Sarah Banks, Emily Rogalski, Jennifer Medina, Andrea Skoglund, Darby Morhardt
Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers. This article introduces the reader to the 2 disorders, highlights the need for specialized resources, and describes the execution of the conferences. The need for similar resources to be offered in other regions is discussed.
{"title":"Organizing a Series of Education and Support Conferences for Caregivers of Individuals With Frontotemporal Dementia and Primary Progressive Aphasia.","authors":"Sarah Banks, Emily Rogalski, Jennifer Medina, Andrea Skoglund, Darby Morhardt","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers. This article introduces the reader to the 2 disorders, highlights the need for specialized resources, and describes the execution of the conferences. The need for similar resources to be offered in other regions is discussed.</p>","PeriodicalId":88358,"journal":{"name":"Alzheimer's care quarterly","volume":"7 4","pages":"243-250"},"PeriodicalIF":0.0,"publicationDate":"2006-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894711/pdf/nihms-209769.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"29095702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rebecca S Allen, Jung Kwak, Kristine L Lokken, William E Haley
This article presents an overview of end-of-life care for individuals with Alzheimer's disease (AD) and their family caregivers. We define end-stage AD, and review neuropsychological and behavioral characteristics along with concomitant issues in therapeutic assessment. We then review the literature regarding programs and treatments for end-stage AD, the need for advance care planning and family participation in medical decision-making, familial caregiving stress, and issues associated with palliative care and bereavement outcomes. Methodological issues in the extant research literature are addressed, including issues of treatment implementation, validity, and clinical significance. Translational research and demonstration projects are encouraged.
{"title":"End-of Life Issues in the Context of Alzheimer's Disease.","authors":"Rebecca S Allen, Jung Kwak, Kristine L Lokken, William E Haley","doi":"10.1901/jaba.2003.4-312","DOIUrl":"10.1901/jaba.2003.4-312","url":null,"abstract":"<p><p>This article presents an overview of end-of-life care for individuals with Alzheimer's disease (AD) and their family caregivers. We define end-stage AD, and review neuropsychological and behavioral characteristics along with concomitant issues in therapeutic assessment. We then review the literature regarding programs and treatments for end-stage AD, the need for advance care planning and family participation in medical decision-making, familial caregiving stress, and issues associated with palliative care and bereavement outcomes. Methodological issues in the extant research literature are addressed, including issues of treatment implementation, validity, and clinical significance. Translational research and demonstration projects are encouraged.</p>","PeriodicalId":88358,"journal":{"name":"Alzheimer's care quarterly","volume":"4 4","pages":"312-330"},"PeriodicalIF":0.0,"publicationDate":"2003-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2789353/pdf/nihms102673.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"28583530","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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