Code frequency of use, characteristics of beneficiaries identified by codes, and expert and author consensus around code definitions informed code placement into categories indicating highly likely, likely, and possible ADRD. These definitions were applied cross-sectionally to 2017 to 2019 Medicare fee-for-service (FFS) claims and Medicare Advantage (MA) encounter data to classify January 2019 Medicare enrollees. Data analysis was conducted from September 2022 to March 2024. ICD-10-CM and national drug codes in FFS claims or MA encounters. The primary outcome was counts and rates of beneficiaries meeting each case definition. Category-specific age, sex, race and ethnicity, MA enrollment, dual-eligibility, long-term care utilization, mortality, and rural residence distributions, as well as frailty scores and FFS monthly expenditures were also analyzed. Beneficiary characteristics were compared across categories, and age-standardized to minimize confounding by age. Of the 60 000 869 beneficiaries included (50 853 806 aged 65 years or older [84.8%]; 32 567 891 female [54.3%]; 5 555 571 Hispanic [9.3%]; 6 318 194 non-Hispanic Black [10.5%]; 44 384 980 non-Hispanic White [74.0%]), there were 4 312 496 (7.2%) with highly likely ADRD, 1 124 080 (1.9%) with likely ADRD, and 2 572 176 (4.3%) with possible ADRD, totaling more than 8.0 million with diagnostic evidence of at least possible ADRD. These beneficiaries were older, more frail, more likely to be female, more likely to be dual-eligible, more likely to use long-term care, and more likely to die in 2019 compared with beneficiaries with no evidence of ADRD. These differences became larger when moving from the possible ADRD group to the highly likely ADRD group. Mean (SD) FFS monthly spending was $2966 ($4921) among beneficiaries with highly likely ADRD compared with $936 ($2952) for beneficiaries with no evidence of ADRD. Differences persisted after age standardization. This cross-sectional study of 2019 Medicare beneficiaries identified more than 5.4 million Medicare beneficiaries with evidence of at least likely ADRD in 2019 using the diagnostic case definition. Pending validation against clinical and other methods of ascertainment, this approach can be adopted provisionally for national surveillance.

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  • Cite Count Icon 1
  • 10.1111/jgs.19502
Assessing the Content of Goals of Care Documentation for Hospitalized Patients With Alzheimer's Disease and Related Dementias
  • May 2, 2025
  • Journal of the American Geriatrics Society
  • Gina Piscitello + 5 more

ABSTRACTBackgroundGoals of care (GOC) conversations are an evidence‐based practice that help clarify and align patient values and preferences for medical care with treatment options. Little is known about how clinicians document the content of GOC conversations for patients with Alzheimer's disease and related dementias (AD/ADRD) in the electronic health record (EHR) and whether this may differ across hospitals. We aimed to assess the content of GOC documentation for hospitalized patients with and without AD/ADRD.MethodsWe performed a retrospective cross‐sectional study to assess documented content within a standardized GOC note written for seriously ill hospitalized adult patients admitted to 21 hospitals between 2021 and 2023. Seriously ill patients had a predicted 90‐day mortality greater than 30% as determined by an artificial intelligence mortality prediction score. Patients with AD/ADRD were identified using diagnostic codes placed by clinicians in the EHR.ResultsOur review of GOC documentation across 21 hospitals identified 5475 patients with GOC notes. The study sample had a median age of 76 years and was 52% male, 13% nonwhite, 81% with Medicare insurance, and 14% with AD/ADRD. Compared to patients without AD/ADRD, patients with AD/ADRD were more likely to have documentation of family presence at the GOC conversation (93% vs. 76%, p = < 0.001), a surrogate decision‐maker (60% vs. 54%, p = 0.003), and patient prognosis (84% vs. 78%, p = < 0.001). Patients with AD/ADRD were less likely to have documentation of patient presence at the GOC conversation (28% vs. 64%, p = < 0.001) and patient values and preferences for medical care (65% vs. 69%, p = < 0.05).ConclusionsHospitalized patients with AD/ADRD are infrequently present in GOC conversations and less likely to have their values and preferences for medical care documented within a GOC note. Further research is needed to explore the reasons for these findings.

