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Information pathways into dementia care services. Families have their say


Robinson, AL and Elder, JA and Emden, CG and Lea, EJ and Turner, P and Vickers, JC, Information pathways into dementia care services. Families have their say, Dementia, 8, (1) pp. 17-37. ISSN 1471-3012 (2009) [Refereed Article]

DOI: doi:10.1177/1471301208099051


This research described family carers' experiences in accessing dementia information and services in Southern Tasmania, Australia. Focus groups were conducted around three topics: (i) information available to family carers prior to a formal diagnosis of dementia, (ii) sources of information following diagnosis, and (iii) means of transfer of information. Data analysis identified themes reflecting participants' progressive care experiences: from hurtful and dismissive attitudes towards initial requests for information and early diagnosis, to futile searching for information within a seemingly disorganized healthcare system, to eventual resolution of a kind whereby dementia services were finally procured for family members to varying degrees - all of which created emotional turmoil and delayed receipt of services. This study strongly emphasises the value of health professionals seriously and empathically hearing and acting upon family carers' requests for information and prompt diagnosis of dementia. In addition, there is a significant need to improve access and organization of information and services for people with dementia and their family carers. © 2009 SAGE Publications.

Item Details

Item Type:Refereed Article
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Health and community services
Objective Division:Health
Objective Group:Specific population health (excl. Indigenous health)
Objective Field:Health related to ageing
UTAS Author:Robinson, AL (Professor Andrew Robinson)
UTAS Author:Elder, JA (Ms Jean Elder)
UTAS Author:Emden, CG (Dr Carolyn Emden)
UTAS Author:Lea, EJ (Dr Emma Lea)
UTAS Author:Turner, P (Associate Professor Paul Turner)
UTAS Author:Vickers, JC (Professor James Vickers)
ID Code:62537
Year Published:2009
Deposited By:Health Sciences B
Deposited On:2010-03-12
Last Modified:2010-06-25

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