bluuebunny/crossref_metadata_2025 huggingface dataset:
Reliability and validity of the Health‐Related Quality of Life Instrument with 8 Items for measuring health‐related quality of life in family caregivers of people with dementia
Authors: Choi Yu Mi , Seo Hyun‐Ju , Kim Seong Min
Published: January 2025

Background

Caring for people with dementia can be demanding and challenging, requiring constant support and attention. Family caregivers often experience high‐stress levels, depression, and overall strain. To enhance the quality of life of family caregivers, it is crucial to use accurate measurement tools to identify their needs.

It is unclear whether the Health‐Related Quality of Life Instrument with 8 Items (HINT‐8) is suitable for measuring the HRQoL of Korean family caregivers of people with dementia, as no studies have been conducted to assess its applicability.

This study aims to assess the reliability and validity of the HINT‐8 tool compared with EQ‐5D‐5L and WHOQOL‐BREF in measuring the HRQoL of family caregivers of people with dementia in Korea.

Method

This study is designed as a methodological study, using a cross‐sectional design to verify the reliability and validity of HINT‐8. The Three HRQoL measures ‐ HINT‐8, EuroQoL 5‐Dimension 5‐Level (EQ‐5D‐5L), and WHOQOL‐BREF were provided to 340 family caregivers with people with dementia in dementia relief centers and home‐visiting nursing centers in Korea. The HRQoL scores obtained using the HINT‐8 were evaluated for subgroups with known differences based on demographics and recipient‐related characteristics (known‐group validity). Convergent and divergent validity to assess the Correlation coefficients of the HINT‐8 with other instruments and the intra‐class correlation coefficient (ICC) for test‐retest reliability were evaluated.

Result

The study will calculate descriptive statistics (including median, first quartile, third quartile, minimum, maximum, mean, and standard deviation) for all responses. We will also compare weighted percentages to examine ceiling effects for each HRQoL instrument. We will present the results of the construct validity, test‐retest reliability, and known‐group validity of HINT‐8.

Conclusion

This study will show the validity and reliability of HINT‐8 for measuring health‐related quality of life in family caregivers of people with dementia in a Korean context.
Alzheimer’s disease subtypes based on cerebrospinal fluid proteomics have distinct CSF lipid profiles
Authors: Tijms Betty M.
Published: January 2025

Background

Disease mechanisms underlying Alzheimer’s disease (AD) are heterogenous amongst patients. We recently identified five distinct AD subtypes in cerebrospinal fluid (CSF) proteomic data with data‐driven techniques (Figure 1). Two of these subtypes were characterised by brain barrier dysfunction: one with choroid plexus dysfunction, and another with blood‐brain barrier dysfunction. Since most lipid transport takes place across these barriers, we compared these two subtypes on CSF lipid levels.

Method

We included 419 individuals with abnormal amyloid across the clinical spectrum (i.e., AD) and 196 controls with intact cognition and normal AD biomarkers from the Amsterdam Dementia Cohort and related studies with CSF proteomic subtyping available. Next, we performed untargeted complex lipidomics with CSH‐QTOF mass spectrometry. Of 3532 lipids detected, 270 could be mapped to known classes. We compared AD barrier subtypes to controls on CSF lipid levels, controlling for sex and age with general linear models.

Result

Of the 3532 lipids compared to controls, blood‐brain barrier dysfunction AD subtype had mostly increased levels of 302 lipids (148 with a known class; Figure 2, all p<0.05), whereas the choroid plexus subtype had mostly decreased levels of 314 lipids (163 known class;, all p<0.05) with an overlap of 150 lipids. These lipids included mostly glycerophospholipids, ceramides, and sphingomyelins. The blood‐brain barrier AD subtype further had increased levels of 14 tryglicerides, which were unaltered in the choroid plexus subtype. No specific alterations in CSF levels of known lipid classes were observed for the choroid plexus subtype.

Conclusion

We previously identified 5 AD subtypes with distinct underlying mechanisms, including two subtypes with involvement of either the blood‐brain barrier or the choroid plexus. The subtypes with different type of brain barrier dysfunction had opposite alterations in CSF levels of lipids from specific classes. This implies that these barriers have a distinct role in lipid metabolism and transport alterations in AD, which may require specific treatments.
Clinicoradiologic correlates of corticolimbic index (CLix) and glial activation differences among neuropathologic subtypes of Alzheimer’s disease
Authors: Murray Melissa E. , Dunlop Sara R
Published: January 2025

Background

Selective corticolimbic vulnerability to tau pathology in Alzheimer’s disease (AD) underlies clinicopathologic heterogeneity. The goal of this presentation will be to examine spatial heterogeneity of tangle distribution on a continuum through the utility of the corticolimbic index (CLix).