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  • Cite Count Icon 57
  • 10.1001/jamanetworkopen.2020.1809
Health Care Utilization, Care Satisfaction, and Health Status for Medicare Advantage and Traditional Medicare Beneficiaries With and Without Alzheimer Disease and Related Dementias
  • Mar 30, 2020
  • JAMA Network Open
  • Sungchul Park + 4 more

Compared with traditional Medicare (TM) fee-for-service plans, Medicare Advantage (MA) plans may provide more-efficient care for beneficiaries with Alzheimer disease and related dementias (ADRD) without compromising care quality. To determine differences in health care utilization, care satisfaction, and health status for MA and TM beneficiaries with and without ADRD. A cohort study was conducted of MA and TM beneficiaries with and without ADRD from all publicly available years of the Medicare Current Beneficiary Survey between 2010 and 2016. To address advantageous selection into MA plans, county-level MA enrollment rate was used as an instrument. Data were analyzed between July 2019 and December 2019. Enrollment in MA. Self-reported health care utilization, care satisfaction, and health status. The sample included 47 100 Medicare beneficiaries (25 900 women [54.9%]; mean [SD] age, 72.2 [11.4] years). Compared with TM beneficiaries with ADRD, MA beneficiaries with ADRD had lower utilization across the board, including a mean of -22.3 medical practitioner visits (95% CI, -24.9 to -19.8 medical practitioner visits), -2.3 outpatient hospital visits (95% CI, -3.6 to -1.1 outpatient hospital visits), -0.2 inpatient hospital admissions (95% CI, -0.3 to -0.1 inpatient hospital admissions), and -0.1 long-term care facility stays (95% CI, -0.2 to -0.1 long-term care facility stays). A similar trend was observed among beneficiaries without ADRD, but the difference was greater between MA and TM beneficiaries with ADRD than between MA and TM beneficiaries without ADRD (mean, -15.0 medical practitioner visits [95% CI, -18.7 to -11.3 medical practitioner visits], -1.7 outpatient hospital visits [95% CI, -3.0 to -0.3 outpatient hospital visits], and -0.1 inpatient hospital admissions [95% CI, -1.0 to 0.0 inpatient hospital admissions]). Overall, no or negligible differences were detected in care satisfaction and health status between MA and TM beneficiaries with and without ADRD. Compared with TM beneficiaries, MA beneficiaries had lower health care utilization without compromising care satisfaction and health status. This difference was more pronounced among beneficiaries with ADRD. These findings suggest that MA plans may be delivering health care more efficiently than TM, especially for beneficiaries with ADRD.

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  • Cite Count Icon 23
  • 10.1001/jamainternmed.2024.7719
Extreme Heat and Hospitalization Among Older Persons With Alzheimer Disease and Related Dementias
  • Feb 3, 2025
  • JAMA Internal Medicine
  • Scott W Delaney + 7 more

As US society ages and the climate changes, extreme outdoor heat may exacerbate the health burden of Alzheimer disease and related dementias (ADRD), but where, when, and among whom extreme heat may increase hospitalizations with ADRD remains understudied. To investigate the association between extreme heat and the risk of hospitalization with ADRD, and to explore how associations differ across climates and population subgroups. Population-based cohort study, using a time-stratified case-crossover design, of Medicare fee-for-service (Part A) claims from 2000 to 2018 among beneficiaries aged 65 years or older in the contiguous US; time-stratified case-crossover design implemented with distributed lag nonlinear models using conditional logistic regression. Data were analyzed from October to November 2024. Daily maximum heat index converted to percentiles of climate-specific warm season heat index distributions. The main outcome was each beneficiary's first hospitalization with an ADRD diagnosis code, and other measures were county-level climates (arid, continental, temperate, or tropical). The sample included 3 329 977 beneficiaries (2 126 290 [63.9%] female, 33 887 [1.0%] Asian, 354 771 [10.7%] Black, 61 515 [1.8%] Hispanic, 2 831 391 [85.0%] White, and 891 815 [26.8%] dual eligible for Medicaid). The odds ratio (OR) of hospitalization with ADRD comparing days in the 99th vs 50th percentile of the heat index distribution was 1.02 (95% CI, 1.01-1.02), corresponding to 0.8 (95% CI, 0.5-1.1) additional hospitalizations with ADRD per 1000 beneficiaries. Results suggest extreme heat associations persist for 3 days beyond the initial day. The cumulative OR of hospitalization with ADRD after 4 days of continuous exposure to heat indexes at the 99th vs 50th percentile was 1.04 (95% CI, 1.03-1.04), or 1.7 (95% CI, 1.3-2.0) additional hospitalizations with ADRD per 1000 beneficiaries. Extrapolating these estimates to the 6.7 million adults currently living with ADRD suggests that each day of extreme heat could contribute to at least 5360 added hospitalizations with ADRD nationwide. Effects estimates were similar in temperate and continental climates. Arid and tropical climate estimates were somewhat similar but more uncertain. OR point estimates for hospitalization from 4 days of continuous extreme heat exposure for beneficiaries identifying as Asian (OR, 1.09; 95% CI, 1.02-1.17), Black (OR, 1.07; 95% CI, 1.05-1.10), and Hispanic (OR, 1.08; 95% CI, 1.03-1.13), were 2.6 to 3.2 times larger than for White beneficiaries (OR, 1.03; 95% CI, 1.02-1.04). This study found that extreme heat may pose a growing threat to older adults living with ADRD. This threat may be larger among Asian, Black, and Hispanic racial and ethnic groups. Clinicians should consider counseling patients living with ADRD on extreme heat risks, and policymakers should devise risk mitigation programs.

