bluuebunny/crossref_metadata_2025_split huggingface dataset:
ConnectShareCare builds connections among care partners of people with serious illness
Authors: O'Donnell Elizabeth A. , Buccelleto Andrea C. , Van Citters Aricca D. , Nelson Eugene C. , King Joel , Holthoff Megan , Kirkland Kathryn B. 
Published: December 2023

AbstractPeople living with chronic illnesses naturally turn to peers and community members to address the need for emotional support, practical advice, and quick help with emergent problems. Health systems have been slower to incorporate the expertise that comes from patients and caregivers/ care partners’ lived experience into the design and delivery of care. A coproduction learning health system model aims to draw on the expertise of all to deliver optimal “whole person” care and to capture learning for improvement in the process of care delivery. This model harnesses naturally occurring peer‐to‐peer connections outside the traditional healthcare system into facilitated support networks, which extend the scope of services offered by the health system to support lay care partners, thereby improving their resiliency and inviting them to share their expertise with others. With patients and care partners, we co‐designed and piloted an online facilitated support network, connectsharecare.org, to help persons providing care or support to an adult with a serious illness better prepare to cope with surprises that arise post diagnosis and/or during bereavement. The team prioritized two network functions (1) connecting care partners to information and (2) facilitating emotional support. Between its launch in April 2021 and January 2023 the network has grown to more than 200 members with more than 3,500 posts over 21‐months. Most members report satisfaction with the support and information received, and say that the network helps them find meaning and purpose by supporting others. The most frequently used discussion threads focus on well‐being, emotions, and sources of joy and hope. The network is being adapted and improved as we learn from the data generated. It is feasible to engage a multi‐stakeholder team to co‐design an online peer‐to‐peer facilitated support network for care partners of people with serious illness. ConnectShareCare is valued by care partners. This work has the potential to contribute to a coproduction learning health system for people living with Alzheimer’s disease and other dementias by (1) prioritizing and addressing potentially unique needs of their care partners, (2) generating data for continuous quality improvement, and (3) contributing to scientific knowledge.
Baseline and Six‐Month Actigraphy and Sleep‐monitoring Devices Help Differentiate Between Alzheimer’s Disease and Dementia with Lewy Bodies
Authors: Tsuang Debby W , Brown Karl , Shutes‐David Andrew , Payne Sarah , Jankowski Adrienne , Seto Edmund , St. Louis Erik K , Levendowski Daniel J , Wilson Katie 
Published: December 2023

AbstractBackgroundDementia with Lewy bodies (DLB) and Alzheimer’s disease (AD) are challenging to differentiate. Mobile health devices that measure motor and sleep domains between clinic visits may improve differential diagnosis.MethodParticipants with probable AD and probable DLB wore ActiGraph triaxial wGT3X‐BT actigraphy devices on their nondominant wrists for 2 weeks and multichannel Sleep ProfilerX8TM EEG devices on their foreheads for 2 consecutive nights.3 Actigraphy data were processed and scored using GGIR and activity counts in R. The Sleep Profiler characterizes abnormal slow‐wave sleep and non‐REM hypertonia (NRH).ResultAt baseline, participants with DLB (n = 9) had higher UPDRS scores and a higher likelihood of psychosis than participants with AD (n = 8; see Table 1). Using univariate Wilcoxon Rank‐Sum tests, we found that at baseline participants with DLB had lower daily activity counts, higher % time in NRH, and lower % time in REM sleep than participants with AD (unadjusted p‐values < 0.05; See Figure 1). In a recent 6‐month followup, activity levels were lower on average than baseline activity levels for both DLB (n = 5) and AD (n = 5). at 6‐months, the differences in % sleep in NRH increased between DLB participants (n = 5) and AD participants (n = 3) as average % NRH increase 6% in DLB and decreased 1% in AD (see Table 2). These 6‐month differences are not statistically significant, but data collection are ongoing. An exploration of methods for processing and scoring actigraphy data revealed that processing can result in wide range of findings. As a result, we have focused on actigraphy outcomes which are more suitable to older participants with dementia.ConclusionParticipants with DLB demonstrated lower baseline physical activity and higher rates of baseline sleep disturbances than participants with AD; sleep differences between DLB and AD appeared to increase over 6 months. Actigraphy and sleep‐monitoring devices are well tolerated in participants with dementia and they can reliably collect valid, useful activity and sleep data in between clinic visits.
