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Carers and Consumers
Current Projects
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Queensland University of Technology |
| Project Number | CC-QUT-01/07 |
| Project title | The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review |
| Principal Researcher | Ms Sonia Hines |
| Other Researchers | Judy McCrow, Jenny Abbey, Jennecke Foottit, Jacinta Wilson, Patricia Shuter.
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| Description | This review will investigate whether the palliative approach is an appropriate and effective model of care for people with advanced dementia and their families. |
| Anticipated Completion | Systematic review - 30 June 2009 |
| Products | Protocol - Palliative care approach for persons with dementia in residential care
Palliative Care in Dementia Systematic Review TBA |
| Contact | For more information contact Ms Sonia Hines |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Queensland University of Technology |
| Project Number | CC-QUT 02/07 |
| Project title | Understanding dementia in urban, rural and remote Aboriginal and Torres Strait Islander communities in Queensland. |
| Researchers | Ms Gail Garvey, Professor Elizabeth Beattie, Ms Beryl Meiklejohn, Ms Venessa Curnow, Assoc Professor Don Gorman, Mr Peter O’Rourke, Ms Susi Wise |
| Description | This project is being conducted in conjunction with the Queensland Institute of Medical Research (QIMR), QUT’s Faculty of Health, Rural and Remote Health (USQ) and Alzheimer’s Australia’s Indigenous Dementia Program. This project aims to explore the meanings of dementia and associated conditions from Indigenous perspectives; determine levels of knowledge and understanding regarding identification of dementia in Indigenous communities; identify and investigate current support and services available to Indigenous people living with dementia and their families and carers; and explore the pathways of diagnosis, services, programs and support for indigenous people with dementia. |
| Anticipated Completion | 01 December 2009 |
| Products | TBA |
| Contact | For more information, please contact Ms Gail Garvey: Gail.Garvey@qimr.edu.au |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Queensland University of Technology |
| Project Number | CC-QUT-01/08 |
| Project title | Oral liquid nutritional supplements (OLNS) for people with dementia in residential aged care facilities: A systematic review |
| Principal Researcher | Sonia Hines |
| Other Researchers | Jenny Abbey, Jacinda Wilson, Judy McCrow, Sandy Sacre |
| Description | This project grew from an identified need in the HCG 06/07 project "Investigation of the use of energy supplements for people with dementia in Residential Aged Care Facilities" for a Systematic Review to methodically analyse the current practices around administering OLNS. The review:1) identifies the factors associated with the prescription and administration of OLNS; 2) assesses the effectiveness of administering oral liquid nutritional supplements; 3) identifies resident responses to the administration of OLNS; and 4) identifies how staff view and manage the administration of OLNS. |
| Anticipated Completion | Completed |
| Products | Systematic Review published on JBI website |
| Contact | For more information contact Ms Sonia Hines |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Queensland University of Technology |
| Project Number | CC-QUT-02/08 |
| Project title | Thickened Fluids for people with dementia in residential aged care facilities; A systematic review |
| Principal Researcher | Ms Sonia Hines |
| Other Researchers | Judy McCrow, Jenny Abbey, Jacinda Wilson, Sandy Sacre |
| Description | This project grew from an identified need in the HCG 06/07 project, “Investigation of the use of energy supplements for people with dementia in Residential Aged Care Facilities”, for a Systematic Review to methodically analyse the current practices around administering Thickened Fluids. The review: 1) to establishes factors associated with the prescription and administration of thickened fluids for this population; 2) assesses the effectiveness of administering thickened fluids for this population in terms of adequate hydration, mortality, morbidity and patient comfort; 3) explores the attitudes of people with dementia in RACFs and their family/carers regarding the administration of thickened fluids; 4) explores the attitudes of staff regarding the administration of thickened fluids for people with dementia in RACFs. |
| Anticipated Completion | Completed |
| Products | Systematic Review published on JBI website |
| Contact | For more information contact Ms Sonia Hines |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Curtin University of Technology |
| Project Number | CC-CUT-02/07 |
| Project title | Use of medical, home-based and residential aged care by older decedents with dementia during the last three years of life |
| Principal Researcher | Professor Barbara Horner |
| Other Researchers | Dr Janine Calver |
| Description | Dementia is associated with substantial health and social care costs, both as a result of dementia-associated morbidity and the higher burden of comorbidity often found in affected people. Although there have been several European and US cost-of-dementia studies, predominantly focussing on Alzheimer’s disease, reliable cost estimates are unavailable and the comparability between estimates is limited due to differences in data sources, disease severity, the cost and sampling methodologies used, and the services included. The indirect costs of dementia are less well understood, owing to theoretical and practical difficulties in their measurement and valuation, as summarised by McDaid. Irrespective of cross-national differences and wide variations in estimates, most studies agree that unpaid caregiver time accounts for a substantial proportion of total dementia costs, primarily because it offsets the costs of long-term care. Indirect costs accounted for over one third (US$92bn or AU$120bn) of worldwide dementia costs in 2003. In Australia, indirect costs for 2002 were estimated at AU$2.2bn, which included carer costs at replacement value (AU$1.7bn), lost earnings (AU$364m), and the cost of aids and home modifications (AU$120m). Quite apart from the financial impact on informal caregivers, dementia can impose considerable lifestyle changes, loss of freedom, and emotional and physical burdens, which increases as the level of cognitive impairment worsens. |
