Related Dementias Research Articles

Referral Sources Across Racial and Ethnic Groups at Alzheimer's Disease Research Centers.

Despite the need to increase engagement of underrepresented groups (URG) in Alzheimer's disease and related dementias (ADRD) studies, enrollment remains low. Compare referral sources across racial and ethnic groups among participants enrolled in ADRC studies. Data for this cross-sectional secondary analysis were extracted from the National Alzheimer's Coordinating Center Uniform Data Set. We performed mixed effects logistic regression models using generalized estimating equations for professional referral versus non-professional referral by racial and ethnic group, adjusted for age, gender, education, visit year, and Clinical Dementia Rating scale (CDR) with a random effect for study site. Included in the analysis were 48,330 participants across 46 ADRCs (mean [SD] age, 71.3 [10.5] years; 20,767 female [57%]; 4,138 Hispanic [8.6%]; 1,392 non-Hispanic Asian [2.9%]; 6,766 non-Hispanic Black [14%] individuals; and 676 individuals [1.4%] of other races. Non-Hispanic Black and Asian participants had lower odds of being referred by a professional contact compared to non-Hispanic White participants (Black: adjusted OR = 0.61, 95% CI = 0.44-0.86, p = 0.005; Asian: adjusted OR = 0.65, 95% CI, p = 0.004). In participants who had completed an MRI, there was no significant difference in referral source across ethnic and racial groups. Further studies are needed to better understand the systemic and structural factors that contribute to differences in referral sources and disparities in recruitment of URG into ADRD studies.

Annual Wellness Visits and Early Dementia Diagnosis Among Medicare Beneficiaries

Early recognition of cognitive impairment is key to optimal dementia care. No previous research has examined the probability of developing mild cognitive impairment (MCI) or Alzheimer disease and related dementias (ADRD) at 5-year follow-up among older adult Medicare beneficiaries by receipt of an annual wellness visit (AWV). To assess the association of incident AWV with the first ADRD or MCI diagnosis among older adults with Medicare fee-for-service benefits. This retrospective population-based cohort study used 100% Texas fee-for-service Medicare data from 2015 to 2022. Participants comprised 549 516 community-dwelling Medicare beneficiaries aged 68 years or older in 2018, with complete Medicare fee-for-service Parts A and B and no Medicare Advantage plan enrollment for 2015 to 2018. Medicare AWVs. The first MCI or ADRD diagnosis (reported as MCI or ADRD diagnosis, MCI diagnosis, and ADRD diagnosis) from the AWV index date in 2018 through December 31, 2022. In this cohort study of 549 516 Medicare beneficiaries with no diagnosis of MCI or ADRD in 2015 to 2017 (mean [SD] age, 76.7 [6.6] years; 289 932 women [52.8%]), 66 433 (12.1%) had an incident AWV in 2018. Annual wellness visit recipients were more likely than those who did not receive an AWV to be female, to be non-Hispanic White (followed by Hispanic, non-Hispanic Black, and other), to have more education, to reside in a metropolitan area, to have more comorbidities, and to have a primary care professional in the 12 months before the AWV index date. After propensity score matching, AWV receipt was associated with a 21% increase in MCI diagnosis (hazard ratio, 1.21 [95% CI, 1.16-1.27]) and a 4% increase in ADRD diagnosis (hazard ratio, 1.04 [95% CI, 1.02-1.06]). The increase in MCI diagnosis associated with AWV was larger when the AWV was censored or treated as a time-dependent covariate in the follow-up period. These findings indicate that AWV recipients had a timelier first MCI diagnosis than those who did not receive an AWV, but first ADRD diagnosis differed little. This study suggests that the Medicare AWV health policy may increase MCI identification, prompting more specialized care.

GWAS of multiple neuropathology endophenotypes identifies new risk loci and provides insights into the genetic risk of dementia.

