Journal Article

DZNE-2025-00917

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Alzheimer-Demenz bei Menschen mit einem Down-Syndrom : Ergebnisse leitfadengestützter Expert:inneninterviews zu Versorgungsdefiziten in Diagnostik und Therapie sowie Lösungsansätzen | 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

Hüer, T. ; Weitzel, M. ; Giebel, G. D. ; Raszke, P. ; Wasem, J. ; Levin, J.DZNE* ; Nübling, G.DZNE* ; Wagemann, O.DZNE* ; Wlasich, E. ; Pantel, J. ; Tesky, V. ; Schall, A. ; Walendzik, A.

2025
Springer Medizin Heidelberg

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Please use a persistent id in citations: doi:10.1007/s00391-024-02371-8

Abstract: 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.In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis.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.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.

Keyword(s): Humans (MeSH) ; Alzheimer Disease: diagnosis (MeSH) ; Alzheimer Disease: therapy (MeSH) ; Alzheimer Disease: epidemiology (MeSH) ; Down Syndrome: diagnosis (MeSH) ; Down Syndrome: therapy (MeSH) ; Down Syndrome: epidemiology (MeSH) ; Germany: epidemiology (MeSH) ; Male (MeSH) ; Female (MeSH) ; Practice Guidelines as Topic (MeSH) ; Aged (MeSH) ; Guideline Adherence: statistics & numerical data (MeSH) ; Middle Aged (MeSH) ; Comorbidity (MeSH) ; Interview study ; Medical care ; Medical care deficits ; Solution approaches ; Trisomy 21

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Contributing Institute(s):

1. Clinical Research (Munich) (Clinical Research (Munich))
2. Clinical Neurodegeneration (AG Levin)

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Appears in the scientific report 2025

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Database coverage:
; ; ; BIOSIS Previews ; Biological Abstracts ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; Current Contents - Social and Behavioral Sciences ; DEAL Springer ; Essential Science Indicators ; IF < 5 ; JCR ; Nationallizenz ; SCOPUS ; Science Citation Index Expanded ; Social Sciences Citation Index ; Web of Science Core Collection

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