Dementia epidemic needs $500 million war chest

Whilst patient-centred care is the popular phrase to describe the best practices for caring for people living with dementia, delivering this ideal may be beyond our providers, regulators and governments because of cultural, societal, political and economic barriers, not the least of which is a requirement for $500 million in extra funding.

Alzheimer’s Australia, the peak body for people living with dementia, estimates that more than 280,000 Australians have dementia. It predicts that number will increase to approximately 400,000 within 10 years. With the 3rd National Dementia Congress commencing in Melbourne on February 23, Alzheimer’s Australia CEO Glenn Rees discusses the condition and the many challenges Australia has in providing an adequate response.

Rees says by 2020, 75,000 baby boomers will have dementia and that the dementia epidemic is not coming, it’s already here. However, when asked to qualify these claims, he acknowledges a scarcity of accurate Australian data. “There are no Australian epidemiology studies that assist in analysis of whether the incidence of dementia is growing or is stable in Australia,” he says. “All our statistics are based on overseas studies. On the basis of these, it has been estimated by Access Economics that in 2012 there will be 1,600 new cases of dementia every week, and that by 2050 there will be 7,400 each week.”

The shortage of such studies is reflective of the low status dementia has historically had on the healthcare agenda, particularly when compared to the established priority conditions such as cancer and heart problems. He admits that dementia’s less significant status is indicative of enduring community attitudes about the condition and the reality is that celebrity, sponsorships and funding have gone to diseases with better marketing machines. He says many Australians would be surprised to know that dementia is fatal, as yet, has no cure, and is the leading cause of death in Australia after heart disease and stroke (see breakout on dementia’s Facts and Stats). He says the disease impacts on almost 1.5 million Australians directly or indirectly (Pfizer Health Report Issue #45 – Dementia, March 2011), and everyone has their own unique and often traumatic story to tell.

“Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s mental functioning,” he says. “It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning. Alzheimer’s disease is the most common form of dementia, accounting for between 50 – 70 per cent of all dementia cases. “Dementia can happen to anybody, but it is more common after the age of 65. However, people in their 40s and 50s can also have dementia.

“Too many Australians do not understand that dementia is a chronic disease and not a natural consequence of old age. Australia can beat dementia if we tackle it the same way as we have tackled heart disease and cancer. “Alzheimer’s Australia is the charity for people with dementia and their families and carers. As the peak body, it provides advocacy, support services, education and information and we offer a National Dementia Helpline: 1800 100 500 and a website at www.fightdementia.org.au,” Rees says.

The peak body recognises stigma and community ignorance must be overcome if gains are going to be made in securing research funding, developing better methods of care, reducing discrimination, and ultimately saving lives. Achieving this will also reduce the weighty burden dementia places on health and aged care budgets and systems.

Rees is forthright about Alzheimer’s Australia integrating the above into its overall mission of advocacy, care, support and education. Its Fight Dementia Action Plan (www.fightdementia.org.au) outlines a strategy that calls on the Government to make substantial investments in clear and decisive actions. All up, Alzheimer’s Australia is petitioning the Government to invest almost $500 million in responding to the dementia epidemic. This is less than two per cent of current expenditure on dementia. “Dementia costs the health system about $6 billion per annum and will become the third greatest source of health and residential aged care expenditure within 20 years. (The Dementia Epidemic: Economic Impact and Positive Solutions for Australia, Access Economics 2003)

“Dementia will affect everybody’s lives in one way or another. There will be nearly one million people with dementia by 2050 – the equivalent of a city three times the size of Canberra. That is the world we will face in 2050. We need the Government to restore dementia as a health priority now and to invest in action to combat the dementia epidemic.

 “We call on the Government to fund a two-year, $15 million information campaign to tackle community ignorance of dementia. There needs to be investment in reducing the time between the first signs of memory loss to diagnosis, so we call on the Government to invest $53 million over five years to address barriers to timely diagnosis by employing specialist dementia nurses and providing training and education programs for doctors and nurses,” Rees says.

Rees maintains these activities will be diminished if not pulled together in a coherent plan Improving the quality of dementia care remains a key objective of Alzheimer’s Australia and it proposes $228 million is required to:

• Support service staff and family carers through expanded training and Dementia Behaviour Management Advisory Services.
• Fund an integrated suite of services to assist people with dementia and family carers with information, support, education, counselling and access to services.
• Develop systems to make hospitals safer places for people with dementia by increasing recognition of those with dementia and improving coordination and support systems.
• Improve access to services for individuals with younger onset dementia.
• Ensure access to support and services for individuals who have severe behavioural and psychological symptoms of dementia.

An additional $40 million per year is included in the plan to boost dementia research, treatments and management practices, which Rees says is equivalent to a total research spend of about one per cent of the total cost of dementia care. A fund of $4 million is requested for a campaign aimed at educating Australians in reducing their risks of dementia by changes in lifestyle, including social and mental activity, nutrition and physical exercise, and management of other chronic diseases and factors which increase the risk of dementia (e.g. stroke, diabetes, hypertension, obesity). Rees says that, while significant, fulfilling the requests are critical if the Government is serious about providing an adequate fight back to the dementia epidemic.

