Theresa Hüer, Milena Weitzel, Godwin Denk Giebel, Pascal Raszke, Jürgen Wasem, Johannes Levin, Georg Nübling, Olivia Wagemann, Elisabeth Wlasich, Johannes Pantel, Valentina Tesky, Arthur Schall, Anke Walendzik
{"title":"[唐氏综合征患者的阿尔茨海默氏痴呆症:关于诊断和治疗中的医疗保健缺陷以及解决方法的指南辅助专家访谈结果]。","authors":"Theresa Hüer, Milena Weitzel, Godwin Denk Giebel, Pascal Raszke, Jürgen Wasem, Johannes Levin, Georg Nübling, Olivia Wagemann, Elisabeth Wlasich, Johannes Pantel, Valentina Tesky, Arthur Schall, Anke Walendzik","doi":"10.1007/s00391-024-02371-8","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>People with Down syndrome have a genetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them.</p><p><strong>Method: </strong>In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis.</p><p><strong>Results: </strong>A lack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as a key challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions.</p><p><strong>Conclusion: </strong>The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.</p>","PeriodicalId":49345,"journal":{"name":"Zeitschrift Fur Gerontologie Und Geriatrie","volume":" ","pages":""},"PeriodicalIF":1.1000,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"[Alzheimer's dementia in people with Down syndrome : Results of guideline-assisted expert interviews on healthcare deficits in the diagnostics and treatment as well as solution approaches].\",\"authors\":\"Theresa Hüer, Milena Weitzel, Godwin Denk Giebel, Pascal Raszke, Jürgen Wasem, Johannes Levin, Georg Nübling, Olivia Wagemann, Elisabeth Wlasich, Johannes Pantel, Valentina Tesky, Arthur Schall, Anke Walendzik\",\"doi\":\"10.1007/s00391-024-02371-8\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>People with Down syndrome have a genetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them.</p><p><strong>Method: </strong>In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis.</p><p><strong>Results: </strong>A lack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as a key challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions.</p><p><strong>Conclusion: </strong>The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.</p>\",\"PeriodicalId\":49345,\"journal\":{\"name\":\"Zeitschrift Fur Gerontologie Und Geriatrie\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":1.1000,\"publicationDate\":\"2024-10-09\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Zeitschrift Fur Gerontologie Und Geriatrie\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s00391-024-02371-8\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"GERIATRICS & GERONTOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Zeitschrift Fur Gerontologie Und Geriatrie","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s00391-024-02371-8","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GERIATRICS & GERONTOLOGY","Score":null,"Total":0}
[Alzheimer's dementia in people with Down syndrome : Results of guideline-assisted expert interviews on healthcare deficits in the diagnostics and treatment as well as solution approaches].
Background: People with Down syndrome have a genetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them.
Method: In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis.
Results: A lack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as a key challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions.
Conclusion: The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.
期刊介绍:
The fact that more and more people are becoming older and are having a significant influence on our society is due to intensive geriatric research and geriatric medicine in the past and present. The Zeitschrift für Gerontologie und Geriatrie has contributed to this area for many years by informing a broad spectrum of interested readers about various developments in gerontology research. Special issues focus on all questions concerning gerontology, biology and basic research of aging, geriatric research, psychology and sociology as well as practical aspects of geriatric care.
Target group: Geriatricians, social gerontologists, geriatric psychologists, geriatric psychiatrists, nurses/caregivers, nurse researchers, biogerontologists in geriatric wards/clinics, gerontological institutes, and institutions of teaching and further or continuing education.