bluuebunny/crossref_metadata_2025_split huggingface dataset:
Behaviour support planning in residential aged care ‐ pilot to explore implementation of new legislation in Australia
Authors: Wesson Jacqueline , Wales Kylie , Hewitt Jennifer , Flavin Theresa M , Gresham Meredith D , Tan Amy , Brodaty Henry 
Published: January 2025

AbstractBackgroundBehaviour support plans (BSPs) for people in residential aged care (RAC) were mandated nationally in 2019 for those who require, or may require, restrictive practices as part of their care. The legislation aims to reduce and potentially eliminate restrictive practices: long‐standing problems of their inappropriate use were highlighted by the Royal Commission into Aged Care Quality and Safety (2018).Many people living with dementia will be impacted: up to 90% experience changed behaviours; 54% of people in RACs have dementia; and approximately 20% experience cognitive decline without a diagnosis.There is no research examining how BSPs are implemented in practice since legislation was introduced. Our exploratory pilot study encompasses behaviour support policies, BSPs and staff views to identify practices, themes, barriers and enablers. This paper focuses on the content of BSPs.MethodRAC providers were recruited via professional networks and requested to include two sites, submitting three BSPs for residents from each site. Age, gender and diagnosis from redacted plans were extracted, with legislation used as a framework to extract further content for analysis, including behaviours and non‐pharmacological strategies prescribed.ResultPreliminary results are presented with analysis continuing. Seven providers (24 sites) across eastern Australian states submitted sixty BSPs, which varied in format, content, and length (range 1‐27 pages). Residents were mostly female (n = 41; 68%), aged 84 years (mean)(± 8.0 years; range 65‐98), and according to BSPs, had dementia/cognitive impairment (n = 57; 95%). Agitation and ‘wandering’ were the most frequently reported behaviours. Restrictive practices use was common (n = 46, 77%), including chemical restraint (n = 14; 30%), environmental secure unit restraint (n = 14; 30%), or both chemical and environmental restraint (n = 15; 33%).Variability in number and specificity of behaviour support strategies prescribed was evident: some plans included 4‐5 generic strategies, such as offering drinks/snacks; others detailed multiple strategies, including specific times of need and clear resident support preferences.ConclusionOur study suggests that implementation of behaviour support legislation as reflected in care planning documentation is inconsistent, in terms of what constitutes behaviour and how best to support residents. Positive framing of behaviour support is limited. Guidance and education for the sector are urgently indicated.
Cognition‐related Network Organization in Parkinson's Disease with Mild Cognitive Impairment and Dementia
Authors: Nakano Yoshikazu , Vo An , Nguyen Nha , Tang Chris C , Eidelberg David 
Published: January 2025

AbstractBackgroundThe Parkinson's disease (PD) cognition‐related covariance pattern (PDCP) was derived from network analysis of metabolic positron emission tomography (PET). The expression score is a feasible imaging biomarker that correlates with neuropsychological test performance. Graph analysis within specific networks characterizes brain function, particularly in terms of assortativity, which reflects the tendency to connect to nodes with similar degree values. However, PDCP assortativity is unclear.MethodsA total of 102 patients with PD underwent neuropsychological testing and [18F]‐fluorodeoxyglucose PET. Patients scoring less than 130 on the Dementia Rating Scale‐2 (DRS‐2) were classified as having PD with dementia (PDD). PD with mild cognitive impairment in single or multiple functions (sMCI or mMCI) was defined as having one (sMCI) or two or more (mMCI) of the following criteria: DRS‐2 subscore (Attention < 35, Initiation/Perseveration < 35, Construction < 6, Conceptualization < 35, Memory < 24), Wisconsin Card Sorting Test < 13 (executive), Hooper Visual Organization Test < 30 (visuospatial), and Boston Naming Test < 48 (language). The others were defined as having normal cognition (PD‐NC). We identified 35 anatomical regions of interest (ROIs) as nodes corresponding to the PDCP network. The pairwise correlation at each node of normalized metabolic activity derived from FDG‐PET data was calculated in each group by 100 bootstrapping iterations. The assortativity coefficient was calculated as the Pearson correlation coefficient of degrees between connected node pairs. Group differences were tested by repeated measures analysis of variance as group and threshold coefficients.ResultsThere were 22 PD‐NC, 24 sMCI, 31 mMCI, and 25 PDD. Demographic data are shown in Table 1. PDCP assortativity showed no significant differences between PD‐NC and sMCI (P = 0.23). However, it was increased in mMCI and PDD compared to PD‐NC and sMCI (P < 0.01). In addition, it was higher in PDD than in mMCI (P < 0.001) (Figure 1).ConclusionsAssortativity in the PDCP network is a potential predictor of the transition from MCI to dementia in PD patients. Furthermore, patients with cognitive impairment in multiple functions are at risk of developing dementia.
An Exploration of Caregiver Health and Wellbeing
Authors: Anderson Maria E 
Published: January 2025