Genome-wide association studies (GWAS) have identified >80 Alzheimer's disease and related dementias (ADRD)-associated genetic loci. However, the clinical outcomes used in most previous studies belie the complex nature of underlying neuropathologies. Here we performed GWAS on 11 ADRD-related neuropathology endophenotypes with participants drawn from the following three sources: the National Alzheimer's Coordinating Center, the Religious Orders Study and Rush Memory and Aging Project, and the Adult Changes in Thought study (n = 7,804 total autopsied participants). We identified eight independent significantly associated loci, of which four were new (COL4A1, PIK3R5, LZTS1 and APOC2). Separately testing known ADRD loci, 19 loci were significantly associated with at least one neuropathology after false-discovery rate adjustment. Genetic colocalization analyses identified pleiotropic effects and quantitative trait loci. Methylation in the cerebral cortex at two sites near APOC2 was associated with cerebral amyloid angiopathy. Studies that include neuropathology endophenotypes are an important step in understanding the mechanisms underlying genetic ADRD risk.

Untangling the complex web of avoidable nursing home-to-hospital transfers of residents with dementia.

Nursing home (NH) residents with Alzheimer's disease or related dementias (ADRD) are at high risk for hospital transfer. We aimed to (1) describe characteristics and predictors of avoidable transfer of residents with ADRD and (2) explore how "what matters" influences the decision to transfer. We applied an exploratory, mixed methods design using data collected as part of a Centers for Medicare and Medicaid Services demonstration project. Advanced practice registered nurses documented retrospective details about nursing home (NH)-to-hospital transfers (n=3687) from 16 NHs. NH residents with ADRD had 1.22 times higher odds of having an avoidable NH-to-hospital transfer (odds ratio=1.22; 95% confidence interval=1.03, 1.45). Factors contributing to avoidable transfers were age, stage of ADRD, what matters to the resident and their family, changes in condition, and resources available in the NH. These findings highlight the need for enhanced specificity in the discussion and documentation of resident and family preferences and continued investments in the NH workforce. This article reports on factors contributing to avoidable nursing home (NH)-to-hospital transfer of residents with Alzheimer's disease and related dementias (ADRD). The mixed methods design used in this study offers insight beyond what is possible using a single-method design. Using data collected from a Centers for Medicare and Medicaid Services demonstration project, advanced practice registered nurses documented retrospective details about NH-to-hospital transfers (n=3687) of residents. NH residents with ADRD were more likely to have an avoidable NH-to-hospital transfer. Factors contributing to avoidable transfers were age, stage of ADRD, what matters to the resident and their family, changes in condition, and resources available in the NH. These findings highlight the need for enhanced specificity in discussion and documentation of resident and family preferences and continued investments in the NH workforce.

Association between risk of Alzheimer’s disease and related dementias and angiotensin receptor Ⅱ blockers treatment for individuals with hypertension in high-volume claims data

Findings regarding the protective effect of Angiotensin II receptor blockers (ARBs) against Alzheimer's disease and related dementias (AD/ADRD) and cognitive decline have been inconclusive. Individuals with hypertension who do not have any prior ADRD diagnosis were included in this retrospective cohort study from Optum's de-identified Clinformatics® Data Mart. We identified antihypertensive medication (AHM) drug classes and subclassified ARBs by blood-brain barrier (BBB) permeability. We compared baseline characteristics and used the Kaplan-Meier (KM) survival curve and adjusted Cox proportional hazards (PH) model for survival analyses. From 6,390,826 individuals with hypertension, there were 1,839,176 ARB users, 3,366,841 non-ARB AHM users, and 1,184,809 AHM non-users. The unadjusted KM curve showed that ARB users had lower cumulative hazard than other AHM users or AHM non-users (P<0.0001). In Cox PH analysis, ARB users showed a 20% lower adjusted hazard of developing ADRD compared to angiotensin-converting enzyme inhibitor (ACEI) users and a 29% and 18% reduced hazard when compared to non-ARB/ACEI AHM users and AHM non-users (all P<0.0001). Consumption of BBB-crossing ARBs was linked to a lower hazard of ADRD development than non-BBB-crossing ARBs, undetermined ARBs, and non-consumption of AHMs by 11%, 25%, and 31% (all P<0.0001). This study suggests that ARBs are superior to ACEIs, non-ARB/ACEI AHMs, or non-use of AHMs in reducing the hazard of ADRD among patients with hypertension. Also, BBB-permeability in ARBs was associated with lower ADRD incidence. There is no cure for AD, ADRD, or vascular dementia; hence, these findings are significant in preventing those disorders in an inexpensive, convenient, and safe way. Limitations in claims data should be considered when interpreting our findings. This research was supported by the National Institute on Aging grants (R01AG084236, R01AG083039, RF1AG072799, R56AG074604).

