There is no drug available that effectively addresses the underlying pathology of any of the major diseases that cause dementia. Recent data from major drug trials focussed on immunological strategies to tackle conditions like Alzheimer’s disease have not been promising, and we are so far off understanding the biological basis of conditions such as frontotemporal dementia and Lewy body dementia that a pharmaceutical-based approach for addressing these diseases is decades away, at best. The drug armamentarium for dementia is currently limited to drugs that provide symptomatic relief, such as improvements in cognitive function and activities of daily living. For some people with dementia, these are effective for a period of time, but they do not delay degeneration.
In the meantime, the ageing of populations around the world will lead to a substantial increase in the numbers of people with dementia. On the positive side, recent studies have indicated that the age-related prevalence of dementia may have decreased by around 20-25% in developed countries, likely due to improvements in potentially modifiable risk factors such as early life educational attainment and the management of vascular health. However, most of the ‘risk’ of dementia relates to relatively unmodifiable factors, namely ageing, and variations in particular genes. The risk of dementia rises steeply from the late 70s to mid 80s. In this regard, increased longevity, as well as demographic features in countries like Australia, such as the ‘baby boomer’ population bubble, will lead to a massive increase in the numbers of people of dementia. Low to middle wealth countries that are showing the steepest rises in longevity will also have the fastest increases in dementia cases. In Australia, dementia is now the second major cause of death after ischemic heart disease and is soon to be the number one cause of death for women. During the next 10 years many more people are expected to live well into their 80s and beyond, placing them at much greater risk of developing dementia.
Are we prepared for this major health, economic and social issue? Anyone affected by this condition will tell you ‘no’. By world standards, Australia has an advanced health system, and while there is tremendous will on the part of those working in the aged care sector to provide high quality care for people with dementia, there are major gaps that arise less as a consequence of lack of money spent, but on the lack of preparedness, a deficit in understanding, of individuals, health providers and social systems. How did this arise? Dementia has an associated historical stigma which has sometimes meant that, unless directly affected by the condition, people rarely spontaneously pursue knowledge about it. Furthermore, having dementia significantly reduces social mobility and engagement, with the consequence that those with this condition may become isolated in their own living spaces, or in a residential facility. If we don’t see people with dementia, then that may not be an issue we need to think about?
Additionally, issues concerning health training and care systems, and demarcations within health systems, also contribute to our lack of preparedness. While dementia is considered to be one of the major health issues of this century, most of the health professional training programs for our future doctors, nurses and allied health practitioners, provide very little, (and usually poorly integrated), education around the conditions that cause dementia, the various risk factors, and the evidence for how quality care can be configured. Most dementia care is provided by proximal members of family (ie unpaid) and then by Aged Care Workers (also variably referred to as Personal Care Workers, Assistants in Nursing, Personal care Assistants) working in the community and in residential care. Aged Care Workers will usually have a minimum, more often a maximum, of certificate III-level vocational qualifications (nowadays in ‘Individual Support (Ageing, Home and Community)’) and will expect a salary of around $40-45,000 per annum, or just above $20 an hour. Dementia-specific unit offerings in these qualifications are considered as potential elective, non-core options. Aged Care Workers are expected to support the oldest, most frail members of society on a wage that places them on the lowest rung of health workers nationally. Nurses also have crucial roles in aged care, however, this is mostly focussed on oversight of clinical practice in care settings and less on the complex care requirements of individuals with dementia.
The Australian Aged Care Quality Agency is responsible for providing assessments against accreditation standards for providers of community-based and residential aged care. The accreditation standards themselves are process-oriented, focussing largely on clinical care, and have very little to say about end-of-life care and dementia (referred to briefly in some sections as ‘cognitive impairment’). These standards are inadequate against our evolving understanding of dementia as a progressive and degenerative condition. Many residential facilities are morphing into sub-acute care facilities for those of advanced age, with the majority of their clients having moderate to severe dementia, and who are unlikely to live more than 18 months in the facility before dying. The standards are also not outcome focussed in terms of their consideration of clinical incidents, particularly those that may be potentially avoidable. They have very little to say about what level of education and training the aged care workforce requires to meet this changing face of residential aged care, and care for people with dementia in the community.