AbstractBackgroundMany individuals with health problems and/or disabilities are largely dependent on the help of an informal caregiver, most often a family member with whom they live (CDC Report, 2018). A recent report by the Alzheimer’s Association (2023) found that, compared with caregivers of people without dementia, twice as many caregivers of those with dementia have reported significant emotional, financial, and physical difficulties.Despite the important role that caregivers have in our society, research on potential factors that may buffer the negative impacts of caregiving has been lacking. A small number of studies conducted in this area have shown, for example, that holding positive beliefs toward caregiving may contribute meaningfully to the care individuals with disabilities and health problems receive (e.g., Kim & Bolkan, 2018). But generally, studies on this topic tend to focus on healthcare professionals (e.g., Zimmerman et al., 2005), not informal caregivers (Brodaty & Donkin, 2009)Previous work on older adults has shown that holding positive beliefs can meaningfully impact one’s health, quality of life, and even lifespan (e.g., Levy et al., 2004; Levy et al., 2018). This has also been demonstrated experimentally; activating age‐related stereotypes in healthy older adults has been shown to improve memory performance in domains generally thought to decline with age (Levy et al., 1996).MethodsThe current study seeks to add to our understanding of the impact that a caregiver’s own positive or negative beliefs toward their role can have on their own well‐being. Our study used a scrambled‐word task to expose caregivers to either positive or negative stereotypes related to caregiving. We then measured the perception of burden, confidence in their role as a caregiver, and perception of their quality of life.ResultsPreliminary results showed that a prime of negative language (e.g., “struggle” or “guilt”) may be powerful enough to cause individuals to perceive their burden as greater compared to those primed with positive language (“wisdom” and “useful”).ConclusionThis follow‐up study will explore more deeply the effects that perceptions around support and confidence have on an individual’s feeling of positivity toward caregiving.
Caregiving and cognition: findings from the Atherosclerosis Risk in Communities (ARIC) Study
Authors: Powell Danielle , Zhang Wuyang , Coresh Josef , Kucharska‐Newton Anna M. , Kent Erin , Saylor Martha Abshire , Ballew Shoshana , Ornstein Katherine , Deal Jennifer A. , Reed Nicholas S. 
Published: January 2025

