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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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>This study uses a transformative mixed methods approach to explore the needs of caregivers for individuals with Alzheimer\u2019s 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>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\u2019s website.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2024-086559","type":"journal-article","created":{"date-parts":[[2024,7,22]],"date-time":"2024-07-22T13:01:58Z","timestamp":1721653318000},"page":"e086559","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":4,"title":["Protocol for a telephonic mixed methods study to understand needs and find solutions for bereaved dementia caregivers"],"prefix":"10.1136","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5345-7643","authenticated-orcid":false,"given":"Zachary G","family":"Baker","sequence":"first","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary Gemma","family":"O\u2019Donnell","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabrina","family":"Garcia-Arias","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yingyan","family":"Huang","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joahana","family":"Segundo","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashley N","family":"Millenbah","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivia M","family":"Neubert","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Isabel","family":"Huerta","sequence":"additional","affiliation":[{"name":"Edson College of Nursing and Health Innovation, Arizona State University, Tempe, Arizona, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2024,7,22]]},"reference":[{"key":"2025120521333061000_14.7.e086559.1","first-page":"1598","article-title":"Alzheimer\u2019s disease facts and figures","volume":"19","year":"2023","journal-title":"Alzheimers Dement"},{"key":"2025120521333061000_14.7.e086559.2","doi-asserted-by":"crossref","first-page":"688","DOI":"10.1016\/j.trci.2018.08.010","article-title":"Caregivers dying before care recipients with dementia","volume":"4","author":"Gaugler","year":"2018","journal-title":"Alzheimers Dement (N Y)"},{"key":"2025120521333061000_14.7.e086559.3","doi-asserted-by":"crossref","first-page":"1109","DOI":"10.1002\/gps.3946","article-title":"Survival in dementia and predictors of mortality: a review","volume":"28","author":"Todd","year":"2013","journal-title":"Int J Geriatr Psychiatry"},{"key":"2025120521333061000_14.7.e086559.4","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2014.01.004"},{"key":"2025120521333061000_14.7.e086559.5","doi-asserted-by":"crossref","first-page":"825","DOI":"10.1177\/0193945916658881","article-title":"Dementia Caregiver grief and bereavement: an integrative review","volume":"39","author":"Arruda","year":"2017","journal-title":"West J Nurs Res"},{"key":"2025120521333061000_14.7.e086559.6","doi-asserted-by":"publisher","DOI":"10.1002\/gps.3795"},{"key":"2025120521333061000_14.7.e086559.7","doi-asserted-by":"crossref","first-page":"477","DOI":"10.1017\/S1041610221002787","article-title":"Grief in family Carers of people living with dementia: A systematic review","volume":"35","author":"Crawley","year":"2023","journal-title":"Int Psychogeriatr"},{"key":"2025120521333061000_14.7.e086559.8","doi-asserted-by":"publisher","DOI":"10.1097\/01.JGP.0000203178.44894.db"},{"key":"2025120521333061000_14.7.e086559.9","doi-asserted-by":"crossref","unstructured":"O\u2019Donnell MG , Baker ZG . 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