| Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments. | |
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MedLine Citation:
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PMID: 22211587 Owner: NLM Status: Publisher |
Abstract/OtherAbstract:
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Background Research addressing the experiences of families of adults with Down syndrome and Alzheimer's disease in seeking diagnosis and gaining support is limited. The aim of this study was to gain a greater understanding of these processes by exploring the experiences of families and carers in supporting people with Down syndrome and Alzheimer's disease who had lived most or all of their lives with family. Method Three detailed case studies were created from multiple data sources, and then analysed thematically. Results Families of adults with Down syndrome experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimer's disease. Such overshadowing led to mismanagement by services. Conclusions This research advances understandings of the support needs of people with Down syndrome and Alzheimer's disease and their families. It exposes gaps in the service system. |
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Authors:
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Rachel Carling-Jenkins; Jennifer Torr; Teresa Iacono; Christine Bigby |
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Publication Detail:
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Type: JOURNAL ARTICLE Date: 2012-1-3 |
Journal Detail:
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Title: Journal of intellectual & developmental disability Volume: - ISSN: 1469-9532 ISO Abbreviation: - Publication Date: 2012 Jan |
Date Detail:
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Created Date: 2012-1-3 Completed Date: - Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 9610837 Medline TA: J Intellect Dev Disabil Country: - |
Other Details:
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Languages: ENG Pagination: - Citation Subset: - |
Affiliation:
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Centre for Developmental Disability Health Victoria , Monash University , Australia. |
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From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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