AbstractBackgroundCaregiving for older adults requires balancing multiple tasks ranging in complexity and demand. While often characterized as burdensome, there are also positive outcomes related to caregiving including potential benefits to health outcomes. Although older adults are themselves often caregivers, the association between caregiving and cognitive outcomes has not been routinely studied. We examine incident dementia among older self‐identified caregivers versus non‐caregivers. In secondary analysis, we examine the association between caregiving and 6‐year change in cognitive performance.MethodThe Atherosclerosis Risk in Communities (ARIC) Study, an ongoing population‐based cohort study (since 1987) in four US communities, measured self‐reported caregiving status via telephone questionnaire in 2015. Cognitive measures (global, executive function, memory, language domains), adjudicated dementia status and participant characteristics were obtained during study visits. Accounting for sociodemographic characteristics, we examined the association between caregiving and development of incident dementia over a 6‐year period (2015 baseline to 2021) using Cox proportional hazard models and change in standardized global and domain‐specific cognitive factor scores over 6 years using linear mixed methods.ResultAmong 4,514 ARIC participants (mean age 75.1, 60% female, 18% self‐reported Black), 382 self‐identified as a caregiver. No differences by caregiver status were observed in sociodemographic and health characteristics. Forty‐five (11.7%) caregivers experienced incident dementia over 6 years of follow‐up. In fully adjusted models, there was 30% decreased risk of incident dementia among caregivers (HR 0.69; 95% CI: 0.51,0.94) compared to non‐caregivers (Figure 1). Relative to non‐caregivers, caregivers had significantly better cognitive scores at study baseline. However, no difference in rate of change in global or domain‐specific cognition was observed.ConclusionCaregiving was associated with decreased risk of incident dementia over 6‐years. We noted higher baseline cognitive performance but not rates of decline in caregivers versus non‐caregivers. Our longitudinal findings highlight potential positive health outcomes for older self‐identified caregivers. Further study of cognition among older adult caregivers would inform national and policy initiatives seeking to support caregivers’ health and function.
What’s in a label? The importance of clinical specificity from the perspective of patients with primary progressive apraxia of speech
Authors: Utianski Rene L , Meade Gabriela , Duffy Joseph R , Clark Heather M. , Botha Hugo , Whitwell Jennifer L. , Josephs Keith A. 
Published: January 2025

AbstractBackgroundDiscussion surrounding the nomenclature of the “nonfluent/agrammatic” spectrum of progressive speech‐language disorders has largely focused on the clinical‐pathological and neuroimaging correlations, with some attention paid to the prognostication afforded by differentiating clinical phenotypes. Progressive apraxia of speech (AOS), with or without agrammatic aphasia, is generally associated with an underlying tauopathy; however, patients have offered a unique perspective on the importance of distinguishing between difficulties with speech and language that extends beyond pathological specificity. This study aimed to provide insight into the experience of patients with primary progressive AOS (PPAOS), with particular attention to their diagnostic journey.MethodA qualitative research approach was used. Structured interviews were conducted with three prosodic and one phonetic predominant PPAOS patients, judged representative of our research cohort, who were previously received other diagnoses, including primary progressive aphasia (PPA). A current PPAOS diagnosis and willingness to discuss the details of their diagnostic workup and reflect upon their experience were the inclusion criteria. One patient preferred to provide written responses. Each interview was reviewed, and the collective contents were examined using thematic analysis.ResultThe primary themes were identity, community, and planning. Patients expressed: 1) the importance of the alignment of AOS with their difficulties, specifically that they had no difficulty with thinking of words or with comprehension (i.e., no aphasia); 2) not sharing attributes with PPA patients and their observed clinical presentations; and 3) the desire to capitalize upon their retained skills for treatment, for example “I intend to retain my ‘voice’ even as I lose my speaking ability.”ConclusionUnderstanding the experiences of PPAOS patients may inform future iterations of progressive speech‐language spectrum diagnostic criteria and the consistency of their use, along with intervention recommendations. The specificity of a PPAOS diagnosis is meaningful to patients as it relates to their identity, sense of community, and approach to future planning. Further work will evaluate the experience of patients with a broader spectrum of progressive speech‐language disorders along with their care partners. More work is underway to outline the predictive value of an AOS diagnosis, relative to co‐occurring aphasia severity, to inform better prognostication.
Development and validation of new measure to assess social connection in long‐term care residents: the SONNET study
Authors: Sommerlad Andrew 
Published: January 2025

