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Service Pathways For Ageing Caregivers Of Adults With Intellectual Disability
Funder
National Health and Medical Research Council
Funding Amount
$143,613.00
Summary
Caregiving is demanding, but for most it is but a phase of life. This is not so for the 90,000 Australian parents caring for a lifetime for their adult son or daughter with intellectual disability. They are at significant risk from the physical and emotional consequences of long-term caring and the compounding effects of their own - and their son or daughter's - ageing. Despite this, these ageing parent caregivers typically do not use health and community services until a crisis occurs. Our goal ....Caregiving is demanding, but for most it is but a phase of life. This is not so for the 90,000 Australian parents caring for a lifetime for their adult son or daughter with intellectual disability. They are at significant risk from the physical and emotional consequences of long-term caring and the compounding effects of their own - and their son or daughter's - ageing. Despite this, these ageing parent caregivers typically do not use health and community services until a crisis occurs. Our goal is to ensure that ageing parent caregivers use health and community services appropriately and for these services to be appropriate to their needs. The proposed project therefore aims to identify the pathways that lead to or prevent ageing parent caregivers accessing services and to construct a model for ageing parent caregivers' involvement with services that could be tested with a randomised clinical trial. Narrative life history method will be used to determine how ageing parent caregivers arrived in their present circumstances and factors which influence the caring relationship, its stresses and rewards, and their experiences and views concerning services. Service providers will participate in focus groups to examine their perceptions and expectations of services for ageing parent caregivers. Characteristics of the study sample will be compared with state and national population benchmarks. The findings will inform our planned development of a multi-dimensional strategy to provide cost effective preventive health and community services for this largely neglected subgroup within the population of caregivers in Australia.Read moreRead less
Improving Decision Making On Health Interventions: Factoring In The Long Term Economic Impacts Of Informal (unpaid) Care
Funder
National Health and Medical Research Council
Funding Amount
$628,963.00
Summary
This project looks at the future health of the Australian population that will keep more informal carers out of employment and diminish their own livings standards, thereby reducing funds available to government and the impact of interventions that could improve the health of the population and increase employment of carers.
Understanding The Experience Of Making Decisions For Persons With Dementia And Their Carers
Funder
National Health and Medical Research Council
Funding Amount
$71,110.00
Summary
This project aims to explore concepts of value, meaning, and experience of the diagnosis amongst sufferers of dementia through discussion of their approach to making care decisions, and reflection on how this dialogue has been conducted with others. These concepts will be assessed from the perspective of diagnosed sufferers, their primary carers and their diagnosing doctors.
Younger-onset Dementia: Improving Patient And Care Outcomes Through Advancements In Diagnosis And The Identificaiton Of Genetic And Environmental Factors Which Influence Outcomes.
Funder
National Health and Medical Research Council
Funding Amount
$227,261.00
Summary
This project aims to fully characterise symptoms of YOD and correlate these with existing and novel investigations. Carers' needs,including their psychiatric symptoms and burden will also be studied. Guidelines can be developed to assist primary care and other services to improve their ability to recognise early symptoms so they can refer patients for appropriate assessment in a timely manner, thus reducing diagnostic delay and ultimately benefiting patients and carers
The Role Of Allostatic Load As A Mediator Between Chronic Stress And Poor Health For Dementia Caregivers
Funder
National Health and Medical Research Council
Funding Amount
$237,321.00
Summary
The potential risk to caregivers of dementia patients of poor health outcomes is well documented. The burden imposed by caregiving is most often described in terms of chronic stress. While it is apparent that some stress-relieving social interventions (e.g. respite) may have short-term benefits, it is also clear that many caregivers are unable or unwilling to avail themselves of such programs. The way in which chronic stress leads to poor health is not well understood. Our study of spouse caregi ....The potential risk to caregivers of dementia patients of poor health outcomes is well documented. The burden imposed by caregiving is most often described in terms of chronic stress. While it is apparent that some stress-relieving social interventions (e.g. respite) may have short-term benefits, it is also clear that many caregivers are unable or unwilling to avail themselves of such programs. The way in which chronic stress leads to poor health is not well understood. Our study of spouse caregivers seeks to identify the groups of physiological systems that suffer cumulative wear and tear as a result of chronic stress. This wear and tear is called allostatic load, and is thought to lead to poor health. It is expected that caregivers in our study will have greater allostatic load than people who are not caregivers. Should this be the case, our results will provide the basis for the design of tailored interventions to maintain caregivers in good health. The potential of such preventive health measures is to reduce caregivers' health care costs and reliance on community support, and to help caregivers to continue providing care for their spouses at home.Read moreRead less
Helping Family Caregivers Of Palliative Care Patients Manage Their Roles: Evaluation Of A Hospital Based Group Education
Funder
National Health and Medical Research Council
Funding Amount
$219,810.00
Summary
While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while support ....While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while supporting their dying relative. Caregivers have expressed a desire for structured information to better prepare them for their role, whether their dying relative is in hospital, a palliative care unit or at home. The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an inpatient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient�s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their caregiving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves. Each education program will involve approximately six family caregivers; it will be conducted very soon after their relative has been admitted to the palliative care unit. The program will be of two hours duration (including time for data collection) and will be facilitated by a suitably qualified health professional. Written resources will be provided and caregivers will be given the opportunity to meet with staff from the multidisciplinary team. Referrals for scheduled consultations will be made where relevant. The program will be conducted in three sites (two in Victoria and one in Western Australia) and will be comprehensively evaluated. The caregivers who attend the program will be invited to provide feedback by completing several questionnaires designed to determine the effectiveness of the program. Group education programs of this kind have previously not been rigorously developed and tested. We seek to address this and hope to demonstrate that we can positively influence the family care giving experience.Read moreRead less
Do Personal Factors And Attitudes In Older Carers Act As Moderating Factors And Limit The Utility Of Physical Activity As A Public Health Intervention?
Funder
National Health and Medical Research Council
Funding Amount
$102,063.00
Summary
The ageing population is expected to greatly accelerate the community burden of care for those with dementia and other age related illnesses. Recent data showed that there were 2.6 million carers in Australia, including 520 000 who are aged over 60 years old. Carer burden is a huge social and economic problem. This study will investigate the personal factors which make carers at higher risk of preventable poor physical and mental health, as well as how these factors may impact on intervention ou ....The ageing population is expected to greatly accelerate the community burden of care for those with dementia and other age related illnesses. Recent data showed that there were 2.6 million carers in Australia, including 520 000 who are aged over 60 years old. Carer burden is a huge social and economic problem. This study will investigate the personal factors which make carers at higher risk of preventable poor physical and mental health, as well as how these factors may impact on intervention outcomes.Read moreRead less
Optimising Functional Independence Of Older Persons With Dementia: Implementation And Evaluation Of The Interdisciplinary Home-bAsed Reablement Program (I-HARP)
Funder
National Health and Medical Research Council
Funding Amount
$1,864,345.00
Summary
We propose to trial a practical, evidence based model, called the Interdisciplinary Home-bAsed Reablement Program, I-HARP, designed to improve functional independence of community dwelling older people with dementia. I-HARP will be implemented and evaluated, for its effectiveness and implementation outcomes in two different settings of hospital and community aged care. Ultimately, the program will help them live well and stay at home, while delaying entry into higher home or residential care.
A Randomised Controlled Trial Of The Cost-effectiveness Of Supportive Care Coordination For Advanced Cancer
Funder
National Health and Medical Research Council
Funding Amount
$147,269.00
Summary
The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against usual care: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients' and their informal caregivers' health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physical ....The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against usual care: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients' and their informal caregivers' health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physical disability or age.Read moreRead less