title: Information issues for providers of services to people with dementia living in the community in Australia: breaking the cycle of frustration.
abstract: The rising prevalence of dementia and concomitant demands upon dementia services are global issues. In Australia, dementia has attained national health priority status and governments at all levels have implemented service strategies to help manage the complex lives of people with dementia. Despite recognition that information is pivotal to effective dementia service delivery, little is known about the information needs of individual providers and the processes used to transfer information between providers. This qualitative study scoped information issues for key service providers for people with dementia living in the community in southern Tasmania, Australia, including information needs, availability, and transfer. Eleven focus groups were held with general practitioners, residential aged care facility staff, home carers, community health nurses, and aged care-assessment team members. Findings revealed that provider groups shared common, albeit unbeknown to them, information needs (e.g. diagnosis, behaviours, and services) and information concerns (e.g. untrustworthy information and poor information transfer) leading to poor service coordination. General practitioners emerged as a stand-out group with markedly fewer needs and concerns than other providers, a finding of special interest given their pivotal role in dementia diagnosis and referral. Participants were adamant in their view that electronic data bases and single points of entry to dementia services would improve service provision and should be developed. The research highlights complexities and associated frustrations of information transferability, accessibility, and trustworthiness for dementia service providers in the community. Increased understanding of providers' diverse yet interdependent roles could, we believe, play an important part in breaking the cycle of frustration experienced by all participants and thus contribute to system reform.
authors.affiliation: School of Nursing & Midwifery, University of Tasmania, Hobart, Tasmania, Australia. andrew.robinson@utas.edu.au
authors.forename: Andrew
authors.initials: A
authors.lastname: Robinson
authors.forename: Carolyn
authors.initials: C
authors.lastname: Emden
authors.forename: Emma
authors.initials: E
authors.lastname: Lea
authors.forename: Jean
authors.initials: J
authors.lastname: Elder
authors.forename: Paul
authors.initials: P
authors.lastname: Turner
authors.forename: James
authors.initials: J
authors.lastname: Vickers
mesh_terms: D022126:Access to Information; D001315:Australia / Q000453:epidemiology; D003153:Community Health Services; D003704:Dementia / Q000453:epidemiology*; D017144:Focus Groups; D005639:Frustration; D006801:Humans; D033181:Information Dissemination; D010821:Physicians, Family; D036301:Qualitative Research; D012111:Residence Characteristics; D013648:Tasmania / Q000453:epidemiology