Understandably, nearly half of people living with dementia say fear and stigma are barriers to diagnosis, according to the ADI World Alzheimer’s Report 2021.
While a diagnosis may seem distressing, getting confirmation of the condition as early as possible can make a huge difference.
A recent study, published in the Lancet, showed that early diagnosis can reduce the burden of Alzheimer’s by one third.
Knowing what you are dealing with empowers you to get the information and support you need to continue living an enjoyable and fulfilling life. Early diagnosis gives you more time to put in place vital social and emotional support and to ensure your wellness needs are addressed.
But, unfortunately, despite the prevalence of Alzheimer’s, there are myths and misconceptions about the disease. So, debunking these and encouraging diagnosis is hugely beneficial.
Myth one: dementia is a normal part of ageing.
Slowing down and finding it harder to do many things at once is part of getting older. But losing memories, knowledge and skills is not. Although one in ten people over 65 have Alzheimer’s, making it the most common neurodegenerative disorder, symptoms should never be dismissed as just part of normal ageing.
Behaviours such as repeating the same questions, regularly losing things, getting lost, being confused about time, or forgetting names, may all be signs of dementia. If you recognise these symptoms in yourself or a loved one, then it is time to seek advice.
Myth two: dementia and Alzheimer’s are the same thing.
This is commonly misunderstood. Alzheimer’s is a disease while dementia is a collection of symptoms. Alzheimer’s is the most prevalent form of dementia, accounting for 60-80 per cent of all cases, but there are other forms including vascular and fronto-temporal dementias.
While all ultimately result from the death of nerve cells in the brain, the causes are different. Vascular dementia, for example, is usually caused by lack of oxygen to the brain. Alzheimer’s is a physical disease, causing protein tangles and plaques to build up in the brain, disrupting nerve cell communication. Memory loss is normally the first indication of this disease.
Alzheimer’s follows a clear clinical progression. Identifying it at the earliest stage possible helps it to be diagnosed and managed.
Myth three: only old people get dementia.
While it’s true that most people with a diagnosis of Alzheimer’s or dementia are over 65, it’s by no means a disease of the elderly.
Early onset Alzheimer’s accounts for three per cent of cases and can affect people as early as their 30s. Knowing the signs and getting them checked is important.
Myth four: dementia is a hereditary condition.
Fewer than one in a hundred cases of Alzheimer’s are inherited so it is wrong to rely on the health of parents or grandparents as an indicator of whether you or a loved one may have the disease.
Early onset Alzheimer’s is more likely to be caused by a rare familial abnormal gene which could be passed on to subsequent generations of the family. This is also the
case with other rare types of dementia, such as Huntingdon’s disease, which are often hereditary.
Myth Five: there is no treatment for dementia or Alzheimer’s disease so there’s no point in a diagnosis.
There is currently no cure for Alzheimer’s although medical science continues to make considerable progress. Worryingly, the latest ADI World Alzheimer’s Report discovered that a third of clinicians feel nothing can be done about dementia, so why bother diagnosing.
There are a variety of treatments that may alleviate the cognitive and behavioural symptoms associated with it which can improve life quality and reduce pressure on carers. But they do not ultimately change the course of the disease. While a cure remains the ultimate goal, it’s looking hopeful that there will be drugs available to modify the progress of the disease, and slow or halt it in the near future.
Myth Six: diagnosis is inaccurate.
There is no single definitive test for Alzheimer’s but existing pathways to diagnosis are good, and memory clinics do an excellent job with tests designed to monitor cognitive abilities. But reliable and early diagnosis remains a challenge since the current reliance on neuroimaging scan is restricted in access.
However, a new generation of simple blood and bio-marker tests are being developed which are expected to transform diagnostics. Prototype blood tests are already achieving 90 per cent accuracy. These will enable GPs to conduct tests quickly and effectively rather than relying on the convoluted pathway to scanning, enhancing access and the speed of the process.
Many treatments in the global research pipeline are targeted at stopping or slowing the decline in brain function so, the earlier intervention is achieved through improved diagnostics, the better.
Myth Seven: Alzheimer’s is not fatal.
Sadly, Alzheimer’s is fatal. It’s a progressive degenerative disease which causes the brain to atrophy through loss of brain cells. Life expectancy will vary greatly depending on the point at which a diagnosis is received, disease severity, and whether other health problems that might be contributing to disease progression can be improved.
Investing time in improving and protecting brain health earlier and getting an early diagnosis of any form of dementia are likely to be the best ways to mitigate these risks and prolong the duration and quality of life.
When the truth behind the myths is revealed, it becomes clear that early diagnosis empowers people with Alzheimer’s while stigma and falsehoods disempower them. Removing the stigma and debunking the myths is the key to encouraging early diagnosis and achieving better outcomes for those affected.
Dr Sonya Miller is head of medical affairs at TauRx, a company specialising in tau-based Alzheimer’s disease research with a mission to discover, develop and commercialise innovative products for the diagnosis and treatment of neurodegenerative diseases caused by protein aggregation