The COM-B model: a cross-sectional survey assessing capability, opportunities, and motivation to follow the MIND diet among informal female caregivers of people with Alzheimer's disease and related dementias.

Caring for a person with Alzheimer's disease or dementia has been correlated with poor dietary patterns in caregivers. Dietary patterns like The Mediterranean-DASH diet intervention for neurodegenerative delay (MIND) diet have the potential to reduce the negative health outcomes associated with caregiving. Our objective was to assess capabilities, opportunities, and motivation of caregivers to follow the MIND diet using the COM-B model approach. Female caregivers (n = 299, m age = 37.7 ± 13.7) participated in an online survey. Majority were White (72%) and cared for someone with Alzheimer's disease (42.6%). The survey included at least one question for each of the 6 COM-B subcomponents: psychological capability, physical capability, social opportunity, physical opportunity, reflective motivation, and automatic motivation. Most caregivers were not consuming the MIND diet as only 8.4% reported normally eating the MIND diet items. Caregivers (36.5%) were slightly confident or not confident at all in cooking and eating the MIND diet. Participants (67.1%) reported that consuming the MIND diet would somewhat to very much be supported by friends and family. Budget, time, and transportation were selected as the main barriers. Budget, cooking skills, access to food and stores, and family support were the main facilitators. Strategies to increase capability, opportunities, and motivation for the MIND diet are needed to improve caregivers' health. Future MIND diet interventions should improve budget planning and cooking skills of caregivers (capabilities), make MIND diet food items accessible to them (opportunity) and incorporate social support from family and friends (motivation).

Complex regulation of tau phosphorylation by the endothelin system in brain microvascular endothelial cells (BMVECs): link to barrier function.

Endothelin-1 (ET-1), the most potent vasoconstrictor identified to date, contributes to cerebrovascular dysfunction. ET-1 levels in postmortem brain specimens from individuals diagnosed with Alzheimer's disease (AD) and related dementias (ADRD) were shown to be related to cerebral hypoxia and disease severity. ET-1-mediated vascular dysfunction and ensuing cognitive deficits have also been reported in experimental models of AD and ADRD. Moreover, studies also showed that ET-1 secreted from brain microvascular endothelial cells (BMVECs) can affect neurovascular unit integrity in an autocrine and paracrine manner. Vascular contributions to cognitive impairment and dementia (VCID) is a leading ADRD cause known to be free of neuronal tau pathology, a hallmark of AD. However, a recent study reported cytotoxic hyperphosphorylated tau (p-tau) accumulation, which fails to bind or stabilize microtubules in BMVECs in VCID. Thus, the study aimed to determine the impact of ET-1 on tau pathology, microtubule organization, and barrier function in BMVECs. Cells were stimulated with 1 μM ET-1 for 24 h in the presence/absence of ETA (BQ123; 20 μM) or ETB (BQ788; 20 μM) receptor antagonists. Cell lysates were assayed for an array of phosphorylation site-specific antibodies and microtubule organization/stabilization markers. ET-1 stimulation increased p-tau Thr231 but decreased p-tau Ser199, Ser262, Ser396, and Ser214 levels only in the presence of ETA or ETB antagonism. ET-1 also impaired barrier function in the presence of ETA antagonism. These novel findings suggest that (1) dysregulation of endothelial tau phosphorylation may contribute to cerebral microvascular dysfunction and (2) the ET system may be an early intervention target to prevent hyperphosphorylated tau-mediated disruption of BMVEC barrier function.