| Anticipated Completion | 30 June 2009 |
| Products |  |
| Contact | For more information contact Professor Barbara Horner |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Curtin University of Technology |
| Project Number | CC-CUT-04/07 |
| Project title | Older people who receive enteral nutrition via gastrostomy tubes: a population-based study of incidence, indications and outcomes |
| Principal Researcher | Professor Barbara Horner |
| Other Researchers | Dr Janine Calver |
| Description | This study provides population-based estimates of the incidence, indications and outcomes (survival and rehospitalisation) of all older Western Australians who had a feeding tube inserted over a 10-year period. This study revealed that over half of the GT cohort had died within one year of the GT placement and three-quarters, within three years. Further, overall survival outcomes for people 85 years and over were worse when compared with people aged 65-74 years. Mortality rates varied among the six common indicator conditions, confirming international results. They were not significantly different for people with dementia at the time of GT placement. The high mortality rate after PEG placement is influenced by the poor prognosis of the individual’s underlying condition. There is no evidence in this study to suggest that people with dementia fair worse than other recipients. |
| Anticipated Completion | Completed |
| Products | Interim Report - Older people who receive enteral nutrition via gastrostomy tubes
An article has been accepted by the Medical Journal of Australia for publication - a link will be provided here when it becomes available. |
| Contact | For more information contact Professor Barbara Horner |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Curtin University of Technology |
| Project Number | CC-CUT01/08 |
| Project title | The impact of stigma on a diagnosis and treatment of dementia |
| Principal Researcher | Dr Simon Colquhoun |
| Other Researchers | Associate Professor Barbara Horner, Professor Wendy Moyle, Professor Elizabeth Beattie |
| Description | This qualitative pilot study will investigate through interview, the impact of stigma on a delay in diagnosis and treatment of dementia as perceived by people with dementia and their partners/family and general practitioners. |
| Anticipated Completion | November 2009 |
| Products | |
| Contact | Dr Simon Colquhoun |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | The Hammond Care Group |
| Project Number | CSR-HCG-03/07 |
| Project title | Review of current research activities in aged care services and the identification of priorities for support with completion and dissemination of results |
| Principal Researcher | Richard Fleming |
| Other Researchers | Professor Jenny Abbey |
| Description | The project will result in a clear picture of the research activities being carried out in aged care services. Research will be defined broadly to include evaluation of interventions/projects and QA activities that utilise a systematic approach to data collection. The review will identify the major areas of interest of aged care providers, facilitate a comparison with academic research and will assist academic researchers to target the areas of real concern to practitioners. |
| Anticipated Completion | 30 June 2009 |
| Products | |
| Contact | Mr Richard Fleming |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Hammond Care Group |
| Project Number | CC-HCG-06/07 |
| Project title | Investigation of the use of thickened fluids and/or energy supplements for people with dementia in Residential Aged Care Facilities (RACFs) |
| Principal Researcher | Ms Michele Prior, Professor Jenny Abbey, Richard Fleming |
| Other Researchers | Dr Sandy Sacre, Jacinda Wilson, Susan Gledhill, Susi Wise |
| Description | This study investigated the use of thickened fluids and/or energy supplements for people for dementia in RACFs. Retrospective chart audits were conducted at seven RACFs in New South Wales (NSW) and the Australian Capital Territory (ACT). In addition, focus groups were held with staff in each of the facilities to determine staff perceptions in relation to the administration of Thickened Fluids and Oral Liquid Nutrtional Supplements. The overall findings from the study reveal inconsistencies in relation to the prescription and administration of Thickened Fluids and Oral Liquid Nutrtional Supplements in RACFs. This study also included two systematic reviews for existing evidence on the effectiveness of both energy supplements and thickened fluids for residents with dementia. These reviews are discussed as projects CC-QUT 01/08 and CC-QUT 02/08. |
| Anticipated Completion | Systematic reviews & Qualitative Data Report - Complete |
| Products | Use of Thickened Fluids Report
Oral Liquid Nutritional Supplements Report |
| Contact | For more information contact Mr Richard Flemming |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Queensland University of Technology & Hammond Care Group |
| Project Number | HCG-QUT-05/08 |
| Project title | Respite Care in Dementia: Consumer and Provider Perspectives |
| Principal Researcher | Professor Elizabeth Beattie |
| Other Researchers | Mr Richard Hammond, Mr Ron Sinclair, Ms Meredith Gresham. |
