Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

Aaronson, Anna; Ashford, Miriam T.; Jin, Chengshi; Bride, Jessica; Decker, Josephine; DeNicola, Aaron; Turner, Robert W.; Conti, Catherine; Tank, Rachana; Truran, Diana; Camacho, Monica R.; Fockler, Juliet; Flenniken, Derek; Ulbricht, Aaron; Grill, Joshua D.; Rabinovici, Gil; Carrillo, Maria C.; Mackin, R. Scott; Weiner, Michael W.; Nosheny, Rachel L.

doi:10.1002/alz.13492

Cited by 3 publications

(1 citation statement)

References 40 publications

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“…These features define the so-called SCD-plus and include, but are not limited to, subjective decline in memory, the onset of SCD within the last five years, the feeling of worse performance compared to peers, and the presence of the APOE ε4 genotype [14]. Another feature is the confirmation of the cognitive impairment, albeit minimal, by an informant; this may also give valuable insight into subtle changes in complex activities of daily living, which may not be captured by standard neuropsychological tests [17].…”

Section: Who: Subjective Cognitive Declinementioning

confidence: 99%

Brain Health and Cognition in Older Adults: Roadmap and Milestones towards the Implementation of Preventive Strategies

Pozzi,

Remoli,

Tremolizzo

et al. 2024

Brain Sciences

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In this narrative review, we delve into the evolving concept of brain health, as recognized by the WHO, focusing on its intersection with cognitive decline. We emphasize the imperative need for preventive strategies, particularly in older adults. We describe the target population that might benefit the most from risk-based approaches—namely, people with subjective cognitive decline. Additionally, we consider universal prevention in cognitively unimpaired middle-aged and older adults. Delving into multidomain personalized preventive strategies, we report on empirical evidence surrounding modifiable risk factors and interventions crucial in mitigating cognitive decline. Next, we highlight the emergence of brain health services (BHS). We explain their proposed role in risk assessment, risk communication, and tailored interventions to reduce the risk of dementia. Commenting on ongoing BHS pilot experiences, we present the inception and framework of our own BHS in Monza, Italy, outlining its operational structure and care pathways. We emphasize the need for global collaboration and intensified research efforts to address the intricate determinants of brain health and their potential impact on healthcare systems worldwide.

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Section: Who: Subjective Cognitive Declinementioning

confidence: 99%

Brain Health and Cognition in Older Adults: Roadmap and Milestones towards the Implementation of Preventive Strategies

Pozzi,

Remoli,

Tremolizzo

et al. 2024

Brain Sciences

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The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials

Nosheny,

Miller,

Conti

et al. 2024

Alzheimer's & Dementia

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The Alzheimer's Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities, to ensure the success and maximize the impact of ADNI in advancing Alzheimer's disease (AD) research and clinical trials. It manages finances and develops policies for data sharing, publications using ADNI data, and access to ADNI biospecimens. The Core develops and executes pilot projects to guide future ADNI activities and identifies key innovative methods for inclusion in ADNI. For ADNI4, the Administrative Core collaborates with the Engagement, Clinical, and Biomarker Cores to develop and evaluate novel, digital methods and infrastructure for participant recruitment, screening, and assessment of participants. The goal of these efforts is to enroll 500 participants, including > 50% from underrepresented populations, 40% with mild cognitive impairment, and 80% with elevated AD biomarkers. This new approach also provides a unique opportunity to validate novel methods.Highlights The Alzheimer's Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities. The overall goal is to ensure ADNI's success and help design future Alzheimer's disease (AD) clinical trials. A key innovation is data sharing without embargo to maximize scientific impact. For ADNI4, novel, digital methods for recruitment and assessment were developed. New methods are designed to improve the participation of underrepresented populations.

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

Zhang,

Wang,

Chen

et al. 2024

JAD

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

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Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

Cited by 3 publications

References 40 publications

Brain Health and Cognition in Older Adults: Roadmap and Milestones towards the Implementation of Preventive Strategies

Brain Health and Cognition in Older Adults: Roadmap and Milestones towards the Implementation of Preventive Strategies

The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials

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

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