Method

We will discuss the development of CLix in the Florida Autopsied Multi‐Ethnic (FLAME) cohort, which sought to collapse the spatial distribution of thioflavin‐S tangle counts in AD (n=1361) to assign a continuum: hippocampal sparing with cortical predominance (<10), representative/typical (≥10 to <30), and limbic predominant with cortical sparing (≥30). The relationship with atypical, non‐amnestic clinical presentations will be described. Relevant clinical measures, including age at symptomatic onset and longitudinal decline on mini‐mental state examination (MMSE) will be examined. Digital pathology measures of AD (tau [AT8, GT‐38], amyloid‐β [6F/3D]) and glial activation (astrogliosis: GFAP, activated microglia/macrophage: CD68) will be shown in hippocampus and association cortices (n=60). To further extend these findings to the antemortem space, CLix score will be examined in an independent, autopsied neuroimaging group (n=93).

Results

Lower CLix score correlated with younger age at symptomatic onset (R=0.39, p<0.001), faster MMSE decline (R=0.27, p<0.001), and associated with non‐amnestic clinical presentations (median=13 vs. 21, p<0.001). Lower CLix score correlated with greater hippocampal volume on MRI (R=‐0.45, p<0.001) and higher flortaucipir‐PET uptake (e.g., posterior cingulate‐precuneus cortex: R=‐0.74, p<0.001). Advanced tangle maturity burden (GT‐38) differed across all regions (p<0.001). Hippocampal sparing AD exhibited higher cortical tau pathology and reduced cortical activated microglia/macrophage.

Conclusions

Corticolimbic tangle distribution links with AD clinical features and neuroimaging changes. Reduced activated microglia/macrophage in association cortices of relative hippocampal sparing AD may contribute to higher tau burden. Corticolimbic vulnerability should be considered for personalized therapies targeting immune dysregulation.
Improved gray and white matter volume loss analysis in Alzheimer's Disease using high resolution 3D MRI
Authors: Salokhiddinov Marufjon , Singh Dharmesh , Ismailova Munojat , Kumar Dileep
Published: January 2025

Background

Alzheimer's disease is a common neurodegenerative disease that affects the lives of millions of people worldwide. In our study, we aim to evaluate the effectiveness and accuracy of the latest automated brain volume analysis method for GM and WM analysis in health control and patients with AD and to compare optimized cut‐off values for both regions between subjects.

Method

The original baseline scans from 37 HC (HC) and 39 mild AD patients downloaded from ADNI. High‐resolution T1‐weighted MRI scans were collected for each participant using a sagittal 3D MP‐RAGE sequence. Volumetric differences between groups were determined in this investigation utilizing a cascaded weakly supervised confidence integration network (CINet). Data were collected from two areas of interest (ROI): white matter volume and gray matter volume. Total CGM encompassed all the gray matter in the frontal, parietal, temporal, and occipital lobes and all gray matter that could be visually identified as being a part of the cerebral cortex. Volume was measured in cc.

Result

Results showed that healthy subjects GM and WM brain volume values were significantly greater than mild AD subjects by ∼18%. The mean ± SD of GM volume for HC was 618.41 ± 50.54 cc and for mild AD patients was 542.40 ± 101.37 cc. The mean WM brain volume was 502 ± 59.60 cc for HC and 445 ± 60 cc for mild AD subjects. Both GM and WM volume values for HC showed significant (p < 0.05) higher (∼18% in both GM and WM volumes) than mild AD subjects. There was very low correlation (r = 0.15) for GM volume of HC and mild AD, and r = 0.02 for WM volume of HC and mild AD patients.

Conclusion

In conclusion, the CINet combined V‐Net method has demonstrated encouraging results in quantifying GM and WM volume in MRI images of people with early‐stage AD. Compared to conventional human segmentation techniques, this automated approach has various advantages, including improved productivity, accuracy, and dependability.
Brainstem Atrophy across the AD Clinical Spectrum: An Automated Volumetric MRI study
Authors: Bhalla Deepali M , Bendlin Barbara B. , Antuono Piero G. , Granadillo Elias
Published: January 2025

Background

Studies suggest that structural changes in the midbrain are linked to Alzheimer’s disease (AD) symptoms such as memory, sleep, and emotional disturbances. Brainstem atrophy, particularly in the locus coeruleus, has also been linked with poorer executive function. Studies showing brainstem as one of the first regions affected by AD largely employed novel imaging techniques such as neuromelanin‐sensitive MRI, which is limited to research environments. Prior studies have established the utility of hippocampal measures using automated volumetric software such as Neuroreader (NR) aiding in diagnosis of AD, and is emerging as an inexpensive and easily accessible tool. Here, we used NR to assess brainstem (BS) volumes of AD patients to examine the potential to capture an effect using conventional T1‐weighted MRI.

