Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments.
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.


METHODS
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.
Centre for Developmental Disability Health Victoria, Monash University, 270 Ferntree Gully Road, Notting Hill, Vic. 3168, Australia. rachel.carling-jenkins@monash.edu
Rachel
R
Carling-Jenkins
Jennifer
J
Torr
Teresa
T
Iacono
Christine
C
Bigby
D000544:Alzheimer Disease / Q000150:complications / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D004314:Down Syndrome / Q000150:complications / Q000451:nursing*; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology