CHAPTER 27 Getting ageing on the agenda — lessons from Alzheimer’s Australia

FRAMEWORK

This chapter outlines the importance of effective campaigning for improved care for people with dementia. The lessons from Alzheimer’s Australia in their work to promote dementia as a national health priority are extremely useful ones for all those involved in improving care. The improvement of intellectual capital in the organisation has made it the leader in the field of policy development and political advice. This has meant forming stronger relationships with academe as well as providers and the community. The funding and commissioning of reports and the development of education tools such as fact sheets for the public has raised the profile of the organisation. Getting aged care on the political agenda has not been easy and the important factors that have created some success are discussed in this chapter. [RN, SG]

Introduction

Following Kevin Rudd’s 2020 Summit in Canberra in May 2008, Anna Howe asked ‘why, despite the best efforts of the seven “ageing” participants in the health stream, did ageing issues fail to rate?’ (Australian Association of Gerontology 2008).

Dr Howe went on to observe that ‘ageing is still not integral to thinking about the Australian health system’, and suggested three strategies that might assist in leveraging ageing priorities onto the broader health policy agenda:

• first, by taking advantage of opportunities for policy input to government review processes

• second, by consolidating the many proposals put forward in the past as a means of refocusing and revitalising policy debate

• third, by taking advantage of other processes including working with the Council of Australian Governments and the Ministerial Advisory Committee on Ageing.

Similarly, the broad consensus within the National Aged Care Alliance ¹ is that aged care did not attract much political attention during the November 2007 Australian Government election (Aged and Community Services Australia 2007). Indeed, there is considerable pessimism about what priority it will attract in the next few years despite the documented concerns that exist about the sustainability of aged care.

It is arguable that the malaise that pervades the aged care sector is comparable to that which existed in Alzheimer’s Australia in 2000 when the national office was re-established by the state and territory members of Alzheimer’s Australia. Establishing dementia as a National Health Priority with additional funding was an ‘impossible dream’ — so impossible indeed, that it was not even articulated. And a national office comprising one person, albeit supported by significant state and territory organisations in most states, made it seem still more impossible.

The objective of this chapter is to provide a view — from the perspective of someone who has been involved in policy development within government and within Alzheimer’s Australia — of some of the major elements to which the outcome of making dementia a National Health Priority can be reasonably attributed ². There will then be discussion of whether there are lessons in that experience for promoting aged care — and perhaps ageing more widely — onto the political agenda in Australia.

Making dementia a National Health Priority

The Howard Government announced that if re-elected it would make dementia a National Health Priority at its election launch during the October 2004 Australian Government election. The promise was to provide $200 million over 4 years. The implementation of that commitment in the 2005 budget provided $320 million over 5 years, exceeding the promise — $64 million a year compared to $50 million.

Many factors contributed to dementia becoming a National Health Priority but in my view there are three main elements that should be emphasised in the successful advocacy of Alzheimer’s Australia:

• firstly, the change in the culture of Alzheimer’s Australia

• secondly, building intellectual capital to make the case

• thirdly, communicating the advocacy more effectively.

Many factors contributed to dementia becoming a National Health Priority.

Change in organisational culture

At the end of the 1990s the national organisation of Alzheimer’s Australia had fallen on hard times as a result of poor governance and conflicting personalities. Alzheimer’s Association Queensland had left the national organisation and there seemed to be no prospect of their rejoining. For a number of years the national office was serviced on the basis of a state executive director fulfilling the function of national executive director. The then Commonwealth Minister for Ageing, Bronwyn Bishop, and the Australian Government Department of Health and Ageing made it clear to the member organisations of Alzheimer’s Australia that if they wanted to secure national dementia funding and to influence the policy debate they had to re-establish their credentials as a national organisation. Member organisations recommitted resources to the re-establishment of the national body in 1999 in the renewed belief that the whole would be greater than the sum of the parts.

The appointment of a national executive director as the spokesperson nationally for the organisation was an important first step. The role of the director was to facilitate cultural change within the organisation, build intellectual capacity and to advocate at a national level. With the commitment to a national approach came the funding from government that was critical to achieving the change process and, in particular, the delivery of nationally consistent services.

With the commitment to a national approach came the funding.

National unity has been a prerequisite for more effective advocacy, but the change in culture has been dramatic in other ways. As an advocacy organisation, Alzheimer’s Australia is now much more assertive, positive and focused than at any time in the 25 year history of the Alzheimer’s family in Australia.