From February, 2017, the Commonwealth Consumer-Directed Care initiative funding for home care packages will follow the consumer. Likewise, the Government has committed to establish 31 ‘Specialist Dementia Care Units’ across the Primary Health Networks. Given that many who read this article will enjoy advanced ageing but may also develop dementia, the question becomes personal – if you were to develop Alzheimer’s disease, vascular dementia, frontotemporal dementia or Lewy body disease, what standard of care and workforce education would you expect from those caring for you? This was recently explored by the Alzheimer’s Society in the UK who, in a national study, found that only 2% of people affected by dementia considered that homecare staff had sufficient dementia training. Furthermore, only 38% of local authorities that deliver homecare services in the UK provided dementia-specific training. No such data is available in Australia. Our research at the Wicking Centre has indicated that there are significant gaps in knowledge about dementia in both family carers as well as across the formal health workforce that is responsible for dementia care in the community, hospitals and residential care.
As possibly the most significant health issue of the 21st Century, it is important that Australia and other countries adopt a set of strategies to address the provision of quality care for dementia as the prevalence of this condition steeply escalates. Top-down strategies include national policies as well as funding settings and tools, and the Australian Government has been adapting and changing its strategy accordingly in recent years. Stresses on future funding to match increasing need may well result in further policy changes, as well as related instruments of support, likely transferring more costs of care back to users. The wider community will need to grapple with how financial assets are deployed to cover the final years of life for a large proportion of older citizens with dementia.
Another approach to boosting quality dementia care, which could may promote efficiencies and innovation, is ‘bottom-up’, relying on a suitably skilled workforce that high levels of dementia literacy – specific knowledge and skills for caring for people with dementia. With the support of the J.O. and J.R. Wicking Trust (Equity Trustees) and the University of Tasmania, the Wicking Centre has been working closely with national and international colleagues to build a suite of evidence-based courses to address dementia literacy for both formal and informal carers, as well as the related health workforce. This has included two free Massive Open Online Courses (MOOCs) on ‘Understanding Dementia’ (commenced 2013, 9 week course with approximately 27 hours of content) and ‘Preventing Dementia’ (commenced 2016, 5 week course with approximately 12 hours of content). The Understanding Dementia MOOC has a focus on the brain changes associated with diseases that cause dementia, how these brain changes manifest in clinical, behavioural and social domains, and the latest evidence about what constitutes high quality care. By taking a ‘brain to care’ approach, it is hoped that the MOOC learner will appreciate the care and support required at different stages of the condition that reflect the progressive and degenerative disease-related changes at play in the nervous system. This MOOC has now been undertaken by over 90,000 people across Australia and in over 150 countries, with a world-leading MOOC completion rate of 40% overall (most MOOCs have completion rates around 5-10%). In 2016, this MOOC was rated in the top 50 online short courses globally (out of over 6,000 MOOCs) by Class Central, and was the number one rated MOOC in the health and medical category. Our own research has indicated that the MOOC is highly accessible, with similar rates of completion for participants who do and do not have tertiary qualifications. The broad demographic profile of MOOC participants is female, in their 4th and 5th decade of life, and includes family carers, aged care workers, nurses, allied health professionals and doctors. The Preventing Dementia MOOC was piloted in 2016, with a completion rate of 49%. This MOOC focusses on the evidence for potentially modifiable risk factors of dementia, and, if key health management messages are widely promulgated, may represent a useful public health intervention to reduce future prevalence of dementia.
