What can you do to help put the brakes on this cruel and debilitating disease?
One in five of us who reach late middle age can expect to develop dementia. It’s the leading cause of death in women in Australia and the second leading cause of death overall. And currently there is no cure. In 2021 there were an estimated half a million people living with dementia in Australia and around 1.6 million people involved in their care. That number is expected to triple by 2050 unless there is a medical breakthrough.
In economic terms every year, dementia costs the economy more than $6 billion in health care and loss of productivity. The impact on loved ones is devastating.
During the recent UNSW Medicine & Health flagship event MedConnect, panelists Professor Graeme Samuel, chair of the Dementia Australia Board and geriatrician Dr Stephanie Ward, a UNSW Senior Research Fellow from the Centre for Healthy Brain Ageing (CHeBA) explored the impact and future of dementia in our society. The panel discussed the varying elements that come with a diagnosis, how we can help loved ones when diagnosed and what the future may look like in terms of treatment.
Dementia, Alzheimer’s, and cognitive decline. Are they one and the same?
Often, the words dementia, Alzheimer’s and cognitive decline are used interchangeably. ABC health and science reporter Tegan Taylor, who hosted the event, asked Dr Ward to explain these terms.
“Many people have asked that question, including doctors. When we’re talking about dementia, what we’re talking about is a clinical syndrome. It’s characterised by a change in what we call our cognition, which is our thinking skills. This includes memory but also things like attention, language, our ability to plan and make decisions and orient ourselves in our space. And it’s a change that is sufficient to make day-to-day life more difficult than it used to be.
“It’s not occurring because we’re medically unwell or because it’s a side effect of a medication. Dementia is often accompanied by something else called mild cognitive impairment where there’s a change in our thinking skills in our cognition, but not to the degree that it’s impacting upon our day-to-day life. So, it’s a clinical diagnosis. And of course, with all clinical diagnoses, there are limitations to that. Like all clinical syndromes there’s usually more than just one thing going on,” said Dr Ward.
Dr Ward explained dementia and Alzheimer’s are not the same thing. Alzheimer’s disease is the most common cause of dementia and Alzheimer’s disease can be found in around 70 per cent of people who are living with dementia. In other words, Alzheimer’s is a specific disease, and dementia is a disease symptom. There are over 100 diseases that may cause dementia.
“There are multiple other types including pathological types we’re still understanding and it’s that heterogeneity of different causes which I think adds to the complexity of diagnosis.”
Professor Samuel said one of the most heartbreaking aspects of dementia is there’s not enough expertise around either at a general practice level or among geriatricians as to the diagnosis dimension. He suggested it can take around three years for someone who’s showing cognitive decline to receive an expert diagnosis and even then, sometimes the diagnosis is not definitive.
Hence, that’s three years where a person is potentially not receiving the appropriate care. The panel also acknowledged about half that time might be recognising there is an issue and being brave enough to seek help.
“Part of that timeframe is also inefficiencies in the healthcare system, as well as in terms of recognising the condition, responding to those concerns, being able to access a diagnostic service and then wait for that diagnostic service,” said Dr Ward.
Being heard when concerned about cognitive ability
When asked what diagnosis and best practice looks like, Dr Ward said the first thing is having people taken seriously when they raise concerns with their healthcare professional. She said there’s a basic screen that can be done for any potential red flags or explanations.
“A basic level of investigation is often great to make sure we’re not missing some of the really obvious things that can affect thinking.”
Additionally, Dr Ward said best practice is knowing where to go for more specialist diagnosis if that’s what’s needed as well as a streamlined referral system that doesn’t involve a very long wait. She said it was important concerns are listened to and that the individual is part of that conversation the whole way, including whether you want to know the diagnosis or not.
“Some people may not wish to be told the diagnosis and I think what’s really important for us is to elicit what people want to know and what family members want to know. A good diagnosis is thorough and it’s person-centered. It’s remembering that the brain exists within a body and that body exists within a social construct.
“The information needs to be given in a sensitive way and the amount of information given really needs to be tailored to that individual person. What else is important is that we create a sense of hope, because it’s a huge thing to hear. I’ve heard too often people say they’ve been told, ‘it’s just dementia….there’s nothing we can do…it’s just old age’. We want to move away from that because that’s not the case at all,” explained Dr Ward.
Dr Ward said there are things we can do to make life better for those diagnosed with dementia, particularly with increasing excitement and investment in research and new interventions to trial.
Professor Samuel said, if either panelist were asked two years ago what could be done, the response most likely would have been, ‘very little’. However, with medical advancement, there is now more hope.
“We are starting to find drugs that might just provide some method of prevention or delay and that’s important. Not yet a cure, but certainly a delay in the onset of symptoms particularly in relation to Alzheimer’s disease. Additionally, it’s terribly important that if someone is diagnosed as having a particular element of dementia – as carers or as loved ones – we arrange for the person’s living circumstances to be such that they can live a full life, as they’ve always been able to do. That in many respects is so important in delaying the onset of the disease,” explained Professor Samuel.
Where to seek help
Professor Samuel said if you are concerned about the cognitive ability of a loved one or yourself, contacting the helpline at Dementia Australia is a good place to start. Half the battle is knowing where to turn, however Dementia Australia can provide guidance.
“From there you can be directed and given assistance to so many different aspects, where you might be able to go to get the proper diagnosis and where you might be able to receive the proper care. Importantly, how can a loved one caring for someone showing cognitive decline help modify elements of their living conditions.”
Professor Samuel stressed the importance of having skilled specialists to help manage the many elements that come with a diagnosis, such as driving licenses having to be reviewed.
“Unfortunately, when someone starts to show a significant cognitive decline then issues like driver licences must be reviewed. For so many people one of the most devastating aspects is to have their driver licence removed.
“Sensitivity is so important, because when you say to someone you have dementia, it’s devastating. Caring geriatricians and doctors know how to sensitively deal with this issue, particularly as there are many people who will be in denial. So, it’s important to have someone who’s skilled not only in diagnosis but skilled in dealing very sensitively with his or her patients.”
Dementia Australia: 1800 100 500 or visit https://www.dementia.org.au/