Ethical social media use for dementia prevention research: Perspectives of research professionals and community members
Authors: Hrincu Viorica , Zaleski Grayden , Robillard Julie M. 
Published: December 2023

AbstractBackgroundEthical social media use underpins effective online engagement for dementia prevention research. Current social media guidelines are broad and lack empirical justification reflecting the values and priorities of the dementia community. By engaging professional and community experts, we seek to identify the ethical parameters of using social media for dementia prevention research.MethodWe conducted semi‐structured, qualitative interviews with professional experts working in dementia research (n = 15; e.g., researchers, coordinators) and experts by experience (n = 14; e.g., persons with lived experience). Experts were from Canada, the USA, the UK, and South America. Discussions were analyzed using thematic qualitative analysis methods.ResultProfessional experts revealed a dearth of ethical guidelines when using social media for research engagement, relying on informal sources of guidance to supplement ethics board approval. Areas identified as needing more attention included privacy concerns, handling instances of misinformation and self‐disclosure, the constraints of prescribed language, and moderating public reactions to posts. Experts by experience appreciated the educational benefits of social media for learning about healthy aging. They valued accessible resources but expressed uncertainty on distinguishing between facts and misinformation. Factors enhancing trust of social media content included transparent presentation, traceable sources, relationship‐building, and partnering with community organizations. Having a family history of dementia was a key motivator for engaging on social media. The negative consequences of diminished online privacy, such as stigma or being targeted for predatory practices, were a major ethical concern. Both groups discussed factors that dampen social media’s theoretical reach to diverse publics, such as existing inequalities permeating digital access (i.e., age, socioeconomic, literacy, English fluency, urban/rural) and past violations undermining trust. Nevertheless, participants cited social media’s wide reach as a societal benefit to improve research participation and awareness of dementia prevention. They acknowledged that younger aging populations have more digital fluency and may benefit more from social media research engagement.ConclusionResearch professionals and community members identified ethical and contextual factors surrounding the use of social media for dementia prevention, and a need for more guidance. The next project phase will use these data to inform the creation of consensus‐based guidelines for brain health research.
Identifying preclinical Alzheimer’s disease in the community with brief automated hand movement analysis: validation against plasma ptau181 and asymptomatic episodic memory decline
Authors: Alty Jane E , Bai Quan , Wang Xinyi , Li Renjie , Lawler Katherine , George Rebecca J St , Bindoff Aidan D , Roccati Eddy , Bartlett Larissa , Huang Guan , Rudd Kaylee , Collins Jessica M , Garg Saurabh , Hinder Mark , King Anna E , Vickers James C 
Published: December 2023

AbstractBackgroundDementia prevention and drug development is hindered by the lack of low‐cost population‐level tests to help identify preclinical Alzheimer’s disease (AD) in the community. Recent evidence suggests that precise analysis of hand movements may detect motor changes indicative of preclinical AD. The objective was to evaluate how TAS Test, a new online automated hand movement test, predicts preclinical AD biomarkers (plasma ptau181 and subtle episodic memory decline) in a cognitively asymptomatic cohort of older adults.MethodParticipants completed TAS Test online at home using their own computer without researcher assistance: a series of 10‐30 second index finger‐key and index finger‐thumb tapping tests recorded with