| Description | Respite is a key service to assist people living with dementia to remain living at home. Despite this there are varying levels of satisfaction with, and utilization of, respite reported by consumers and service providers. This study will investigate the perceptions of both consumers and service providers around use or non-use of respite, outcomes of respite for both carers and the person with dementia and these consumers’ overall experience of current respite offerings. |
| Anticipated Completion | December 2009 |
| Products | |
| Contact | Professor Elizabeth Beattie |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Griffith University |
| Project Number | CC-GU-05/07 |
| Project title | Loneliness: The influence of activity and social engagement on loneliness and Quality of Life on people with dementia and their carers |
| Principal Researcher | Professor Wendy Moyle |
| Other Researchers | Professor Julianne Cheek
Dr Ursula Kellett
Ms Alison Ballantyne |
| Description | This research aims to provide a comprehensive picture of the issues/factors related to loneliness in people with dementia and their carers. Specific factors that will be explored include activity, social engagement and quality of life. A better understanding of these factors will help us to assist people living with dementia and their carers to manage loneliness as a means of improving quality of life. |
| Anticipated Completion | 31 December 2009 |
| Products | Systematic Review (TBA)
Guidelines for Practice (TBA) |
| Contact | For more information contact Professor Wendy Moyle |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | La Trobe University |
| Project Number | CC-LTU-07/07 |
| Project title | Clinical Practice Improvement in Acute Care Settings – Pain Priority |
| Principal Researcher | Associate Professor Susan Koch |
| Other Researchers | Ms Deirdre Fetherstonhaugh
Ms Margaret Winbolt
Ms Linda McAuliffe (Contact)
Ms Megan O’Donnell |
| Description | This project extends the Australian Centre for Evidence Based Aged Care (ACEBAC) current Clinical Practice Improvement project into the acute care setting. The project aims to improve the frequency and accuracy of pain assessment in older people with dementia, in hospital environments. The project comprises four stages – the first identifies the best methods of pain assessment (this has already been completed), the second audits current practice, the third implements the methods described in phase one and finally the effectiveness of the model is assessed. |
| Anticipated Completion | 2 November 2009 |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | La Trobe University |
| Project Number | CSR-LTU-08/07 |
| Project title | Development of a method of assessing the implementation of Person Centred Care in the management of pain in all care settings |
| Principal Researcher | Professor Rhonda Nay |
| Other Researchers | Dr David Edvardsson
Ms Deirdre Fetherstonhaugh
Ms Margaret Winbolt
Ms Linda McAuliffe (Contact) |
| Description | This project aims to develop an assessment tool for the level to which person centred care is integral to a facility (from management to ward level), this tool will then be used to assess the impacts of person centred care on the pain identification, assessment and management process in older people with dementia. It is hypothesised that care which is more involving of the person helps them manage pain, be more stimulated and distracted from pain, encourages nursing care to investigate treatment options and promotes more in-depth assessment of pain (beyond initial identification of pain). |
| Anticipated Completion | 2 November 2009 |
| Centre | Collaborative Centre for Carers and Consumers |
| Node | Alzheimer’s Australia |
| Project Number | |
| Project title | Joint Alzheimer’s Australia Research (AAR) and DCRC-CCSR PhD Project
Predictors of complicated grief and health outcomes in family caregivers of people with dementia. |
| Principal Researcher | Patricia Shuter |
| Other Researchers | Professor Helen Edwards, Professor Elizabeth Beattie & Dr Sandy Sacre |
| Description | The primary aim of this research project is to determine whether the occurrence of complicated grief is significantly related to health outcomes of family caregivers of people with severe dementia. A secondary aim is to determine whether a palliative approach to care as well as other protective factors, have the capacity to improve health for these caregivers following the death of their relative. Focus on these issues presents the opportunity for research that identifies appropriate and effective early interventions to avoid complicated grief in this group. |
| Anticipated Completion | March 2010 |
| Products | PhD Thesis |
| Contact | For more information, please contact Ms Patricia Shuter : p.shuter@qut.edu.au |
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| Centre | Collaborative Centre for Carers and Consumers |
| Node | Alzheimer’s Australia |
| Project Number | |
| Project title | Joint Alzheimer’s Australia Research (AAR) and DCRC-CCSR PhD Project
Dementia with Lewy Bodies: Evaluating carers' experiences. |
| Principal Researcher | Kathryn Nicholson |
| Other Researchers | Dr Pamela St Leger & Professor David Ames |
| Description | Dementia with Lewy bodies (DLB) is a disease that is not well recognised although it is now thought to be the second most common form of dementia. It differs from Alzheimer’s disease in that short term memory is often preserved in the early stages of the disease. DLB can also be mistaken for Parkinson’s disease. The psycho-social aspects of DLB have not been studied in depth however it is thought that caring for people with this disease presents unique challenges. This project will explore DLB from carers’ perspectives to understand their experiences, ascertain their needs and identify gaps in service provision. It has important implications for raising the profile of DLB. |
| Anticipated Completion | March 2010 |
| Products | PhD Thesis |
| Contact | For more information please contact Kathryn Nicholson |
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