Evaluation of the Electronic Clinical Dementia Rating for dementia screening

IMPORTANCE: The Clinical Dementia Rating (CDR) is a well-validated instrument widely used to detect and stage dementia due to Alzheimer disease. The digital Electronic Clinical Dementia Rating (eCDR) can be remotely self-administered and automatically scored, with potential to facilitate efficient dementia screening and staging. OBJECTIVE: To evaluate the association of the eCDR with the CDR and other in-clinic assessments for screening older adults for cognitive impairment. DESIGN, SETTING, AND PARTICIPANTS: This multisite, cross-sectional study used baseline data from a longitudinal, observational study from 2020 to 2023, including up to 3 years of follow-up. Participants were enrolled from 3 Alzheimer Disease Research Centers and the Brain Health Registry. Participants (aged ≥55 years, with a study partner, and no acute or unstable major medical conditions) were recruited during in-clinic visits or by automated emails. EXPOSURES: Participants completed the Uniform Data Set Version 3 (UDS; including the CDR) in supervised clinical research settings, and then completed the eCDR remotely, online and unsupervised, using their own device. MAIN OUTCOMES AND MEASURES: The primary outcomes were eCDR scores (item; categorical box and global; continuous box and global), CDR scores (item; categorical box and global), and UDS assessment scores. Associations were evaluated using linear and logistic regressions. RESULTS: A total of 3565 participants were contacted, and 288 were enrolled. Among 173 participants with item-level data (mean [SD] age, 70.84 [7.65] years; 76 women [43.9%]), eCDR to CDR concordance was 90% or higher for 33 items (63%) and 70% to 89% for 13 items (25%). Box (domain) level concordance ranged from 80% (memory) to 99% (personal care). The global score concordance rate was 81%. κ statistics were fair to moderate. Among 206 participants with box and global scores (mean [SD] age, 71.34 [7.68] years; 95 women [46.1%]), eCDR continuous global score was associated with CDR global (categorical) score with an area under the receiver operating characteristic curve of 0.79 (95% CI, 0.70-0.87). Correlations between eCDR and in-clinic UDS assessments were similar to those between CDR sum of box scores and the same in-clinic assessments. CONCLUSIONS AND RELEVANCE: These findings suggest that the eCDR is valid and has potential use for screening and assessment of older adults for cognitive and functional decline related to Alzheimer disease. Instrument optimization and validation in diverse cohorts in remote settings are crucial for evaluating scalability and eCDR utility in clinical research, trials, and health care settings

The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations.

Efficient identification of cognitive decline and Alzheimer's disease (AD) risk in early stages of the AD disease continuum is a critical unmet need. Subjective cognitive decline is increasingly recognized as an early symptomatic stage of AD. Dyadic cognitive report, including subjective cognitive complaints (SCC) from a participant and an informant/study partner who knows the participant well, represents an accurate, reliable, and efficient source of data for assessing risk. However, the separate and combined contributions of self- and study partner report, and the dynamic relationship between the two, remains unclear. The Subjective Cognitive Decline Professional Interest Area within the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment convened a working group focused on dyadic patterns of subjective report. Group members identified aspects of dyadic-report information important to the AD research field, gaps in knowledge, and recommendations. By reviewing existing data on this topic, we found evidence that dyadic measures are associated with objective measures of cognition and provide unique information in preclinical and prodromal AD about disease stage and progression and AD biomarker status. External factors including dyad (participant-study partner pair) relationship and sociocultural factors contribute to these associations. We recommend greater dyad report use in research settings to identify AD risk. Priority areas for future research include (1) elucidation of the contributions of demographic and sociocultural factors, dyad type, and dyad relationship to dyad report; (2) exploration of agreement and discordance between self- and study partner report across the AD syndromic and disease continuum; (3) identification of domains (e.g., memory, executive function, neuropsychiatric) that predict AD risk outcomes and differentiate cognitive impairment due to AD from other impairment; (4) development of best practices for study partner engagement; (5) exploration of study partner report as AD clinical trial endpoints; (6) continued development, validation, and optimization, of study partner report instruments tailored to the goals of the research and population

Poor Sleep Quality and Daytime Fatigue Are Associated With Subjective but Not Objective Cognitive Functioning in Clinically Relevant Hoarding.