Importantly, from 2001 the power of advocacy by family carers was supplemented by the self and systemic advocacy of people with dementia. Alzheimer’s Australia became inclusive of people with dementia by empowering them to present their stories to conferences and seminars and the media, thus demonstrating in the best possible way that life does not stop with a diagnosis of dementia. More recently people with dementia have been involved in self advocacy in other ways; for example, at the Alzheimer’s Australia National Consumer Summit on dementia at Parliament House in October 2005 and since then in the ongoing National Consumer Committee and state and territory consumer committees.

Power of advocacy by family carers was supplemented by the self and systemic advocacy of people with dementia.

Building intellectual capital

Alzheimer’s Australia had the opportunity from 1993 to play a role in the implementation of the National Action Plan for Dementia Care. But the opportunity provided by the plan was not sustained in the advocacy and intellectual development of Alzheimer’s Australia. When I joined the organisation in 2000, Alzheimer’s Australia had not published a policy paper for many years. At that time there was no website, and only one member organisation had a policy officer.

The building of intellectual capital was made possible by the funding provided by the Australian Government through the Community Sector Support Scheme, which allowed high quality research reports to be commissioned and published.

The driving force in developing ideas was a partnership with key researchers, notably Professor Anthony Jorm. The publication by Alzheimer’s Australia of a short paper by Professor Jorm (2001) demonstrated that with increasing longevity, neurological diseases, of which dementia was the most significant in terms of numbers of people, would become the dominant public health issue in the 21st century. The media attention that this short paper attracted gave Alzheimer’s Australia the confidence to plan for a more comprehensive publication that would articulate the economic and social impact of dementia on Australia. Importantly, interaction with the media forced the realisation that while posing the problem was important, offering some positive solutions was critical.

The driving force in developing ideas was a partnership with key researchers.

Access Economics was commissioned in 2002 to write a report: The dementia epidemic: economic impact and positive solutions for Australia. The report was published in May 2003. It is interesting to reflect on why the report, good as it was, attracted such positive media and political profile. Much of the report was not of itself new. The work of Professors Henderson and Jorm (Henderson & Jorm 1998) had articulated the increasing prevalence of dementia with the ageing of the population since the late 1980s in a series of publications funded by the predecessors of the Australian Department of Health and Ageing. The Australian Institute of Health and Welfare had published significant work on disability burden on a range of chronic diseases including dementia and had also done work on the costs of dementia (Mathers et al 1999).

What made the 2003 Access Economics report different perhaps was that:

• it was comprehensive in providing all the information in one place

• it had an executive summary that made accessible information that was persuasive in arguing dementia should be a National Health Priority

• it presented some innovative scenarios that suggested possible approaches to dementia care as having positive cost-benefit outcomes

• Access Economics is seen as an authoritative independent organisation on economic issues and not as a vested interest in the aged care sector.

The report gave Alzheimer’s Australia and its advocates a clear point of reference and a very well informed base on which to make its case. The reference was quite simply to argue for dementia to be a National Health Priority. For the first time, Alzheimer’s Australia had a marketable message that in a few words captured what we needed to better support people with dementia and their family carers. Alzheimer’s Australia also had a good network to spread the message on a sustained and consistent basis.

Alzheimer’s Australia has since commissioned five other reports from Access Economics on a range of issues.³ The published reports include: Delaying the onset of Alzheimer’s disease; Dementia estimates and projections; Dementia in the Asia Pacific region; and Dementia prevalence and incidence among Australians who do not speak English at home. A further report has been commissioned from Access Economics on the costs of dementia to family carers and business with a view to exploring the workforce implications and better ways of supporting family carers.

In addition to these reports, Alzheimer’s Australia has published many other papers. These include: Dementia and the built environment; Legal planning and dementia; Palliative care and dementia; Dementia: Can it be prevented?; and Decision making in advance.

More recently, a quality dementia care series has been started with the objective of promoting a wider understanding among stakeholders about what constitutes quality dementia care, including for those with special needs such as people with younger onset dementia ⁴.

Alzheimer’s Australia has established its brand as ‘the dementia experts with compassion’. The development of intellectual capital has been critical to our credibility and our brand. Important, too, has been the well regarded services provided through the eight member organisations of Alzheimer’s Australia.