a keyboard and/or webcam. Movement features including frequency, rhythm, pauses and accuracy were extracted. Participants also completed online tests of episodic memory, CANTAB Paired Associate Learning (CANTAB). A subset provided blood samples for ptau181 analysis. Accuracy of linear regression models comprising hand motor features to predict PAL scores and ptau181 levels, adjusted for confounding, was compared to null models (with only confounders: age, gender, education level, anxiety and depression) using R2adj and AIC. ΔAIC > 2 denotes statistical difference.Result1,228 adults (mean (SD) age, 65.8 (7.4) years; 73.0% female) completed TAS Test and CANTAB; 459 underwent ptau181 analysis. All keyboard tests improved prediction of asymptomatic episodic memory decline; the 3 step‐ (ΔAIC = 11.2; R2adj = 8.1%) and alternate‐ key (ΔAIC = 3.3; R2adj = 7.5%) tests ranked highest and were the only keyboard tests to improve prediction of ptau181 (3 step ΔAIC = 7.0; R2adj = 17.8%; alternate key ΔAIC = 3.4; R2adj = 17.4%). All finger‐thumb motor measures improved predictions of CANTAB scores and ptau181 levels; the highest performing tests were dominant hand tapping (CANTAB ΔAIC = 2.9; R2adj = 8.2%; ptau181 ΔAIC = 2.4; R2adj = 12.9%) and both hands dual‐task tapping (CANTAB ΔAIC = 3.0; R2adj = 6.8%; ptau181 ΔAIC = 8.7; R2adj = 11.9%).ConclusionTAS Test provides an accessible brief home‐based test for identifying preclinical AD risk. This novel approach holds potential as a pre‐screening/enrichment tool for identifying at risk cohorts for further investigation.
Time for Living & Caring: An Online Intervention to Support Dementia Caregivers’ Use of Respite
Authors: Utz Rebecca , Thompson Amber , Wong Bob , Iacob Eli , Sparks Catharine , Terrill Alexandra , Caserta Michael 
Published: December 2023

AbstractBackgroundBecause of the demanding care needs associated with dementia, family caregivers often have increasing anxiety and burden over time. Respite, defined as time away from caregiving, is the most requested type of caregiver support and is hypothesized to benefit caregiver wellbeing. However, many caregivers report low respite satisfaction, feeling as though they wasted their time or that they did not know how to use their respite time in a way that benefited them.MethodTime for Living and Caring (TLC) is a virtual coaching “app” that helps caregivers schedule and plan their respite time. With funding support from NIA (R01‐AG061946), we conducted a pilot test with dementia caregivers (n = 159), randomized into one of two delivery methods – an immediate group that could access all features and functions of the app for 16 weeks, and a delayed‐attention group that received initial instructions on calendaring for 8 weeks and then the more interactive coaching features during the second 8 weeks. This additive “dosing” model where the immediate group received “2 doses” in the first 8 weeks while the delayed‐attention group got “1 dose” initially and “1 dose” during weeks 8‐16 was evaluated using generalized linear modeling on caregiver‐reported anxiety and burden levels over time.ResultBoth immediate and delayed‐attention groups reported 1) increased respite time, 2) increased respite satisfaction, and 3) felt that they were better caregivers because of respite. At 8 weeks, the immediate group did not change in anxiety while the delayed group worsened (p < 0.001). At 16 weeks, the groups were similar in their anxiety levels. By the 20‐week follow‐up period, when neither group had access to TLC, both groups were worsening in their anxiety. Caregiver burden worsened at 16 weeks for the immediate group.ConclusionTLC shows potential as an intervention model to improve respite quality and minimize increases in anxiety and burden over time. Intervention delivery that provides additional features or instructions after the initial orientation may keep participants more engaged and result in better caregiver outcomes over time, compared to providing the full set of online resources all at once.