BackgroundHoarding disorder is a chronic psychiatric condition of increasing public health concern. Recent investigation suggests a positive association between hoarding severity and insomnia symptoms. However, these findings have yet to be replicated, and the prevalence and type of sleep impairment experienced by individuals with clinically relevant hoarding symptoms (CHSs) are not known.MethodsThis analysis of 20,473 members of the internet-based Brain Health Registry uses multivariate logistic regression modeling and structural equation modeling to evaluate the relationship between hoarding symptoms, sleep impairment, adverse health, and cognitive functioning.ResultsMore than 12% of study participants endorsed CHSs or subclinical hoarding symptoms. After adjustment for demographic characteristics and psychiatric comorbidity, individuals with CHSs reported increased odds of sleep impairment in nearly all domains. The odds of poor sleep quality (adjusted odds ratio, 2.07; 95% CI, 1.83-2.34), sleep disturbances (adjusted odds ratio, 2.15; 95% CI, 1.91-2.43), and daytime dysfunction (adjusted odds ratio, 5.84; 95% CI, 5.12-6.65) were two- to fivefold higher for individuals with CHSs compared with those without. For all measures, the proportion of individuals reporting sleep impairment increased with hoarding severity. In our structural equation model, sleep impairment acted as a partial mediator on the indirect pathways from hoarding to subjective cognitive complaints and poorer quality of life.ConclusionsIdentification of sleep problems among those with hoarding symptoms is a critical component of hoarding assessment. Additional research is needed to better understand the mechanisms underlying the observed relationships, including neurobiological underpinnings, and to examine the role of sleep management in treatment for hoarding behaviors

Cognitive Performance in Parkinson’s Disease in the Brain Health Registry

The study of cognition in Parkinson's disease (PD) traditionally requires exhaustive recruitment strategies. The current study examines data collected by the Brain Health Registry (BHR) to determine whether ongoing efforts to improve the recruitment base for therapeutic trials in Alzheimer's disease may be similarly effective for PD research, and whether online cognitive measurements can discriminate between participants who do and do not report a PD diagnosis. Participants enrolled in the BHR (age ≥50) with self-reported PD data and online cognitive testing available were included (n = 11,813). Associations between baseline cognitive variables and diagnostic group were analyzed using logistic regression. Linear mixed effects models were used to analyze longitudinal data. A total of 634 participants reported PD diagnosis at baseline with no self-reported cognitive impairment and completed cognitive testing. Measures of visual learning and memory, processing speed, attention, and working memory discriminated between self-reported PD and non-PD participants after correcting for multiple comparisons (p values < 0.006). Scores on all cognitive tests improved over time in PD and controls with the exception of processing speed, which remained stable in participants with PD while improving in those without. We demonstrate that a novel online approach to recruitment and longitudinal follow-up of study participants is effective for those with self-reported PD, and that significant differences exist between those with and without a reported diagnosis of PD on computerized cognitive measures. These results have important implications for recruitment of participants with PD into targeted therapeutic trials or large-scale genetic and cognitive studies

Hoarding symptoms are associated with higher rates of disability than other medical and psychiatric disorders across multiple domains of functioning.

BackgroundHoarding symptoms are associated with functional impairment, though investigation of disability among individuals with hoarding disorder has largely focused on clutter-related impairment to home management activities and difficulties using space because of clutter. This analysis assesses disability among individuals with hoarding symptoms in multiple domains of everyday functioning, including cognition, mobility, self-care, interpersonal and community-level interactions, and home management. The magnitude of the association between hoarding and disability was compared to that of medical and psychiatric disorders with documented high disability burden, including major depressive disorder (MDD), diabetes, and chronic pain.MethodsData were cross-sectionally collected from 16,312 adult participants enrolled in an internet-based research registry, the Brain Health Registry. Pearson's chi-square tests and multivariable logistic regression models were used to quantify the relationship between hoarding and functional ability relative to MDD, diabetes, and chronic pain.ResultsMore than one in ten participants endorsed clinical (5.7%) or subclinical (5.7%) hoarding symptoms (CHS and SCHS, respectively). After adjusting for participant demographic characteristics and psychiatric and medical comorbidity, CHS and SCHS were associated with increased odds of impairment in all domains of functioning. Moderate to extreme impairment was endorsed more frequently by those with CHS or SCHS compared to those with self-reported MDD, diabetes, and/or chronic pain in nearly all domains (e.g., difficulty with day-to-day work or school: CHS: 18.7% vs. MDD: 11.8%, p < 0.0001) except mobility and self-care. While those with current depressive symptoms endorsed higher rates of impairment than those with hoarding symptoms, disability was most prevalent among those endorsing both hoarding and comorbid depressive symptoms.ConclusionsHoarding symptoms are associated with profound disability in all domains of functioning. The burden of hoarding is comparable to that of other medical and psychiatric illnesses with known high rates of functional impairment. Future studies should examine the directionality and underlying causality of the observed associations, and possibly identify target interventions to minimize impairment associated with hoarding symptomatology

