NotesFAQContact Us
Search Tips
Peer reviewed Peer reviewed
Direct linkDirect link
ERIC Number: EJ964532
Record Type: Journal
Publication Date: 2012-Mar
Pages: 7
Abstractor: As Provided
Reference Count: 18
ISSN: ISSN-1366-8250
Experiences of Supporting People with Down Syndrome and Alzheimer's Disease in Aged Care and Family Environments
Carling-Jenkins, Rachel; Torr, Jennifer; Iacono, Teresa; Bigby, Christine
Journal of Intellectual & Developmental Disability, v37 n1 p54-60 Mar 2012
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. (Contains 2 tables.)
Informa Healthcare. Telephone House, 69-77 Paul Street, London, EC2A 4LQ, UK. Tel: 800-354-1420; e-mail:; Web site:
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Australia