Enhanced Insight into Factors Impacting Driving Ability Across Manual Dexterity, Satisfaction with Managing Daily Activities and Select Cognitive Domains in People with Dementia Associated Disease
Authors: Weller Joanna , Kaczmarek Olivia , Gopie Ian , Bumstead Barbara , Buhse Marijean , Zarif Myassar , Gudesblatt Mark 
Published: December 2023

AbstractBackgroundDementia associated diseases (DAD) refers to a group of disorders characterized by progressive cognitive impairment (CI) that adversely influences ability to function independently in real world activities. CI may reflect abnormalities across multiple cognitive domains (CD) to varying degrees. Successful completion of activities of daily living (ADL) is progressively impaired DAD. Symptom recognition by family and clinicians typically present following irreversible damage, highlighting a demand for effective methods of early DAD diagnosis and treatment. Neurocognitive screening tools combined with patient reported outcomes (PRO) might provide deeper insight into the patterns and progression of DAD. Comparison of PRO across Upper Extremity Function Score (UEF), Self‐Efficacy for Managing Daily Activities (SEMDA), and cognitive performance measures with driving status in PwDAD might enhance understanding of disability across a continuum and identify the medical necessity of transportation assistance for PwDAD.MethodRetrospective review of examiner independent information collected in the course of routine care of a population of PwDAD including demographics, driving status, UEF, SEMDA, executive function (NT‐EF), and motor function, reflecting time to move and accuracy, (NT‐MF) of a multi‐domain computerized cognitive test (CTB). T‐tests were utilized for analysis with significance (p<0.05).Result529 PwDAD (59% female, average age 74.4 +/‐ 8.8 years) provided the data collected to compare patient driving status with UEF, SEMDA, NT‐MF, NT‐EF scores. Statistically significant (p<0.01) relationships were identified between driving status and PRO score for all domains: UEF, SEMDA, NT‐MF, and NT‐EF.ConclusionActive driving status in PwDAD is associated with better scores on a self‐reported upper extremity ability profile, self‐efficacy for managing daily activities as well as better executive function and cognitively defined motor function planning. While effective collaboration across a cognitive network provides for driving, simultaneous monitoring of UEF and SEMDA in conjunction with both NT‐MF, and NT‐EF might provide enhanced insight into driving impairment along a continuum. Improved awareness of the multiple potential paths of impairment and real‐world impact can offer proactive opportunities for intervention as well as novel important endpoints to measure therapy efficacy.
Dementia Associated Disorders and Cognitive Impairment – The Relationship of Quantitative Multi‐Domain Computerized Cognitive Testing to Patient Centric Perception of Health Literacy
Authors: Gopie Ian , Kaczmarek Olivia , Weller Joanna , Baek Steven , Bumstead Barbara , Buhse Marijean , Zarif Myassar , Gudesblatt Mark 
Published: December 2023

AbstractBackgroundDementia associated diseases (DAD) refers to clinical conditions characterized by progressive cognitive impairment (CI) that interferes with ability to function independently. However, cognitive impairments can vary in degree and combination of cognitive deficits across multiple cognitive domains. Traditional history and cognitive assessments in clinic are insufficient to identify these varied combinations. Therefore, a clinician may be unaware of these variations and impact on patient QOL and decision‐making. Effective quantitative analysis of cognitive function can be obtained in routine care by a validated, examiner‐independent, sensitive, and reliable computerized cognitive assessment battery (CAB‐NT). Patient reported outcomes (PRO) provide information regarding patient perception of ability across clinically relevant concerns. The BRIEF Health Literacy survey (BHL) PRO is used to find the degree to which one can read, understand, exchange, and use health information and resources. Comparison to computerized cognitive testing has not been explored in this population.MethodRetrospective cross‐sectional analysis of patients with DAD (PwDAD) who completed both PRO BHL and CAB in routine care on the same day. CAB‐NT included 7 cognitive domains: memory (Mem), executive function (Exe), attention (Att), information processing speed (Inf), visual‐spatial (Vis), verbal function (Ver), motor skills (Mot) and global cognitive summary score (GCS). Linear regression analysis was explored with significance (p<0.05).Result329 PwDaD, average age of 70±13 years, 63.2% female. Linear regression was used to analyze trends between BHL and CAB. Significant correlations (p = 0.05) were found for CAB‐NT vs: BHL: GCS‐r = 0.42, Vis‐r = 0.36, Mem‐r = 0.31, Exe‐r = 0.39, Ver‐r = 0.25, Mot‐r = 0.22, Inf‐r = 0.32, and Att‐r = 0.28. One‐way ANOVA was performed between BHL (inadequate, marginal, and adequate) and the cognitive domains of the CAB‐NT. Significant differenced (p = 0.05) were found between the three BHL groups within each cognitive domain.ConclusionPatient centric DAD performances on CAB‐NT is related to patient‐reported health literacy. The more impaired the CAB‐NT scores, the poorer patient‐perceived health literacy reported. Patient centric recognition of CI can enhance clinician’s recognition of those people who may require additional information for health‐care decisions or incorporate health‐care proxy for effective shared decision making in routine care. Incorporation of this patient centric information can potentially lead to improved outcomes and satisfaction.