AbstractBackgroundLong‐term care (LTC) home residents may be isolated or lonely. Social connection is important for their physical, mental and cognitive health, quality of life and care. However, measuring social connection in LTC residents is challenging and there are no existing measures with adequately established psychometric properties. We aimed to develop and test a new measure of social connection for LTC residents.MethodThe SONNET study consisted of three projects with data collection carried out in parallel in LTC homes in Canada and the UK. First, we conducted a systematic review of existing measures of social connection in LTC residents, finding 62 studies reporting on 38 measures; none had sufficient evidence to be recommended for use. Second, we conducted qualitative interviews about key components of social connection with 67 LTC residents with and without dementia, family caregivers, staff, and clinicians. Third, we used these findings to inform candidate items for a scale with resident‐rated and proxy‐rated versions based on measurable domains and indicators of social engagement and social connectedness. We refined and reduced these through patient and public engagement and pilot interviews. We pre‐tested the long‐form scale in LTC residents for usability, missing data, response option distribution, internal consistency and factor structure. We then field‐tested the final SONNET measure for reliability, content and construct validity.ResultWe tested the SONNET measure with 111 LTC residents, including 40 with dementia (mean age 85.3y.) The measure was feasible with complete data in 86.8% of resident‐rated responses and 98.8% of carer‐rated responses. Internal consistency was high (resident‐rated scale α = 0.85, proxy‐rated α = 0.83) Exploratory factor analysis showed that SONNET scale sum scores are reliable in measuring overall social connection, and subdomains ‘social engagement’ and ‘social connectedness’.ConclusionThe SONNET measure assesses key domains of social connection in LTC residents and there is preliminary evidence of its reliability and validity. Further studies of its psychometric properties in independent samples of LTC residents including longitudinal data to assess its sensitivity to detect change and predictive and cross‐cultural validity are required. The SONNET measure will be freely available for researchers to use.
Emergency Department Experiences of People Living with Dementia
Authors: Gilmore‐Bykovskyi Andrea L , Block Laura M 
Published: January 2025

AbstractBackgroundOver half of the 6 million persons living with dementia (PLWD) in the United States visit emergency departments (EDs) annually. Because EDs play a vital role in providing care to PLWD, there has been increased attention to improving the ED care experience. Yet, measures to evaluate the ED care experience for PLWD focus predominantly on care utilization or distal outcomes (e.g., ED revisit, mortality) and may not adequately address aspects of the ED care experience itself or what matters most to PLWD during ED visits. To address this gap, this study aims to identify care priorities of PLWD during ED visits to inform the development of a Person‐Centered Outcome Measure for use by PLWD to facilitate evaluation of those priorities.MethodsThis presentation will discuss findings from interviews with PLWD and care partners of PLWD during ED encounters which were analyzed using thematic analysis. Descriptive findings were categorized into one of four inductively‐derived evaluation domains, from which preliminarily evaluation questions were developed.ResultsInterviews were conducted with 31 participants, consisting of 15 care partners, 10 PLWD, and 3 dyads (Table 1). Descriptive findings reported by both PLWD and care partners emphasized their priorities for ED care, including the importance of being informed about the care and testing they received, knowing the roles of those on their care teams, and feeling that their goals for care were addressed. Some PLWD and care partners evaluated domains differently; i.e., overall evaluated ED experience positively but goals of care were not met. Table 2 presents the evaluation domains derived through analysis and preliminary questions designed to facilitate evaluation of these domains.ConclusionsFindings demonstrate that evaluation of ED care experiences is complex and multi‐faceted, and emphasize that assessment strategies are needed that target multiple domains of the experience including goal alignment, approach to care, and overall perception of experience. Findings indicate PLWD and care partners value feeling informed in the ED, and many cite the importance of being aware of the impact of cognition. Evaluations of the ED experience differs between PLWD and care partners, and by stage of dementia, requiring further investigation.
Accountable Care Organizations and Medicare Payments for Dementia Patients Across Race and Social Vulnerability
Authors: Chen Jie 
Published: January 2025