  • Research Article
  • 10.1001/jamanetworkopen.2026.1796
Risk Adjustment for Alzheimer Disease and Related Dementias in Medicare Advantage and Health Care Experiences
  • Mar 2, 2026
  • JAMA Network Open
  • Wei Fu + 4 more

Failure to account for the full complexity and costs of high-need populations in the risk-adjusted capitated payment model for Medicare Advantage (MA) plans may create financial disincentives for plans to invest in comprehensive care for affected beneficiaries, potentially exacerbating health disparities. To evaluate the association of reinstatement of Alzheimer disease and related dementias (ADRD) hierarchical condition categories (HCCs) into the MA risk-adjusted payment model in 2020 with access, affordability, and quality of care for beneficiaries with ADRD. This cross-sectional study examined a nationally representative sample of MA beneficiaries from the Medicare Current Beneficiary Survey (2015-2022). Beneficiaries with ADRD and those without ADRD but with comparable neurological diseases (stroke, paralysis, or Parkinson disease) before and after 2020 were included. Data analyses were performed between January and December 2025. Reinstatement of the ADRD HCC into the MA risk adjustment formula in 2020. Primary outcomes were accessibility of needed care, medical financial burden, satisfaction with specialist access, and satisfaction with quality of care. These outcomes were assessed using a difference-in-differences model to compare changes between the treatment and control group before and after the inclusion of ADRD HCCs in the MA risk adjustment model in 2020. Among 5353 MA beneficiary observations (1239 [23.1%] aged 65-74 years; 3127 [58.4%] aged ≥75 years; 1785 male [33.3%]), 1629 (30.4%) reported a diagnosis of ADRD, and 3724 (69.6%) did not report an ADRD diagnosis. Compared with MA beneficiaries without ADRD, those with ADRD reported lower rates of difficulty accessing care (142 beneficiaries [8.7%] vs 394 beneficiaries [10.6%]) and medical financial burden (235 beneficiaries [19.3%] vs 740 beneficiaries [25.1%]), but slightly lower rates of satisfaction with specialist access (1384 beneficiaries [90.8%] vs 3267 [92.7%]) and care quality (1495 beneficiaries [92.8%] vs 3414 beneficiaries [93.0%]). Reintroducing ADRD HCCs into the MA risk-adjusted payment model was associated with a 6.62 percentage-point decrease in reporting any troubles accessing needed care (β = 0.06; 95% CI, -0.11 to -0.02; P = .005) and a 9.20 percentage-point decrease in reporting any medical financial burden (β = -0.09; 95% CI, -0.16 to -0.02; P = .009) among MA beneficiaries with ADRD. No significant association was observed for satisfaction with specialist access or with quality of care among MA beneficiaries with ADRD. In this cross-sectional study of MA beneficiaries, reintroducing ADRD HCCs into the MA risk adjustment model was associated with improved care access and reduced financial burden among MA beneficiaries with ADRD. These findings suggest that risk adjustment that better reflects the costs of chronic, complex conditions may better align MA plan incentives with the needs of high-need populations and promote care equity.