Methods

We conducted a retrospective chart review (N=300) of participants who underwent volumetric scan evaluated with NR after 2015 (Table 1). NR was used to generated BS and hippocampal volumes corrected for total intracranial volume (BS‐Vc and Hip‐Vc) among 3 groups (N=100 each): subjective cognitive impairment (SCI), mild cognitive impairment (MCI), and AD Dementia. Categorization of participants was based on the current clinical diagnostic criteria for AD clinical syndrome. Multiple regression models were run to determine group‐wise differences in BS‐Vc and Hip‐Vc, correcting for age, gender, and education.

Results

Preliminary results showed no difference in BS‐Vc across groups. Hip‐Vc was significantly different between SCI and AD (β = ‐0.048, p <0.001) and MCI and AD (β = ‐0.033, p =0.001) groups. Interestingly, with correction for age, education level, and disease stage, male gender was associated with lower BS‐Vc (β = ‐0.053, p <0.001); consistent with AD literature suggesting a differential susceptibility to AD pathology based on gender.

Conclusion

We found no differences in BS‐Vc across the AD clinical spectrum, possibly due to low power of this study, or limitations in NR to detect atrophy in brainstem sub‐structures such as the locus coeruleus. Differences in BS‐Vc across genders was independent of disease status, suggesting a role of gender susceptibility in AD that is specific to the brainstem. Further exploration of these findings in future studies with increased power is needed.
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

Background

Behaviour 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.

Method

RAC 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.

Result

Preliminary 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.

Conclusion

Our 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

Background

The 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.

Methods

A 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.

Results

There 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).

Conclusions

Assortativity 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

Background

Many 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).

Methods

The 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.

Results

Preliminary 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”).

Conclusion

This 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

Background

Caregiving 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.

Method

The 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.

Result

Among 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.

Conclusion

Caregiving 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

Background

Discussion 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.

Method

A 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.

Result

The 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.”

Conclusion

Understanding 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

Background

Long‐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.

Method

The 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.

Result

We 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’.

Conclusion

The 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

Background

Over 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.

Methods

This 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.

Results

Interviews 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.

Conclusions

Findings 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

Background

Black 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.

Method

Using 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.

Results

Black 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.

Conclusions

Results 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

Background

Approaches 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.

Method

Person‐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.

Result

Person‐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).

Conclusion

Caregiving 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.
Evaluating Predictors of Cognitive Impairment: Insights from a Cross‐Sectional Analysis in the Wayuu Indigenous Population
Authors: Preciado Jose Hernandez , Torres Wanda , Vargas Alex Dominguez , Pianneta Yesenia , Medina Mauricio , Sinisterra Marybel , Vargas José
Published: January 2025

Background

Cognitive impairment (CI) encompasses a wide range of symptoms and signs associated with a progressive decline in cognitive functions, which adversely affect the quality of life and autonomy of patients. Indigenous communities have been found to have a higher prevalence of CI and dementia. However, there is limited knowledge regarding the prevalence of CI in ethnically diverse populations, such as the Wayuu indigenous community. The aim of this study was to identify predictive factors of cognitive impairment in the Wayuu indigenous population.

Methods

A cross‐sectional study. We included 100 Wayuu indigenous and 100 non‐indigenous individuals from the northern coast of the Colombian Caribbean. Cognitive function was assessed using the Prolonged Latency Test through electroencephalography, and it was categorized as follows: normal, low beta activity (mild CI), frontal slowing (moderate CI), and alterations in alpha activity (severe CI). Sociodemographic, clinical, cognitive, and functionality variables were evaluated. Multivariate logistic regression analysis was conducted to evaluate predictive factors associated with CI.

Results

A higher prevalence of moderate and severe CI was observed in the Wayuu indigenous population compared to non‐indigenous individuals (90% vs. 47% and 5% vs. 4%, p<0.05, respectively). Wayuu ethnicity (OR: 2.23, 95%CI: 1.95‐8.51, p = 0.02), epilepsy (OR: 5.5, 95%CI: 1.88–16.1, p = 0.006), and residing in the town of Uribia (OR: 30, 95%CI: 1.24‐767, p = 0.03) were identified as risk factors for CI. Normal levels of vitamin B12 (200‐900 pg/ml) (OR: 0.04, 95%CI: 0.02‐0.96, p = 0.04) and normal results in the Yesavage test (OR: 0.24, 95% CI: 0.09–0.65, p = 0.004) were found to be protective against CI.