Regional variation in diagnostic intensity of dementia among older U.S. adults: An observational study.

Geographic variation in diagnosed cases of Alzheimer's disease and related dementias (ADRD) could be due to underlying population risk or differences in intensity of new case identification. Areas with low ADRD diagnostic intensity could be targeted for additional surveillance efforts. Medicare claims were used for a cohort of older adults across hospital referral regions (HRRs). ADRD-specific regional diagnosis intensity was measured as the ratio of expected new ADRD cases (estimated using population demographics, risk factors, and practice intensity) compared to observed ADRD-diagnosed cases. Crude new ADRD diagnosis rate ranged from 1.7 to 5.4 per 100 across HRRs. ADRD-specific diagnosis intensity ranged from 0.69 to 1.47 and varied most for Black, Hispanic, and the youngest (66-74) subgroups. Across all subgroups, ADRD diagnosis intensity was associated with 2-fold difference in receiving an ADRD diagnosis. Where one resides influences the likelihood of receiving an ADRD diagnosis, particularly among those 66-74 years of age and minoritized groups. Rate of new Alzheimer's disease and related dementias (ADRD) case identification varies geographically across the United States. Variation in case identification is greatest in Black, Hispanic, and young-old groups. Intensity of diagnosis (ie, case identification) unrelated to population risk differs across place. Likelihood of receiving an ADRD diagnosis varies 2-fold based on place of residence.

Healthcare expenditures among older immigrants in the US with Alzheimer's disease and related dementias: Population-based study between 2007 and 2020.

Using nationally representative datasets, this study examined differences in healthcare expenditures between US-born and foreign-born individuals aged 65 and above by the presence of Alzheimer's disease and related dementias (ADRD) and cognitive limitations (CL). This study further examined whether healthcare expenditures among foreign-born individuals vary by their duration of residence in the US. The study used the 2007-2020 Medical Expenditure Panel Survey (MEPS) and employed generalized linear regression models to estimate differences in healthcare expenditures between US-born and foreign-born older adults with ADRD, CL, and without ADRD or CL. Survey weights were applied to all estimates. Our study identified significant differences in healthcare expenditures among older adults by the presence of ADRD/CL and immigrant status. Having ADRD/CL had a more pronounced impact on high healthcare expenditures among foreign-born older adults than US-born adults with ADRD/CL, thereby diminishing the difference in healthcare expenditures by US nativity status for the older adults with ADRD or CL. In the analysis further distinguishing immigrants by their duration of residence, lower healthcare expenditures were primarily observed among foreign-born individuals with ADRD or CL who had lived in the US for less than ten years. Our results suggest potential shifts in costs resulting from delayed access to, and diagnosis or treatment of ADRD at a younger age, leading to increased healthcare needs and expenses among US foreign-born older adults.

Subsyndromes and symptom clusters: Multilevel factor analysis of behavioral and psychological symptoms of dementia with intensive longitudinal data.

