As part of World Alzheimer’s Day last month, Alzheimer’s Disease International (ADI) released the World Alzheimer Report 2018 – The state of the art of dementia research.
In the report, ADI calls on Governments worldwide to commit a minimum of 1% of the societal cost of dementia to research into the disease. Dementia is currently estimated to cost Australia more than $15 billion annually, and around US$1 trillion globally, and in the absence of any new disease modifying treatments, these figures are predicted to double within our lifetime.
It seems reasonable to ask that 1% of the cost of the disease be spent understanding the cause and identifying better treatment and care regimes. There have been no major breakthroughs in dementia treatments for over 20 years. According to the ADI report, since 1998 one hundred drugs have progressed through to clinical trials and four – that’s right only four – are now in use.
It’s important to know that these drugs do not cure the condition. They help to manage some symptoms of dementia in some people, for a period of time, but provide no assistance to others. This is an extremely disappointing outcome for all those who have committed their research careers to finding better responses to dementia. Which is the leading cause of death in England and Wales, the second leading cause of death in Australia, and the seventh worldwide.
Most researchers and scientists have now shifted their focus from searching for a cure to searching for the underlying cause of dementia. Perhaps this is why philanthropists such as Bill Gates are personally investing hundreds of millions into research for earlier dementia detection and less mainstream treatment approaches.
Importantly, we are also seeing a greater focus on reducing the risk of dementia. There is already a body of evidence to support a correlation between heart health risk and brain health risk. This will and should be a real focus in the future, as we look for some evidence to help arrest the growth in the numbers of those with a diagnosis of dementia.
We at Alzheimer’s WA would also like to see priority given to research to establish the evidence around best practice dementia care and support, and the impact on the wellbeing of the person with dementia of various care responses. There is much we don’t understand about dementia, and improving the care and support available after diagnosis will go beyond simply finding a pharmaceutical response.
The other important consideration is that, by increasing the amount of dementia research, there is hope that awareness of the disease will improve and stigma associated with it will reduce.
People with dementia and their loved ones often tell me that they will do everything in their power to raise awareness of this awful disease. Why? Because they feel stigmatised and shamed by the reactions of others when they disclose the diagnosis.
Why should they have to feel this way? Dementia is not a self-inflicted injury. Dementia can happen to anyone.
In the absence of a cure and growing numbers of people being diagnosed, you may be thinking ‘well, what can I possibly do?’
It only takes one person to make a positive difference.
The most important thing you can do is offer your time and presence. Social isolation and loneliness are common concerns for people with dementia. As soon as a person reveals their diagnosis, life-long friends disappear and extended family members do not know how to respond. Human beings crave contact with other human beings. So please, don’t disappear.
The second thing you can do is help a carer with time out for themselves. When a person becomes a carer, it is usually a matter of circumstance. It is never planned. While caring is a labour of love, it is also demanding and draining. Carers need regular breaks and usually overlook their own needs.
Lastly, remember that people who are living with dementia are people like you and I. They deserve our respect, our compassion, and our understanding.
In the meantime, Alzheimer’s WA will continue advocating for more research to improve our understanding of this complex set of diseases and the symptoms they cause, research to understand how best to care and support those living with dementia, and evidence so that we can all better lower our own risk of a diagnosis of dementia.