The Wicking Centre also piloted an Associate Degree in Dementia Care in 2012, in partnership with the aged care industry, which has since evolved into a fully online Bachelors program with exit points at the Diploma (1 year equivalent study), Associate Degree (2 years) or Bachelor (3 years) level. The Diploma level also includes foundation units to assist new learners at the tertiary level, particularly with online educational technology, critical analysis and academic writing. The dementia degree program has two broad themes on ‘understanding dementia’ and ‘models of health care’. In terms of a qualification best suited for a Dementia Support Worker, we suggest that the Associate Degree level is most appropriate, with the core program providing insight into the diseases that cause dementia, principles of support and appropriate care for people with dementia, communication with people with dementia and medical and non-medical approaches to therapy and management. The course structure also provides opportunities for electives to explore interests such as nutrition, ethical and legal dimensions and the role of the arts in dementia therapy. The full Bachelor course involves a particular focus on social sciences and neuroscience research relevant to dementia. We recommend that the 3rd year program may be of more relevance to students interested in the role of research in evidence, policy and therapy, and may be a pathway to further postgraduate study. To bridge these programs, the Understanding Dementia MOOC is also as a pathway into the dementia degree program, with MOOC participants able to undertake a unit for credit for MOOC learnings and entry into the degree program. This dementia degree program has been a very popular offering at the University of Tasmania, with students across rural, regional and urban centres in every state and territory, and is currently the 4th largest course at the University of Tasmania.
While the Wicking Centre was the first to develop a dementia MOOC and an undergraduate degree program specifically on dementia care, there have since been more dementia MOOCs developed across the world, but not yet a strong push to increase dementia-specific content in health professional degrees, and there are no other tertiary-level undergraduate dementia care degrees in Australia. We are of the view that an offering such as the Understanding Dementia MOOC should be a key form of professional development for all the dementia health workforce, and perhaps ancillary staff as well. This would help level the field in terms of a common standard of dementia literacy for all of those working directly with someone with dementia. With the advent of consumer directed care, people with dementia and family carers may find this MOOC of some assistance in helping to determine what kinds of support and services may be appropriate and useful.
Tertiary qualifications should be for those who may like to take their learning and expertise in dementia further, perhaps for aged care workers who envisage roles such as team leaders, managers, trainers and educators or ‘dementia care specialists’, working closely with nursing and other clinical staff. In this regard, dementia care specialist may be a useful descriptor for those workers who have undertaken the Diploma or Associate degree level qualifications in a degree specifically focussed on dementia care, and should also be recognised by industry organisations and in relevant award/renumeration structures.
Accreditation expectations of facilities that have high proportions of people with dementia, or indeed, dementia-specific units, should include an expectation of specific dementia knowledge and educational requirements. Disability and aged care workers represent a substantial proportion of the health workforce in Australia, but both sectors are essentially unregulated, without registration requirements as dictated by the Health Practitioner Regulation National Law and overseen by the Australian Health Practitioner Regulation Agency. As other health professional areas similarly unregulated, such as paramedics, are increasingly relying on recruitment of staff with tertiary qualifications, high quality aged and dementia care providers could also make use of a requirement for advanced education and training where a thorough understanding of the dementia field is essential. Aged care providers should also be mandated to be learning organisations, providing high quality training and educational opportunities both internally for staff at different levels, but also for other health professionals in training that have placements in their facilities.
There should also be more than one post-vocational educational provider than the University of Tasmania, and perhaps an industry-led body that details requirements of dementia care specialists, as well as their scope of practice, and accredits relevant university courses. Relatedly, the available evidence for what constitutes high quality dementia care, and how it is configured currently and to match a future substantial increase in prevalence, is not robust. This kind of research has not been well serviced by traditional national funding agencies, but the Medical Research Future Fund, or various initiatives through the NHMRC National Institute for Dementia Research, may provide an opportunity to support the establishment of evidence that will shape quality care in the face of a substantial rise in the prevalence of dementia.
A commitment to quality, research, innovation and workforce development in dementia care is essential for Australia to meet the challenge of an increasingly ageing population. The bugbear in all of the proposed policy settings mentioned above is funding and cost – high-value qualifications should be associated with increased rates of pay. In an environment where the person with dementia and their families or nominees will have a greater role in dictating the quality of their care, now is not the time to seek to manage costs by downward pressure on expectations that the dementia workforce has some, ideally a good to excellent, understanding of dementia and what constitutes quality dementia care.