Conclusions

This study highlights the need to address epilepsy, depression, and vitamin B12 deficiency in Wayuu indigenous communities to design cognitive health intervention strategies.
Music Attuned Technology: Care via eHealth (MATCH): A proof‐of‐concept study trialling a music therapy informed mobile application for caregivers of people living with dementia
Authors: Baker Felicity , Sousa Tanara , Tamplin Jeanette , Waycott Jenny , Thompson Zara , Vidas Dianna , Woodward‐Kron Robyn , Stretton‐Smith Phoebe , Lautenschlager Nicola T , Lampit Amit , Kulik Lars , Skafidas Stan
Published: January 2025

Background

MATCH (Music Attuned Technology – Care via eHealth) is a music and health application that supports caregivers of people living with dementia to use music strategically to better manage care through virtual training and intuitive music technology. This study trialled a prototype version of the MATCH app with family caregivers and people with dementia residing in the community.

Method

16 Dyads trialled the prototype MATCH app. After completing the virtual training in the app, family caregivers created personalised playlists within the app and used strategies learnt during training with the person they care for at least twice per week over 8 weeks. Pre‐post measures on the Neuropsychiatric Inventory Questionnaire (NPI‐Q), Cohen‐Mansfield Agitation Inventory and Acceptability of the mobile app and training were captured to detect change in symptoms and feasibility of the application. Qualitative measures including a participation diary and qualitative interviews captured participant perspectives and usage of the app.

Results

Significant pre‐post changes in symptom severity (‐4.23 [4.9], 95% CI ‐7.2 to ‐1.3, p = 0.009) and symptom distress (‐5.69 [5.8], 95% CI ‐9.2 to ‐2.2, p = 0.004) on the NPI‐Q were found, but not on the Cohen‐Mansfield Agitation Inventory (‐4.38 [11.6], 95% CI ‐9.9 to 1.34, p = 0.109). Subscales of the NPI‐Q found significant changes to mood symptoms (‐1.23 [1.9], 95% CI ‐2.36 to ‐0.01, p = 0.036) and frontal symptoms (‐1.45 [23], 95% CI ‐2.87 to ‐0.05, p = 0.043), but not agitation/aggression (‐1.1 (1.9], 95% CI ‐2.21 to 0.07, p = 0.062). 85% of carers were satisfied with the MATCH app features, and 92% were satisfied with the music training. Qualitative findings revealed that participants found the strategies to be effective, and that they were able to integrate music‐based strategies into their care routines.

Conclusion

The MATCH app was found to be feasible and acceptable; family caregivers reported that MATCH training was understandable and useful. There is preliminary evidence that music interventions implemented by trained family caregivers are effective in reducing neuropsychiatric symptoms.
Improving mealtimes for people with dementia: Feasibility study
Authors: Faraday James , Hand Annette
Published: January 2025

Background

Mealtimes are a fundamental part of life; eating and drinking well is vital for health well‐being. People living with dementia are at increased risk of eating and drinking difficulties, and may experience difficulties at mealtimes due to the cognitive component of this condition. Such difficulties are prevalent in care homes, where people living with dementia are often dependent on carers at mealtimes. Mealtime care for this population can be variable, with an unhelpful focus on process and systems. This study will test the feasibility of an evidence‐based training intervention designed to improve mealtimes for people with dementia.

Methods

The study builds on previous work in which a care homes training intervention was co‐developed with experts by experience, informed by systematic review data and ethnographic fieldwork. Up to 30 staff are being recruited to participate in the study and receive the training intervention, across several care homes. Outcome measures are the Sense of Competence in Dementia Care Staff (SCIDS) scale, and Confidence in Mealtime Care questionnaire, which has been developed with experts by experience. Focus groups are also being used to gather participants’ views on the intervention. Data is being analysed using descriptive statistics and thematic analysis. A patient and public involvement (PPI) advisory group, comprising care home residents and staff, has shaped the research process throughout.

Results

This feasibility study is essential to ensure the mealtime care training intervention is acceptable and practicable in care homes, and fit for purpose. The PPI advisory group have provided significant input into the design of the study, for example highlighting the importance of a skilled facilitator to deliver training, and advising on how best to measure staff confidence/knowledge. Results of the feasibility study are due later this year.