AbstractBackgroundBlack and Hispanic ADRD patients often incur substantially higher costs related to Alzheimer’s disease and related dementia (ADRD). Neighborhood‐level vulnerabilities are also linked to increased risks of adverse health conditions. Emerging evidence has suggested that Accountable Care Organizations (ACOs) work effectively to promote ADRD care. This study aims to investigate the variations in Medicare cost for ADRD by race and ethnicity and social vulnerabilities and to further examine the variation by beneficiaries’ enrollment in ACOs among ADRD patients.MethodUsing the longitudinal datasets of the 2016 ‐ 2020 Medicare Beneficiary Summary File, our study examined Medicare payments for patients newly diagnosed with ADRD and tracked these payments for the year preceding the diagnosis and for the subsequent three years. We calculated annual Medicare and beneficiary payments (OOP) for Medicare Fee‐For‐Service beneficiaries aged 65 or older. In addition, using beneficiaries’ zip codes, we merged the Medicare claims data with the CDC’s Social Vulnerability Index (SVI). Finally, we linked the dataset with the Medicare Shared Savings Program ACO to measure beneficiary‐level ACO enrollment.ResultsBlack patients newly diagnosed with ADRD and patients living in the most vulnerable areas encountered the highest total cost and OOP. Black patients enrolled in ACOs had a total cost of $37,244.31 in their diagnosis year, compared to $39,678.12 for those not enrolled in ACOs. This cost discrepancy sustained and increased to $4,225 three years post‐diagnosis. Differences in total costs among Hispanic and White ADRD patients by ACO affiliation were nominal at the diagnosis year. However, after three years post‐diagnosis, these differences became more pronounced. ADRD patients living in the most vulnerable areas without ACO affiliations faced the highest total cost ($39,635.83) than their ACO counterparts ($37,283.09) and those living in other SVIs.ConclusionsResults indicated that Black and Hispanic ADRD patients and ADRD patients living in areas with higher social vulnerability would gain more from ACO enrollment compared to their counterparts. Results of the study shed light on whether CMS innovation models like ACO and GUIDE can and where they can target to bridge gaps in ADRD care and promote more health equity.
Development of a Person‐Centered Measure of Dementia Caregiving Style
Authors: Leggett Amanda N , Tsuker Sophia , Miner Jennifer A , Lai Jin‐Shei , Troost Jonathan , Carlozzi Noelle E 
Published: January 2025

AbstractBackgroundApproaches to caregiving interventions are often “one‐size‐fits‐all”, yet family caregivers for individuals with dementia have unique caregiving styles with which they enact daily care. Mixed‐methods work by this team identified 5 distinct caregiving style profiles that vary in: orientation toward oneself or the care partner, adaptability, understanding of dementia, emotional expression, and behavioral management. This study seeks to develop a person‐centered assessment of caregiving style such that interventions and services can be targeted to caregivers’ unique styles of care.MethodPerson‐centeredness of the Style measure is assessed with the NIH‐funded LINC‐AD’s Person‐Centered Measure Evaluation Tool (PC‐Met). Development phases assessed included: mixed‐methods exploratory research on caregiving style, iterative development and refinement of an item pool, cognitive interviews with caregivers, expert review, literacy and translatability review, and field testing of the refined items in 200 family/friend caregivers for a person living with dementia.ResultPerson‐centered practices in the development of a caregiving style measure include: co‐creation (e.g., caregiver feedback throughout, caregiver interview), accommodation (e.g., full disclosure of topics, exploring across stage of disease), pragmatism (e.g., translatability review), incorporation (e.g., using positive versus loss language), biopsychosocial/cultural components (e.g., utility across multiple settings), and systemic focus (e.g., use of shared language).ConclusionCaregiving style is associated with key outcomes of care (e.g., caregiver burden) and thus a person‐centered assessment measure can help tailor services and interventions to best fit unique styles of care, ultimately improving well‐being of the caregiver and quality of care for the person living with dementia.