  • Abstract
  • 10.1002/alz70857_105513
Frequency of SCID‐5‐RV psychiatric symptoms in individuals with Alzheimer's disease and related dementias vs. older adults
  • Dec 1, 2025
  • Alzheimer's & Dementia
  • Megan S Barker + 8 more

BackgroundNeuropsychiatric symptoms (NPS) in Alzheimer's disease and related dementias (AD/ADRD) greatly increase mortality and caregiver burden. However, examinations of NPS have been limited by a lack of global, comprehensive assessments of psychiatric symptomatology in AD/ADRD. Comparing symptoms in AD/ADRD with older adults without dementia is of key importance for distinguishing pathological from normal aging. Here, we examine data collected using the Structured Clinical Interview for DSM‐5‐Research Version (SCID‐5‐RV), which is a gold‐standard measure of psychiatric symptoms, and compare frequencies in individuals with AD/ADRD to a control group of older adults without dementia.MethodThe study sample comprised 237 participants, including 49 older adults without dementia (M age = 63.2±13.1), and 188 individuals with AD/ADRD (M age=69.9±10.1; 78 Alzheimer's disease dementia, 110 other dementia). Item‐level data on the SCID‐5‐RV was collected, including all symptom questions (skip rules were not used). Prevalence of symptom endorsement was compared between the AD/ADRD and control groups, using Pearson's Chi‐squared test or Fisher's exact test.ResultCompared to older adults without dementia, the AD/ADRD group endorsed more frequent sleep problems, including fatigue, excessive sleepiness, daytime napping, prolonged nonrestorative sleep, and difficulty waking (all p < .05). Depression‐related symptoms were among the most endorsed within both groups, but the ADRD group had more frequent depressed mood, anhedonia, avolition, feelings of guilt (all p < .05). Notably, suicidality was present in 10% of the AD/ADRD group and 0% of controls (p < .05). While the AD/ADRD group reported more anxiety in terms of worry, irritability, restlessness, and muscle tension, controls exhibited more panic and phobia symptoms (all p < .05). The AD/ADRD group also reported more psychomotor agitation and verbal aggression (p < .05), and, unsurprisingly, more difficulties thinking and concentrating (p < .05). Overall, this points to psychiatric phenotypes in AD/ADRDConclusionThe results highlight important differences between reported psychiatric symptoms in those with AD/ADRD compared to unimpaired older adults. These findings can be used to develop measures that capture relevant neuropsychiatric constructs for use in neurodegenerative populations, and suggest specific symptoms that comprise psychiatric phenotypes that might point to pathological vs. normal aging.

  • Research Article
  • Cite Count Icon 2
  • 10.1097/qad.0000000000004137
Clinical and sociodemographic characteristics of Alzheimer's disease and related dementias among people with HIV.
  • Jan 30, 2025
  • AIDS (London, England)
  • Monique J Brown + 7 more

Alzheimer's disease and related dementias (AD/ADRD) continue to be a public health challenge. People with HIV (PWH) are at risk for neurocognitive disorders and may be at risk for AD/ADRD. However, studies examining clinical and sociodemographic factors associated with AD/ADRD among PWH are lacking. Therefore, the aim of this cross-sectional study was to determine the association between selected sociodemographic (age, gender, race, and rurality) and clinical (depression and encephalopathy) factors with AD/ADRD among PWH. Data were obtained from the South Carolina Revenue and Fiscal Affairs (RFA) Office and the South Carolina Alzheimer's Disease Registry ( N = 13 390). Multivariable logistic regression models were used to determine the association between age, gender, race, rurality, depression, and encephalopathy, and AD/ADRD among PWH. Among the study population ( N = 13 390), 5% ( n = 601) were found to have AD/ADRD. There was a dose-response relationship between age group and AD/ADRD whereas the age group increased, the association increased. For example, those who were aged 80 years and older were 80 times more likely to have AD/ADRD compared to those aged 18-29 years [adjusted odds ratio (aOR): 80.4; 95% confidence interval (CI): 40.2-160.8]. Additionally, male sex (aOR: 1.3; 95% CI: 1.9-1.6) and encephalopathy (aOR: 2.4; 95% CI: 1.9-3.2) were positively associated with AD/ADRD for PWH. AD/ADRD interventions may be warranted among PWH, especially among older adults, men, and those with encephalopathy. Future studies should examine potential pathways between clinical and sociodemographic characteristics and AD/ADRD among PWH.

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