Behavioral and psychological symptoms in dementia (BPSD) are dynamic phenomena with a high amount of intraindividual variability. We applied a multilevel framework to identify subsyndromes (between-person factors) that represent clinically relevant profiles of BPSD and identify symptom clusters (within-person factors) that represent contextually driven daily symptom experiences. This study used an intensive longitudinal design in which 68 co-residing family caregivers to persons living with dementia were recruited to proxy report on their care recipient's daily symptom experiences of 23 different BPSD for eight consecutive days (n=443 diaries). A multilevel exploratory/confirmatory factor analysis was used to account for nested data and separate within-person variances from between-level factor estimates. Exploratory factor analysis identified a 4-between 3-within factor structure based on fit statistics and clinical interpretability. This study offers major methodological and conceptual advancements for management of BPSD within Alzheimer's disease and related dementias by introducing two related but distinct concepts of subsyndromes and symptom clusters. Because behavioral and psychological symptoms of dementia (BPSD) are dynamic temporal phenomenon, this introduces measurement error into aggregate group-level estimates when trying to create subsyndromes. We propose a multilevel analysis to provide a more valid and reliable estimation by separating out variance due to within-person daily fluctuations. Using a multilevel exploratory factor analysis with intensive longitudinal data, we identified distinct and meaningful groups of BPSD. The four factors at the between-person level represented subsyndromes that are based on how BPSD co-occurred among persons with Alzheimer's disease (AD). These subsyndromes are clinically relevant because they share features of established clinical phenomena and may have similar neurobiological etiologies. We also found three within-person factors representing distinct symptom clusters. They are based on how BPSD clustered together on a given day for an individual with AD and related dementias. These clusters may have shared environmental triggers.

Parallel electrophysiological abnormalities due to COVID-19 infection and to Alzheimer's disease and related dementia.

Many coronavirus disease 2019 (COVID-19) positive individuals exhibit abnormal electroencephalographic (EEG) activity reflecting "brain fog" and mild cognitive impairments even months after the acute phase of infection. Resting-state EEG abnormalities include EEG slowing (reduced alpha rhythm; increased slow waves) and epileptiform activity. An expert panel conducted a systematic review to present compelling evidence that cognitive deficits due to COVID-19 and to Alzheimer's disease and related dementia (ADRD) are driven by overlapping pathologies and neurophysiological abnormalities. EEG abnormalities seen in COVID-19 patients resemble those observed in early stages of neurodegenerative diseases, particularly ADRD. It is proposed that similar EEG abnormalities in Long COVID and ADRD are due to parallel neuroinflammation, astrocyte reactivity, hypoxia, and neurovascular injury. These neurophysiological abnormalities underpinning cognitive decline in COVID-19 can be detected by routine EEG exams. Future research will explore the value of EEG monitoring of COVID-19 patients for predicting long-term outcomes and monitoring efficacy of therapeutic interventions. HIGHLIGHTS: Abnormal intrinsic electrophysiological brain activity, such as slowing of EEG, reduced alpha wave, and epileptiform are characteristic findings in COVID-19 patients. EEG abnormalities have the potential as neural biomarkers to identify neurological complications at the early stage of the disease, to assist clinical assessment, and to assess cognitive decline risk in Long COVID patients. Similar slowing of intrinsic brain activity to that of COVID-19 patients is typically seen in patients with mild cognitive impairments, ADRD. Evidence presented supports the idea that cognitive deficits in Long COVID and ADRD are driven by overlapping neurophysiological abnormalities resulting, at least in part, from neuroinflammatory mechanisms and astrocyte reactivity. Identifying common biological mechanisms in Long COVID-19 and ADRD can highlight critical pathologies underlying brain disorders and cognitive decline. It elucidates research questions regarding cognitive EEG and mild cognitive impairment in Long COVID that have not yet been adequately investigated.

The Alzheimer's Disease Neuroimaging Initiative Neuropathology Core: An update.