Continuous associations between remote self‐administered cognitive measures and amyloid and tau PET biomarkers of Alzheimer’s disease
Authors: Boots Elizabeth A. , Frank Ryan D. , Fan Winnie Z. , Christianson Teresa J. , Karstens Aimee J. , Kremers Walter K. , Stricker John L. , Machulda Mary M. , Fields Julie A. , Hassenstab Jason J. , Graff‐Radford Jonathan , Vemuri Prashanthi , Jack Clifford R. , Knopman David S. , Mielke Michelle M. , Petersen Ronald C. , Stricker Nikki H. 
Published: December 2023

AbstractBackgroundEasily accessible and self‐administered cognitive assessments that can aide early identification of individuals at risk for Alzheimer’s disease (AD) dementia are critical for timely intervention. Mayo Test Drive (MTD) is a remote, self‐administered, multi‐device compatible, web‐based cognitive assessment (Stricker et al., 2022). We investigated continuous associations between MTD and amyloid and tau PET biomarkers and compared the strength of association to PET biomarkers and in‐person cognitive measures.Method556 adults from the Mayo Clinic Study of Aging participated (mean age = 70.6; mean education = 16.0 years; 50.7% female; 97.5% white). Participants were predominantly cognitively unimpaired (95.3%; 4.7% had a consensus diagnosis of mild cognitive impairment). Participants completed (1) brain amyloid and tau PET scans, (2) in‐person neuropsychological assessment including Mayo Preclinical Alzheimer’s disease Cognitive Composite (Mayo‐PACC) and Global‐z, and (3) remote MTD comprised of the Stricker Learning Span (SLS) and the Symbols test, which are combined into an MTD composite. Multiple regressions adjusted for age, sex, and education queried associations between imaging biomarkers [amyloid meta‐region of interest (ROI), tau meta‐ROI, and tau entorhinal cortex (EC)‐ROI)] and composite and subtest scores from remote and in‐person measures. Davidson‐Mackinnon J‐test compared R‐squared values of models with remote versus in‐person composites.ResultLower performances on MTD composite and Mayo‐PACC were associated with higher amyloid meta‐ROI (p’s<.05; Table 1). MTD composite was also negatively associated with tau meta‐ROI and EC‐ROI (p’s<.05). For memory measures, SLS sum of trials was negatively associated with tau meta‐ROI (p = .01) and EC‐ROI (p<.001) with no associations between AVLT sum of trials and PET (p’s = .06; Table 2). Among processing speed/executive function measures, worse Trails B performance was associated with higher amyloid meta‐ROI (p<.001). Symbols and Digit Symbol Coding were not associated with PET (p’s = .29). A multivariable model with MTD explained significantly less variance (p = .04) for amyloid meta‐ROI (adjusted R‐squared = 0.165) than a multivariable model with Mayo‐PACC (adjusted R‐squared = 0.176); remote and in‐person composite measures were comparable for other associations (p’s>.05).ConclusionMTD is associated with continuous measures of amyloid and tau PET biomarkers of AD, demonstrating criterion validity for MTD. Several associations were comparable to relationships between gold‐standard in‐person neuropsychological tests and imaging biomarkers.