“The Government terminated the Dementia Initiative in the 2011 Budget and risks squandering six years of investment in establishing a platform to plan for the future. The Dementia Initiative - Making Dementia a National Health Priority was implemented in the 2005 Federal Budget with $320 million in funding over five years. At the end of five years, both major parties supported continuing the Initiative. It was a landmark for people living with dementia because it recognised the scale of the problem and its impact on the quality of life of Australians,” Rees says.

Rees suggests that the failure of the Productivity Commission’s Final Report on Caring for Older Australians to make any specific recommendations in respect of dementia is further evidence that it needs reprioritising.

“Alzheimer’s Australia supports the strategic direction of the aged care reforms as they are based on increased choice and options for receiving care at home. However, the Commission has made no recommendations to promote awareness of dementia; to assist those with severe behavioural and psychological symptoms of dementia; to greatly expand access to respite care that meets the needs of people with dementia as well as those of carers; or to recognise the importance of dementia training and education for formal and informal carers if the quality of dementia care is to improve,” he says.

Rees says that the Fight Dementia Plan gives a high priority to investment in dementia research and risk reduction. “Dementia will become the third greatest source of health and residential aged care spending within two decades. Dementia research is grossly underfunded in relation to health and care costs, disability burden and prevalence compared to other chronic diseases. (Alzheimer’s Australia, Paper Number 16 – Australian Dementia Research: Current Status, Future Directions?, 2008)

“In the 2010-11 financial year, National Health and Medical Research Council research funding for chronic diseases was $144 million for cancer, $97.4 million for research on cardiovascular disease, $63.1 million for diabetes. Alzheimer’s disease and other types of dementias received only $19.3 million [NHMRC: Research funding statistics and data: Accessed 1 June 2011: http://www.nhmrc.gov.au/grants/researchfunding- statistics-and-data] ,” he says.

For Rees, the epidemic requires a holistic response incorporating strategic responses from all stakeholders both in health and the aged care system. He says over the last few decades much of the focus of investment by pharmaceutical companies has been in the treatment of clinical symptoms.

“Emerging research suggests dementia will be most effectively treated at the presymptomatic stage before damage is done to the brain. In terms of public understanding, perhaps the greatest challenge is to get the message across that dementia is not a natural part of ageing but a chronic illness like any other that develops over a long period of time – decades before diagnosis.

 “The challenge is to persuade health policy makers that dementia, like cancer or heart disease, needs to be addressed within a public health framework that includes information, early diagnosis, effective medical intervention and support, risk reduction and investment in research. The policy emphasis in Australia has been almost entirely through the aged care system to the neglect of primary care, acute care, risk reduction and research. “In short, the health system is failing people with dementia,” Rees says.

Researchers are investigating a number of important areas to develop a better understanding of the causes and potential treatments for dementia. These areas range from:

• Identifying genetic s imilarities of individuals who develop dementia to isolate genetic risk factors.
• Analysing epidemiological information to identify lifestyle factors that are associated with a greater risk of developing dementia.
• Investigating the biological, chemical and cellular mechanisms of dementia including the role of the major biological hallmarks of Alzheimer’s disease - amyloid plaques and neurofibrillary tangles.
• Development of new improved diagnostic tools such as markers in blood samples or identifying the presence of amyloid through brain scans.
• Development of stem cell therapies.
• Investigating the possibility of a vaccine.
• Clinical trials into new treatments.
• Developing new medications that target the biological mechanisms of dementia.

Recently, there was significant media developed at the University of Sydney. This vaccine targets a damaged protein known as tau (see news story on page 6 of this issue) that is involved in the development of neurofibrillary tangles in Alzheimer’s disease. This vaccine has only been tested in mice and is one of many new treatments that are under development.

The vaccine would not be ready for human trials for at least another five years. “Research strategies have the twin objectives of identifying those individuals most at risk, and the interventions that would delay progression of dementia. Through imaging and other tests, research has already identified those most at risk for the purposes of research projects,” Rees says. “The prizes in dementia research will go to those who find a simple test that identifies those at risk and to those who are able to develop interventions that will delay dementia. It is estimated that if the onset of dementia could be delayed by five years the number of those with dementia could be halved by mid-century.”

Rees says the National Dementia Congress is an important and timely forum because it requires all stakeholders to mobilise, recognise and prioritise dementia as a critical red-flag health issue that goes beyond a forgotten cause of beige aged care. “Moreover, the scale of the issue and the failure of Government to plan and act on the epidemic can only be helped by having a forum that promotes a better understanding and insight into the treatment of people with dementia,” he says

“Dementia will affect t everybody’s lives in one way or another. There will be nearly one million people with dementia by 2050 – the equivalent of a city three times the size of Canberra. That is the world we will face in 2050. We need the Government to re store dementia as a health priority now and to invest in action to combat the dementia epidemic.” – Glenn Rees

The above article, by David Hutchins, was first published in the February 2012 edition of Hospital and Aged Care Magazine. All rights reserved. Used with permission

Click here to download a PDF of the full article as published