Dementia is one of the fastest growing sources of major disease burden in Australia and will overtake coronary heart disease in its total wellbeing cost by 2023. Without a significant medical breakthrough, the prevalence of dementia is estimated to increase from around 257,000 people in 2010 to about one million in 2050.
Dementia is a term that encompasses a range of conditions characterised by impairment of brain functions including language, memory, perception, personality and cognitive skills. Dementia is a fatal condition and there is currently no cure.
This distressing disease is presenting a significant challenge to the nation’s health system, and needs to be tackled on many research and clinical fronts. One of these is the support and training provided to residential aged care facility (RACF) staff.
In 2010 it is estimated there are approximately 82,000 residents in these facilities across the country who suffer from dementia. Due to the characteristics of the disease, caring for people with dementia is particularly demanding. To better cope with future demands, there is a clear need to support care providers and staff in RACFs through the development of sustainable models of care.
One area that clinicians and the research literature suggest needs addressing in dementia is the recognition of, and approach towards, end-of-life care. In many cases, staff in aged care facilities do not feel empowered or confident to initiate a change in the direction of care towards a palliative approach.
From research to date, it is evident that funding additional staff members for each of the many facilities may help provide the human resources needed to tackle the issue, but that is neither sustainable financially nor in terms of staff recruitment.
Rather, the ability of existing staff within aged care facilities to recognise the end-of-life stage, and to make appropriate, shared decisions about taking a palliative care approach, needs to be enhanced. This has been recognised via a $600,000 grant to the Illawarra Health and Medical Research Institute to deliver the REACH Out In Dementia Project.
The purpose of this project is to implement, and assess the impact of, an evidence-based best practice palliative approach in providing care to late stage dementia residents in aged care facilities. It will educate care providers, staff and families of residents about the clinical features which might predict an opportunity to move in the direction of palliative care.
There is already an abundance of evidence of the quality of life benefits that taking a ‘comfort’ palliative care approach can bring at end of life stage. On the other hand, there is also evidence of many barriers to providing this approach.
A major factor leading to avoidance of the necessary end-of-life conversations with residents and families in aged care facilities may be that health care providers feel unskilled at this task. They are unlikely to initiate end-of-life discussions when they believe they lack the needed interpersonal skills.
Although this type of conversation would help identify the resident’s wishes about their ongoing care, education alone may be insufficient to fully empower doctors and care providers to initiate the needed changes.
Addressing the barriers to initiating end of life conversations is where the REACH project stands out from previous work, and is leading in this area of research.
While the project aims to ensure a more appropriate approach for residents with late stage dementia, what are the implications for reducing the burden on an already overstretched health care system?
Currently, many residents with end stage dementia frequently end up in the Emergency Department. This could be a result of staffing shortages within these facilities or other reasons, none the less the ‘casualty ward’ is clearly not the ideal place for end-of-life symptom management.
With an improved model for end of life care delivered in the residential aged care facility by professional care staff and GPs, the number of dementia patients presenting at emergency could be reduced significantly and residents can spend their final days in their own home.
For these reasons, the experience of professional care staff and GPs will be pivotal to the program that is implemented and the collaboration between researchers and clinicians in the REACH Out In Dementia project. This focus on end stage dementia is what sets the project apart from others underway in the delivery of dementia care.
There has been plenty of enthusiasm from both RACFs and GPs in the local area to participate in the project and to embrace new models of care. This will include psychological education and workshops to improve their interpersonal and confidence skills when communicating with residents who have dementia and their families.
The project will take a collaborative approach involving REACH nurses working with RACF staff, visiting clinicians, and residents and families at 12 aged care facilities in the Illawarra and Shoalhaven over the next nine months. It will also trial the provision of a local guideline called the REACH Toolkit to empower them to care holistically within the facility.
Designed with a range of features and training resources to ensure acceptable and sustainable change within the participating aged care facilities, it is also critical that the program developed is transferable to other facilities in the region and across the country.
With so many people and their families living with dementia now and into the future, we hope this project will make a positive and significant impact on their lives. This will come through a more consistent and open approach to discussing and recording the person’s, and their family’s, desires for ongoing care as the person approaches the end of life.
Making a difference will require the experience and willingness of RACF staff and GPs to recognise the need for a new model, and to participate and support its implementation. Already, the collaboration has been fruitful.
Finally, the literature on geriatric care will be enhanced with the reporting of results from the project implementation and evaluation. We hope the REACH Out In Dementia project will impact and improve the care of our elderly across the nation for many years into the future.
*Dr Nancy Humpel is the Project Manager of the REACH Out In Dementia Project (Recognise End-of-life And Care Holistically in Dementia) based at the Illawarra Health and Medical Research Institute. Her PhD was in health behaviour change and she has extensive experience in the management of clinical trials and other cancer and health related projects. The REACH Out In Dementia Project is funded by a grant from the Commonwealth Department of Health and Ageing.