Biomarkers for Alzheimer's disease neuropathologic change (ADNC) have been instrumental in developing effective disease-modifying therapeutics. However, to prevent/treat dementia effectively, we require biomarkers for non-AD neuropathologies; for this, neuropathologic examinations and annotated tissue samples are essential. We conducted clinicopathologic correlation for the first 100 Alzheimer's Disease Neuroimaging Initiative (ADNI) Neuropathology Core (NPC) cases. Clinical syndromes in this cohort showed 95% sensitivity and 79% specificity for predicting high/intermediate ADNC, a 21% false positive rate, and a ∼44% false negative rate. In addition, 60% with high/intermediate ADNC harbored additional potentially dementing co-pathologies. These results suggest that clinical presentation imperfectly predicts ADNC and that accurate prediction of high/intermediate ADNC does not exclude co-pathology that may modify presentation, biomarkers, and therapeutic responses. Therefore, new biomarkers are needed for non-AD neuropathologies. The ADNI NPC supports this mission with well-characterized tissue samples (available through ADNI and the National Institute on Aging) and "gold-standard" diagnostic information (soon to include digital histology). The Alzheimer's Disease Neuroimaging Initiative (ADNI) Neuropathology Core (NPC) brain donation cohort now exceeds 200 cases. ADNI NPC data in National Alzheimer's Coordinating Center format are available through the Laboratory of Neuro Imaging. Digitized slide files from the ADNI NPC will be available in 2025. Requests for ADNI brain tissue samples can be submitted online for ADNI/National Institute on Aging evaluation. Clinical diagnoses of Alzheimer's disease (AD)/AD and related dementias (ADRD) do not always predict post mortem neuropathology. Neuropathology is essential for the development of novel AD/ADRD biomarkers.

Prospective associations of interleukin-6 and APOE allele with cognitive decline in biracial community-dwelling older adults: The Chicago Health and Aging Project (CHAP).

It is unclear whether inflammation, that is, high interleukin-6 (IL-6) levels, and genetic risk, that is, apolipoprotein E (APOE) ε4 allele, have a compounding effect on cognitive decline (CD). We analyzed a subset of participants from the longitudinal cohort study, Chicago Health and Aging Project, comprising 1120 biracial community-dwelling older adults (60% Black and 62% women), and mean follow-up=6.4 years. We ran adjusted mixed-effects models on2 longitudinal CD. In APOE ε4 carriers, higher serum IL-6 was not associated with the rate of CD (β=-0.0091 [standard deviation (SD)=0.0165, p=0.5800]). Conversely, in non-ε4 carriers, compared to the lower tertile, those with the upper tertile of serum IL-6 levels experienced significantly accelerated CD (β=-0.0257 [SD=0.0084, p=0.0023]). Even without the largest genetic risk factor for late-onset Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD), elevated serum IL-6 still accelerate the rate of CD in non-APOE ε4 carriers. Hence, interventions ameliorating inflammation may prevent AD/ADRD. Interleukin-6 (IL-6) and the apolipoprotein E (APOE) ε4 allele have been separately associated with an increased risk for cognitive decline, but their interaction remains unclear.In ε4 carriers, IL-6 was not associated with cognitive decline. However, even without the biggest genetic risk factor for Alzheimer's disease (AD), that is, APOE ε4, elevated serum IL-6 still could confer accelerated rate of cognitive decline, with a detrimental effect half of that imposed by APOE ε4 alone.We found no racial differences in these associations.These findings contribute complementary evidence on non-APOE ε4-dependent and non-AD biological pathways through which cognitive decline can still be accelerated in non-APOE ε4 carriers and highlight a specific subgroup of older adults who are at a higher risk of AD and thus may benefit from anti-inflammatory interventions.

Health and Well-being of Family ('Ohana) Caregivers of Native Hawaiian and Pacific Islander Adults Living with Alzheimer's Disease and Related Dementias.

We aimed to describe the health and well-being of family caregivers of Native Hawaiian and Pacific Islander (NHPI) adults living with Alzheimer's disease and related dementias (ADRD), explore cultural values related to caregiving, and characterize barriers and facilitators to their health and well-being. Caregivers of NHPIs living with ADRD were recruited from across the United States to complete a multimethod study including a survey followed by an interview about their health and well-being. Eleven participants completed surveys, six of whom completed an interview. Themes included caring as a community, lōkahi (balance), and the importance of sleep, food, and physical activity. Cultural values included connection to cultural practices, kūpuna (elders) as cultural knowledge holders, and the kuleana (responsibility) of caregiving. Caregiving for an NHPI adult living with ADRD occurs beyond the dyad, and is a matter of family and community. Culturally-based interventions offered through community and healthcare organizations may be critical to promoting caregiver health.

