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Dementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
National Ageing Research Institute, Melbourne, VIC, Australia.
Background: We have co-produced with carers of people with dementia (hereafter carers) a culturally tailored iSupport Virtual Assistant (VA), namely e-DiVA, to support English-, Bahasa- and Vietnamese-speaking carers in Australia, Indonesia, New Zealand and Vietnam. The presented research reports qualitative findings from the e-DiVA user-testing study.
Method: Family carers and healthcare professionals working in the field of dementia care were given the e-DiVA to use on their smartphone or handheld device for 1-2 weeks.
Dementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
University of California, San Francisco, San Francisco, CA, USA.
Background: Prior research shows that caregiving for people living with dementia (PLWD) varies with cultural, institutional, and social structural context, but less is known about the role of context in dementias of different etiologies. We compared experiences of caregiving in frontal-temporal dementia (FTD) versus non-FTD dementias using community-based comparative ethnography. We expected to find differences in caring for people living with FTD (PLWFTD) versus people living with other dementias (PLWOD).
View Article and Find Full Text PDFBackground: Dementia is a life-changing condition for patients and caregivers. Response to a diagnosis often includes grief, shock, and despair. Unfortunately, evidence demonstrates inadequate use of person-centered communication practices during diagnostic disclosure, which adds to psychological distress.
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.
View Article and Find Full Text PDFDementia Care Research and Psychosocial Factors.
Alzheimers Dement
December 2024
University of Kansas Alzheimer's Disease Research Center, Fairway, KS, USA.
Background: Latinx individuals bear a disproportionate burden of Alzheimer's disease and related dementias (ADRD), with higher risk, underdiagnosis, and limited access to quality care. Primary care providers (PCPs) are crucial for early detection and management, yet organizational and policy factors significantly impact their ability to provide culturally competent and equitable ADRD care for this community. This study explores PCP perspectives to inform the development of accessible models that improve early diagnosis, preventive care, and quality of life for Latinx individuals with ADRD.
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