Conclusion

This study is designed to address uncertainties about a future randomised control trial (RCT) of a mealtime care training intervention in the care homes, including recruitment, attendance rate, and compliance with training. The RCT will also consider resident outcomes such as incidence of aspiration pneumonia, nutritional outcomes, and quality of life outcomes, as well and other outcomes including staff wellbeing.
The relationship of sleep duration and quality to cognitive impairment in cART‐treated HIV positive adults aged 50 and older in Kilimanjaro, Tanzania
Authors: Sison Megan Patricia , Urasa Sarah , Dekker Marieke , Mosha Jane , Minde Zawadi , Davidson Sean , Fotheringham Lachlan , Kisoli Aloyce , Worth Miranda , Sharpe Molly , Burrus Bethany , Walker Richard , Paddick Stella‐Maria
Published: January 2025

Background

HIV‐associated neurocognitive disorders (HAND) are prevalent complications of ageing with treated HIV, disproportionally affecting sub‐Saharan Africa. Causal HAND treatments are lacking worldwide; therefore, reversible factors are important to explore. Sleep duration and quality are frequently associated with risk of cognitive impairments. We explored the relationship between sleep duration and quality with cognitive impairments in older people living with HIV (PLWH) in Tanzania.

Method

This cross‐sectional observational study involved systematically sampled participants aged ≥50 undergoing longitudinal follow‐up for HAND in Kilimanjaro, Tanzania. Sleep duration and quality were measured subjectively using sleep diaries, the Chalder Fatigue Questionnaire and Epworth Sleepiness Scale, and objectively by wrist‐worn accelerometers. Contextual and subjective factors affecting sleep were evaluated using a locally‐developed questionnaire. HAND was diagnosed using 2007 ‘Frascati’ consensus criteria based on neuropsychological tests, clinical assessments, and informant histories. HIV disease severity was assessed using blood markers and case‐note review.

Result

Among 103 participants, 41 met criteria for HAND whilst 12 had non‐HAND cognitive impairments. Fragmented sleep (58.3%) and short nocturnal sleep durations (53.4%) were most prevalent. Average total sleep time (6.4 hours) was below the recommended seven hours. Every one‐point increase in Chalder Fatigue Questionnaire score increased the risk of HAND with functional impairment and non‐HAND cognitive impairments by 11.6% (Odds ratio = 1.116, CI(1.012,1.231)). Epworth Sleepiness Scale score and total sleep time were not associated with cognitive impairment.

Conclusion

These pilot data suggest significant association between symptomatic HAND and non‐HAND cognitive impairments with fatigue in older PLWH. Future studies should examine longitudinal risk and relationship with clinically‐diagnosed sleep disorders.
Biomarkers and their place in dementia research and practice‐ the lancet commission recommendations
Authors: Schneider Lon S. S.
Published: January 2025

Background

Research on biomarkers for Alzheimer’s pathology has progressed rapidly. We summarize the evidence and make recommendations about biomarkers for future clinical use.

Method

Our interdisciplinary, international, multicultural group of experts in the Lancet Commission on dementia adopted a triangulation framework, prioritizing systematic reviews and meta‐analyses and agreed on the best evidence for recommendations.

Result

Amyloid prevalence increases with age (>20% age 70; >30% age 80). As amyloid accumulation occurs many years before neurodegeneration or symptoms a positive biomarker alone does not strongly predict future impairment. Most amyloid positive, cognitively normal people do not develop Alzheimer’s dementia (Lopez et al 2024).

Neurodegeneration is more closely associated with cognitive decline than amyloid and tau fluid biomarkers. In a community‐based autopsy cohort, 8% of patients with plaques and tangles had incident dementia during their previous 5 years. But 68% of those with additional neurodegeneration had incident dementia. One population study of 2323 people found knowing blood‐based biomarkers status led to a tiny rise in concordance of prediction (0.88 to 0.9) in people with subjective cognitive impairment or MCI followed for 5 years. Biomarkers may not add value to prediction of Alzheimer’s dementia.

Plasma p‐tau181, p‐tau217, and p‐tau231 have as good or better accuracy than plasma Aβ42/Aβ40 ratio in predicting positive amyloid‐PET and in identifying people with amyloid pathology. Blood‐based biomarkers may be especially useful in the future to identify people with dementia who have very low likelihood for AD pathology and need further investigation.

Most research has been in samples of convenience and white populations with unclear generalisability. However, a recent community‐based sample of adults found no ethnic difference in plasma AD biomarkers when other risk factors were considered.

Conclusion

For people with dementia, plasma biomarkers may overcome the challenges of PET even as their predictive accuracy needs improvement. Clinical use, however, is limited to assessing the cause in people with dementia. Amyloid plaque‐predictive biomarkers are at the point where they could be used clinically for people with dementia but minding the populations and regions where they have been validated.