Hoarding disorder is associated with self-reported cardiovascular / metabolic dysfunction, chronic pain, and sleep apnea.

Hoarding behaviors are positively associated with medical morbidity, however, current prevalence estimates and types of medical conditions associated with hoarding vary. This analysis aims to quantify the medical morbidity of hoarding disorder (HD). Cross-sectional data were collected online using the Brain Health Registry (BHR). Among 20,745 participants who completed the Hoarding and Clutter and Medical History thematic modules, 1348 had HD (6.5%), 1268 had subclinical HD (6.1%), and 18,829 did not meet hoarding criteria (87.4%). Individuals with HD were more likely to report a lifetime history of cardiovascular/metabolic conditions: diabetes (HD adjusted odds ratio (AOR):1.51, 95% confidence interval (CI):[1.20, 1.91]; subclinical HD AOR:1.24, 95% CI:[0.95, 1.61]), and hypercholesterolemia (HD AOR:1.24, 95% CI:[1.06, 1.46]; subclinical HD AOR:1.11, 95% CI:[0.94, 1.31]). Those with HD and subclinical HD were also more to report chronic pain (HD AOR: 1.69, 95% CI:[1.44, 1.98]; subclinical HD AOR: 1.44, 95% CI:[1.22, 1.69]), and sleep apnea (HD AOR: 1.58, 95% CI:[1.31, 1.89]; subclinical HD AOR:1.30, 95% CI:[1.07, 1.58]) than non-HD participants. For most conditions, likelihood of diagnosis did not differ between HD and subclinical HD. Structural equation modeling revealed that more severe hoarding symptomatology was independently associated with increased cardiovascular/metabolic vulnerability. The assessment and management of medical complications in individuals with HD is a fundamental component in improving quality of life, longevity, and overall physical health outcomes

Study partner‐reported decline identifies cognitive decline and dementia risk

OBJECTIVE:Identifying individuals at risk for cognitive decline, Mild Cognitive Impairment (MCI), and dementia due to Alzheimer's disease (AD) is a critical need. Functional decline is associated with risk and can be efficiently assessed by participants and study partners (SPs). We tested the hypothesis that SP-reported functional decline is an independent predictor of dementia risk and cognitive decline. METHODS:In 1048 older adults in the Alzheimer's Disease Neuroimaging Initiative (ADNI), we measured associations between Everyday Cognition Scale scores (ECog, self- and SP-reported versions) and (1) baseline and longitudinal change in neuropsychological test (NPT scores) across multiple cognitive domains; (2) diagnostic conversion to MCI or dementia. Models included Mini Mental Status Exam (MMSE) score and ApoE ε4 genotype (APOE) as predictors. Model fits were compared with and without predictors of interest included. RESULTS:SP-reported ECog was the strongest predictor of cognitive decline across multiple domains, as well as diagnostic conversion. Self-reported ECog was associated with baseline NPT scores in some cognitive domains, and diagnostic conversion to MCI in participants with biomarker evidence for AD (elevated brain β-amyloid, Aβ). Models including SP-reported ECog were significantly stronger at predicting outcomes. CONCLUSIONS:SP-reported functional decline is an independent indicator of cognitive decline and dementia risk, even when accounting for cognitive screening, genetic risk, demographics, and self-report decline. The results provide a rationale for greater utilization of SP-reported functional decline to identify those at risk for dementia due to AD and other causes