Formal and informal care of people with behavioural and psychological symptoms of dementia: A realist evaluation of research studies in rural Australia

Kaye Ervin

Research output: ThesisDoctoral Thesis

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This thesis by prior publication uses a realist evaluation framework to analyse five research studies of dementia care to better understand what worked, for whom and why, to answer the research question: How are formal and informal carers enabled to manage the behavioural and psychological symptoms of dementia?
Research into dementia care is crucial, with 400,000 people in Australia currently living with dementia, including 200,000 in residential aged care. Because the incidence of dementia increases with age, rural Australia is disproportionately affected when compared to urban areas, due to the growing ageing populations in rural regions. In addition, shortages in the rural health workforce adversely impact on services available to people with dementia and those who care for them.
A key challenge in caring for people with dementia is the prevalence of behavioural and psychological symptoms that frequently cause distress for both formal and informal carers. The 2021 Australian Royal Commission into Aged Care Quality and Safety highlighted failings in dementia care, particularly the significant over-reliance on antipsychotic medications. Despite reports of serious adverse events and the limited effectiveness of antipsychotic medication, the uptake of non-pharmacological approaches is hindered in rural areas by a lack of training and appropriately skilled staff. Non-pharmacological methods of managing neuropsychiatric symptoms of dementia have been shown to be effective, and person-centred care is one of the fundamental therapeutic pillars.
This thesis discusses the biopsychosocial-ecological factors influencing dementia care and presents an integrated body of work comprised of ten publications. The studies were conducted in home care, acute care and residential aged care to capture the diverse experiences of providing care to people with dementia across all of these settings. The strength of the thesis is that exploratory studies preceded the intervention studies to ensure that the implementation of interventions were contextualised to the study participants and the study location for better application and sustainability of the research findings.
The findings presented in the thesis and their immediate application in clinical practice demonstrates evidence of positive outcomes for people with dementia, especially in relation to decreasing inappropriate antipsychotic medication use. Interventions introduced included staff education and training in person-centred approaches to the care of people with dementia. The outcomes of the research are particularly important considering the findings and recommendations of 2021 Australian Royal Commission into Aged Care Quality and Safety.
The real world impact of the research such as improved rural work force skills, as well as the considerable academic impact of the studies is presented. This thesis adds to contemporary knowledge about best practice in dementia care in rural Australia through research demonstrating that formal and informal carers can be enabled to better manage the behavioural and psychological symptoms of dementia. In particular, the research contributes to the body of nursing knowledge by establishing that rural nurses can, and should, support improved models of care for people with dementia.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Charles Sturt University
  • Bell, Karen, Principal Supervisor
  • Bernoth, Maree, Co-Supervisor
  • Cash, Belinda, Co-Supervisor
Award date21 Dec 2022
Place of PublicationAustralia
Publication statusPublished - 06 Jan 2023


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