ArticleBMJ open2024
Protocol for a telephonic mixed methods study to understand needs and find solutions for bereaved dementia caregivers.
Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed.
- Caregiver experiences after the death of a person with dementia with Lewy bodies: A mixed-methods analysis.Journal of Alzheimer's disease : JAD · 2025Article
- Mapping the Trajectories of Social Relations for White, Black, and Hispanic/Latino Individuals Approaching Death With Dementia.The journals of gerontology. Series B, Psychological sciences and social sciences · 2025Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
introductionMost caregivers of people living with dementia will experience bereavement within 10 years, but study of and support for their needs rarely persists following the death of their care recipients. A single model that leverages theoretical insights as well as observation from lived experience might help identify who will have greater difficulty following dementia-related bereavement and suggest core mechanisms to target to relieve clinical and subclinical consequences. The millions of existing bereaved dementia caregivers likely have considerable insight into ways to improve experience. Rather than creating interventions from scratch, researchers might leverage those insights to more rapidly improve the lives of bereaved dementia caregivers. METHODS AND ANALYSIS: This study uses a transformative mixed methods approach to explore the needs of caregivers for individuals with Alzheimer's disease (AD) and AD-related dementias, incorporating both quantitative surveys (n=400) and qualitative semistructured interviews (n=45) across diverse subgroups. The study described in this protocol aims to quantitatively test a new model based on self-determination theory to help understand when and why bereaved dementia caregivers experience better and worse outcomes following bereavement. The study also aims to qualitatively explore the ways that bereaved dementia caregivers might meet their needs to inform future interventions. ETHICS AND DISSEMINATION: The study adheres to institutional guidelines, ensuring participant consent and minimising risks through verbal consent procedures and the removal of personal identifiers from survey responses. The study team will share findings widely through academic publications, conferences and targeted outreach to advocacy groups and healthcare professionals, while also providing concise summaries of results to participants and making them accessible through the lab's website.
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Registered trials
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