Should Australia adopt a national Dementia plan?

 

Anyone who works in healthcare, particularly those in aged care, can attest to the fact that dementia is one of the largest problems facing our aged population. Here are a few Australian facts courtesy of Alzheimer’s Australia:

  • There are more than 413,106 individuals in Australia living with dementia
  • Currently 244 new individuals will be considered has having dementia every day
  • Dementia is the second leading cause of death of Australians
  • In 2017 the cost of caring for those with dementia in Australia is estimated to be 14.67billion
  • Dementia is the single biggest factor leading to disability of adults over the age of 65
  • Dementia accounts for 52% of those residing in aged care facilities (RACF)

It is a huge problem! In an article on the 2nd of June in Australian Ageing Agenda Maree McCabe of Alzheimer’s Australia has strongly encouraged Australia to join the international community in developing and funding a national Australian dementia policy. In the article it states that the World Health Organization (WHO) has adopted a Global Plan of Action on Dementia, and that Australia should join other countries in adopting it.

What is Australia doing about it?

The government’s response has not been favorable to Alzheimer’s Australia’s (AA) request. Dr Margot McCarthy told a Senate estimates committee that, although she was aware of AA’s request there was no national strategy but a series of increased funding for research and new dementia-specific programs. Dr. McCarthy also in her statement referred to the National Framework on Action on Dementia, but said the government had to decide on how to follow-through with the framework.

The National Framework on Action for Dementia 2015-2019 was developed by the  Australian Health Ministers Advisory Council (AHMAC) through a consultative process and merely serves to

The purpose of the Framework is to guide the development and implementation of actions, plans and policies to reduce the risk of dementia and improve outcomes for people with dementia and their carers. It does this by drawing on current evidence to promote dementia friendly societies and delivery of consumer-focused care.

The keywords here is ‘guide’ and ‘development and implementation’. This is NOT a national framework, but merely a fact-finding paper with the results of interviews and consultations on the problem. While the national framework policy does not give any direct action to the problems of dementia, there have been some attempts by the government to tackle dementia issues.

In June of 2016 the government began a commitment to tackle the issue of dementia in the community by the initiation of the Severe Behviour Response Teams (SBRT), a partnership between the government and Hammond Care. The SBRT is meant to be an assessment and management team designed to visit the individual and work to identify and create strategies to handle adults who suffer from dementia-related behaviours. The government also acknowledged at the time that specific dementia facilities for those with behaviours would be needed. Dr. Judd, then chief executive of Hammond Care, indicated that accreditation standards for aged care facilities had led to those facilities increasing in size and therefore “as nursing homes get bigger and bigger, it becomes harder not to have institutional buildings which are less homelike and more regimented… Today, the public areas of some aged care ‘facilities’ look more like airport lounges than lounge rooms” (quote by Dr. Judd taken from this article).

A year later and the Ageing Australian Agenda article confirmed that the special dementia units promised in 2016 were largely not developed. Therefore, the bulk of dementia-specific management of older adults rests squarely on the shoulders of current residential aged care staff and caregivers when dementia-sufferers are at home. But what about the WHO’s Global Action on Dementia? Wouldn’t that give some indication on where Australia should go?

The World Health Organization and Dementia

I have looked through the WHO’s website and cannot see any agreed final document on the global action on dementia. According to the WHO dementia has been labeled as a public health priority in 2012 and a Ministerial Conference on Global Action on Dementia did occur in 2015, resulting in a draft document of the same name. In the push for WHO development of information a site entitled The Global Dementia Observatory was meant to be a sharing house for information relating to statistics on global dementia and development of strategies to treat and handle those with dementia. However, in my research neither has the Global Action on Dementia been finalized nor has the Global Dementia Observatory been created and implemented despite statements made by Alzheimer’s Australia.

So from my perspective after looking at all of the information the WHO is no further in looking for a unified dementia strategy than Australia is. We continue to develop reactionary stop-gap measures to modify behaviours and reduce pressure on caregivers. But that does not help identify and treat the root cause. Non-government organizations like Alzheimer’s Australia and Hammond Care are doing great things to try and help this looming national (and international) epidemic.

We in healthcare are at the front-line of this issue. Of the patients I see a vast majority are over the age of 65, as they take up more acute healthcare beds. And while I do not have specifics of those with dementia I can say with my experience that many who enter our beds do. Dementia causes quite a few issues that can lead to life-shortening situations.

