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Dementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
University of Michigan, Ann Arbor, MI, USA.
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.
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Alzheimers Dement
December 2024
Kaiser Permanente Washington Health Research Institute, Seattle, WA, USA.
Background: Medical records present a rich potential source of information on the lived experiences of people with dementia. These records are extensive and the work of extracting relevant data is labor-intensive. We sought to determine whether we could use natural language processing (NLP) approaches to sift through medical records to prioritize an enriched subset of notes illuminating the lived experiences of people with dementia.
View Article and Find Full Text PDFDementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: Familial frontotemporal dementia is an autosomal dominant heritable form of frontotemporal dementia, a form of dementia characterised by changes in personality, behaviour and communication which typically onsets in mid-life. Children of an affected parent are at 50% risk of inheriting the responsible genetic mutation and developing frontotemporal dementia themselves. Individuals living at-risk have high psychological morbidity, for example they report struggling with guilt and anxiety about risk to themselves and their children, decisions about whether to get tested, uncertainty about onset of symptoms, and see their risk as a barrier in life.
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Alzheimers Dement
December 2024
UsAgainstAlzheimer's, Washington, DC, USA.
Background: Previous What Matters Most (WMM) research identified and verified patient-important concepts among a diverse population of people living with Alzheimer's disease (PLWAD) and their care partners across all stages of Alzheimer's disease (AD). Additionally, a conceptual model of disease was developed using hypothesized domains and was further refined using qualitative data (Figure 1). This next phase of WMM research aims to quantify the importance of concepts, impacts, and outcomes and to determine priorities among PLWAD and care partners within a diverse sample including underrepresented ethnic and racial groups at each level of disease severity.
View Article and Find Full Text PDFDementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
Oregon Health & Science University, Portland, OR, USA.
Background: Persons with cognitive impairment may experience difficulties with language and cognition that interfere with their ability to make and communicate decisions. We developed an online visual tool to facilitate conversations about their preferences concerning supportive care.
Methods: We conducted Zoom interviews with persons with mild cognitive impairment (MCI) and mild to moderate dementia, using storytelling and a virtual tool designed to facilitate discussion.
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