University of Tasmania, Australia

1. Brief Background to the Project:

The Schools of Medicine (CI Prof James Vickers), Nursing and Midwifery (C.I Assoc Prof Andrew Robinson) and Information Systems (CI Assoc Prof Paul Turner) UTas, were funded to undertake this project which aimed to:

1. Scope the information available to people involved in the care of people with dementia in Southern Tasmania
2. Conduct an information audit on the variety of health care services and settings (HACC, GPs, Residential care, ACAT etc) as they relate to the management of people with dementia and
3. Undertake an intervention to assist the development of an IT approach to determining the trajectory of care for people with dementia at key transition points.

2. Research Findings – Stages 1 and 2

This research involved the conduct of an information audit on the variety of health care services and settings (e.g HACC, GPs, residential care) as they relate to the management of people with dementia. The audit involved recording both the content and form; storage; and usage made, of dementia information collected by 22 agencies representing a broad spectrum of health care settings providing services to people with dementia.

In addition, 14 focus groups (involving >100 participants) were held in late 2006 with a range of service providers (11 groups) and family carers (3 groups, n=17) to explore the information available to them at different stages in the dementia care trajectory. Service providers included: GPs (n=7), community nurses (n=20), Home and Community Care staff (n=23), aged care nurses (n=13), RACF Directors of Nursing (n=5) and ACAT (n=16).

A wealth of valuable data was obtained from these discussions which were taped and later transcribed and analysed by three researchers using a rigorous thematic approach. Analysis of the data revealed information gaps, barriers to information access and duplication of effort in information gathering. These factors, in combination act as barriers to information access across the trajectory of care . This compromises the capacity of service providers to deliver appropriate, informed and responsive care for people with dementia. It also impacts on the caregivers' capacity to cope and engage with the 'maze' of service agencies.

Three journal publications reporting on the information audit and this more detailed analysis of the focus group data, are now near completion.

The first formal report on the project will be given at the 2007 Alzheimer's Australia national conference in late May. This paper will report on data from the focus groups with family carer's of people with dementia. It is titled – "Carer's need to know- a preliminary study of information needs of unpaid carers of people with dementia over the duration of their caring role"

3. Stage 3

The third stage of the project involves the construction of a pilot IT tool which will assist the information transfer between key service providers as well as providing an information access point for carers of PWD. It is envisaged this work will be completed late in 2007/early 2008