My thoughts

Those who follow this blog know that I have talked twice about the concept of ‘premature deaths’ a topic surrounding why individuals in aged care facilities are dying from un-natural causes. Falls was listed as the greatest cause of these premature deaths. I wonder if Mr. Ibrahim’s proposed study would look to identify of those falls how many patients have a diagnosis of dementia? Being reasonable and looking at common sense, if I do not have dementia and have all of my faculties would I not use the vast range of mobility aids and ask for help to prevent falling when I look to walk or even stand? Those with dementia do not have the for-sight to realize that they are no longer able to mobilize without help, and therefore are at higher-risk of falling.

Interestingly Dr. Judd in his address in 2016 also talked of aged care facilities becoming larger. This is another troubling point. Larger facilities mean more residents for staff to monitor in a larger space. Another interesting study could look at the amount of time each staff is given per resident. I think it would find that staff have difficulty in adequately supervising residents, particularly those with dementia who are prone to stand and walk- and therefore fall.

Unifying Australia’s stance on dementia and the associated research and programs would give clarity and focus within all aspects of the aged care community. Let’s face it, the aged care population is faced to grow over the next few years. And with it those with dementia is also most likely going to grow. It is a debilitating condition that we need to know more about to effectively care for and treat. I agree with Mrs. McCabe, Mr. Judd and the WHO that we need to put more focus on a unified and strategic plan to deal with this growing epidemic.

References

Australian Ageing Agenda: Australia behind as global dementia plan endorsed

Alzheimer’s Australia: KEY FACTS AND STATISTICS FOR MEDIA – NSW

Australian National Framework for Action on Dementia 2015-2019

Australian Ageing Agenda: Coalition to fund special dementia care units for severe behaviours

Dementia Behaviour Advisory Service

Hammond Care: Severe Behavoiour Response Team

World Health Organization: Dementia

 

Healthy one day, sick the next- the issue of Diagnosis Creep

 

An article by Hugo Wilcken in the Medical Journal of Australia InSight page turned me onto the discussion over ‘Diagnosis Creep’. Essentially this is coined as a negative term for the change in definitions of diseases which causes an increase in those diagnosed with that disease which prior to the change would be otherwise considered as not having it. An example would be osteoporosis where in 2008 a new definition was adopted and instantly changed the affected population of women from 21% to 72%! Similarly changes to definitions have created ‘pre-‘ conditions in the diseases of diabetes and hypertension. Wilcken contends that what makes these changes diagnosis creep is that they do not offer health benefits as the treatments do not successfully aid to overall health or well-being.

Some factors have been forwarded to explain diagnosis creep. One such idea is that of the ‘pre’ classification of diseases. Therefore, you may not clinically have the disease, but you are at risk of contracting it. Another theory is that the expert panels who decide on what clinical factors are needed to lead to a diagnosis are made up of clinicians who specialize in their field. These experts, in order to be able to treat effectively, tend to be more inclusive than exclusive when re-examining factors and therefore lessen the threshold for diseases.

Then there is the nasty side of diagnosis creep. There seems to be a pervasive concern that pharmaceutical companies have a wayward hand in expanding the population with certain diseases in order to increase sales of medications for that disease. The MJA InSight article discusses this as ‘Big Phrama’ and contends that some ‘expert panel’ members are sponsored by pharmaceutical companies- leading to potential conflicts of interest. A similar argument was made in an article in The Conversation in 2016.

No matter what the reasons diseases are being re-defined to include more patients an article in the Australian Prescriber magazine sums up the reason for this post:

Health professionals should be more aware, and patients and the public better informed, about the controversy surrounding many contemporary definitions of disease. Diagnostic criteria are not set in stone – they are regularly changed, often with the best of intentions, but are also often rigorously challenged because of the potential for unintended harms.

In Australia the issue has been seen as serious enough that the NPS group has developed an entire campaign entitled “Choose Wisely” to inform and attempt to tackle the need for certain tests, treatments and procedures. Readers of this blog can also follow the Choose Wisely campaign on Twitter at @ChooseWiselyAU.

Before the MJA article I had not known about diagnosis creep, nor the controversy surrounding it. However, the issue does make sense. All healthcare professionals should be conscious of how and why patients are being diagnosed with diseases and what treatments are being given. While I do recognize the need for disease management and appropriate medications I also recognize that we can easily over-medicate and the elimination of any unneeded treatment would be valuable, particularly in the elderly. I applaud the works of Wilcken and the NPS at serving as a checks-and-balance system in this most important area.

References

MJA InSight: Diagnosis creep: the new problem in medicine

The Conversation: Resisting expanding disease empires: why we shouldn’t label healthy people as sick

Australian Prescriber: Caution! Diagnosis creep

NPS Medwise: Choosing Wisely Australia