Risk of Dementia Diagnosis After Injurious Falls in Older Adults

Emerging evidence suggests that mild cognitive impairment, which is a precursor to Alzheimer disease and related dementias (ADRD), places older adults at increased risk for falls. However, the risk that an older adult develops dementia after experiencing a fall is unknown. To determine the risk of new ADRD diagnosis after a fall in older adults. This retrospective cohort study examined Medicare Fee-for-Service data from 2014 to 2015, with follow-up data available for at least 1 year after the index encounter. Participants included adults aged 66 years and older who experienced a traumatic injury that resulted in an emergency department (ED) or inpatient encounter and did not have a preexisting diagnosis of dementia. Data analysis was performed from August 2023 to July 2024. Experiencing a fall compared with other mechanisms of injury, defined by International Classification of Diseases, Ninth Revision (ICD-9) and ICD-10 external cause of injury codes. The hazard of new ADRD diagnosis within 1 year of a fall, assessed by performing a Cox multivariable competing risk model that controlled for potential confounders while accounting for the competing risk of death. The study included 2 453 655 older adult patients who experienced a traumatic injury; 1 522 656 (62.1%) were female; 124 396 (5.1%) were Black and 2 232 102 (91.0%) were White; and the mean (SD) age was 78.1 (8.1) years. The mechanism of injury was a fall in 1 228 847 incidents (50.1%). ADRD was more frequently diagnosed within 1 year of a fall compared with other injury mechanisms (10.6% [129 910 of 1 228 847] vs 6.1% [74 799 of 1 224 808]; P < .001). The unadjusted hazard ratio (HR) of incident dementia diagnosis after a fall was 1.63 (95% CI, 1.61-1.64; P < .001). On multivariable Cox competing risk analysis, falling was independently associated with an increased risk of dementia diagnosis among older adults (HR, 1.21 [95% CI, 1.20-1.21]; P < .001) after controlling for patient demographics, medical comorbidities, and injury characteristics, while accounting for the competing risk of death. Among the subset of older adults without a recent skilled nursing facility admission, the HR was 1.27 (95% CI, 1.26-1.28; P < .001). In this cohort study, new ADRD diagnoses were more common after falls compared with other mechanisms of injury, with 10.6% of older adults being diagnosed with ADRD in the first year after a fall. To improve the early identification of ADRD, this study's findings suggest support for the implementation of cognitive screening in older adults who experience an injurious fall that results in an ED visit or hospital admission.

Detecting Agitated Behaviors in Nursing Home Residents With Dementia Using Electronic Medical Records

ObjectivesAgitated behaviors (behaviors) are common in nursing home (NH) residents with Alzheimer's disease and related dementias (ADRD). Pragmatic trials of behavior management interventions rely on routinely collected Minimum Data Set (MDS) data to evaluate study outcomes, despite known underreporting. We describe a method to augment MDS-based behavioral measures with structured and unstructured data from NH electronic medical records (EMR). DesignRepeated cross-sectional analyses of EMR data from a single multistate NH corporation. Setting and ParticipantsLong-stay residents (at least 90 days in NH) with ADRD from January 2020 through August 2022. MethodsQuarterly and annual assessments of NH residents with ADRD during the study period were identified. For MDS, any behavior was defined as a score of 1 or higher on the Agitated and Reactive Behavior Scale. For structured EMR data, any behavior was defined as increased resident agitation, verbal aggression, or physical aggression on the Interventions to Reduce Acute Care Transfers, Change in Condition form (INTERACT). For unstructured EMR data, any behavior was defined using keyword searches of free-text orders. ResultsA total of 77,936 MDS assessments for 19,705 long-stay residents with ADRD in 322 NHs were identified; 14.8% (SD 35.6) of residents had behaviors per month using MDS alone, 16.2% (SD 36.9) using MDS and INTERACT, and 18.6% (SD 38.9) using MDS, INTERACT, and orders. Supplementing MDS with EMR data increased behavior identification by 3.8 percentage points (a 25.7% relative increase). Less than 0.5% had behaviors noted in all 3 sources consistently across study months. Conclusions and ImplicationsUsing EMR data increased detectable behaviors vs the MDS alone. The 3 sources captured different types of behaviors and using them together may be a more comprehensive identification strategy. These results are important for better targeting of interventions and allocation of resources to improve the quality of life for NH residents with ADRD-related behaviors.

Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility Study of a Web-Based Weekly Survey.

Caring for a family member living with dementia is costly. A major contributor to care demands, and therefore to the costs, are the behavioral symptoms of dementia. Here, we examine the feasibility of ascertaining costs related to caregiving from weekly web-based surveys collected during a telehealth-based behavioral intervention study-Support via Technology: Living and Learning with Advancing Alzheimer Disease. This study aims to determine the feasibility and acceptability of using a web-based weekly survey to capture real-time data on out-of-pocket caregiving expenses and time commitments associated with dementia care. To examine relationships between behavioral symptoms, care partner reactivity, burden, and out-of-pocket dementia care costs. Feasibility was measured by accrual, retention, and data completion by participating care partners. Behavioral symptoms, care partner reactivity, and burden were collected before and after the intervention from 13 care partners. Weekly web-based surveys queried Support via Technology: Living and Learning with Advancing Alzheimer Disease care partners about their out-of-pocket costs associated with care-related activities. The surveys included questions on out-of-pocket costs care partners incurred from hospitalizations and emergency department use, primary care provider visits, use of paid in-home care or respite services, use of prescription medications, and use of over-the-counter medications. The surveys also queried the amount of time care partners devoted to these specific care-related activities. Out-of-pocket costs of dementia care were collected via a web-based weekly survey for up to 18 months. In-home assistance was the most frequently reported type of out-of-pocket care expense and the costliest. care partners who paid for in-home assistance or respite reported more behavioral and psychological symptoms of dementia behaviors, higher reactivity, and higher burden than those who did not. This novel web-based weekly survey-based approach offers lessons for designing and implementing future cost-focused studies and care partner-supportive telehealth-based interventions for Alzheimer disease and related dementias (ADRD). The results correspond with the existing understanding of ADRD in that high family-related out-of-pocket costs are a typical part of the caregiving experience, and those costs likely increase with dementia severity. The results may also offer potential insights to health systems and policy makers as they seek to implement telehealth-based and related interventions that seek to better support people living with ADRD and their family care partners. ClinicalTrials.gov NCT04335110; https://clinicaltrials.gov/ct2/show/NCT04335110.

Understanding Family Caregivers' Needs in Coping with the Behavioral and Psychological Symptoms of People with Dementia: A Hermeneutic-Phenomenological Study.

Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD. The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being. This study used a hermeneutic-phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software. The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes. The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.

Extracting Critical Information from Unstructured Clinicians' Notes Data to Identify Dementia Severity Using a Rule-Based Approach: Feasibility Study.

The 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. We 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. We 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. We 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. Our 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.

Supporting Arab-American Families Living With Dementia: Testing a Culturally Adapted Program.

Limited access to support services due to language and cultural barriers often results in a belief that family alone is the only option during times of need among Arab Americans. We test whether participation in a culturally adapted version of the Alzheimer's Association "Living with Alzheimer's" educational program is associated with positive outcomes for Arab-American care partners (N = 58). We present a single group design using paired t-tests that demonstrate reduced care burden and increased care satisfaction from pre- to post-participation. Family conflict trended downward after program participation. Findings provide preliminary data to illustrate culturally adapted Alzheimer's disease and related dementia (ADRD) educational programs hold promise to help family members caring for a person living with ADRD, even when such programs are not generally accepted by cultural norms.