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Dementia
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Information pathways into dementia care services

Family carers have their say

Andrew Robinson

University of Tasmania, Australia, Andrew.Robinson{at}utas.edu.au

Jean Elder

University of Tasmania, Australia, jean.elder{at}utas.edu.au

Carolyn Emden

University of Tasmania, Australia, carolyn.emden{at}utas.edu.au

Emma Lea

University of Tasmania, Australia, emma.lea{at}utas.edu.au

Paul Turner

University of Tasmania, Australia, james.vickers{at}utas.edu.au

James Vickers

University of Tasmania, Australia, paul.turner{at}utas.edu.au

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.

Key Words: dementia • family carers • information

Dementia, Vol. 8, No. 1, 17-37 (2009)
DOI: 10.1177/1471301208099051
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