Scientists are learning to diagnose and even predict the onset of incurable neurological diseases like Alzheimer’s and Parkinson’s earlier and earlier. As doctors get closer to predicting whether you will develop an incurable disease at some point in your life, an important question pops up: would you want to know, even if there was no cure?
The answer seems to be yes.
Results released from a survey have shown that, globally, an average of three out of four people would want to know if they were going to develop an incurable neurological disorder. More people, 81 %, would want to know if a loved one was going to develop such an illness.
With 91 %, Brazil had the highest proportion of people saying they would want to know their own diagnosis, while China showed the lowest with 53%. In all countries surveyed, women showed a greater interest in knowing theirs and their loved ones’ diagnoses than men.
The survey results also showed the extent of people’s desire to know. An overwhelming 94% of respondents agreed that dementia diagnosis should be paid for by government or health insurance, but more than half (51%) said that they would be prepared to pay for diagnosis themselves.
“What these statistics tell us is just how strongly people feel about tackling neurological disorders,” said Marc Wortmann, Chief Executive of the Alzheimer’s Society. “Worldwide, nearly 44 million people have dementia and this number is expected to double in 20 years as the world’s population ages. Although there is no cure yet, a timely diagnosis is useful for people with dementia to get access to current treatment, services and support, both medical and non-medical. Governments and healthcare systems need to ensure ready access to the diagnostic tools already available to accurately diagnose disorders such as Alzheimer’s and Parkinson’s, so that people can manage the symptoms as early as possible.”
The value of knowing
Dementia is a term used to describe several neurological disorders that cause a loss of brain function. These conditions are usually incurable, and eventually fatal. The most common forms of dementia are Alzheimer’s and Parkinson’s, which are thought to affect 44 million people worldwide. This figure is expected to rise to 75 million by 2030.1 As the threat of dementia looms over an ever-ageing population, the ability to predict its onset becomes more valuable.
The survey, commissioned by GE Healthcare, was answered by 10,000 participants from ten countries around the world including the US, China, South Korea, Brazil, Russia, India and the UK. The results hold the key to knowing in which direction to push research and development in the field of dementia testing.
The desire to find out if dementia is around the corner seems to stem from wanting the power to arrange one’s own affairs and plan the rest of one’s life accordingly. Some respondents also believed that an earlier diagnosis could grant them a greater degree of freedom to actively seek treatment, adapt their lifestyles and make better informed decisions about their own health. These attitudes were more prevalent in the UK, the US, and Australia. Personal experiences of dementia with loved ones was found to be more prevalent in those countries, which could explain the result.
Awareness of symptoms was another factor that the survey tested for. Most of those surveyed recognized memory loss (70% of respondents) and disorientation (61% of respondents) as symptoms of dementia. However, many remain unaware of several other symptoms indicative of early-stage dementia such as problems with language, and behavioral changes.
In countries where people had more direct experience of dementia (for instance, if they had a loved one who had been diagnosed), they were more likely to be well informed of the symptoms. This result explains why respondents from countries with higher incidences of dementia, like the UK, US and Australia, had a greater thirst for knowledge. This also explains why Indonesia, where the incidence of dementia is among the lowest in the world, showed little awareness of the symptoms of Alzheimer’s and Parkinson’s.
Ben Newton, Director of PET Neurology for GE Healthcare, commented, “It’s understandable that dementia is a frightening topic for people. That said, although there are currently no cures for many neurological disorders, there are symptom modifying therapies and approaches available if detected early enough. It’s interesting to note that the majority of respondents with more experience of a neurological disorder via a loved one for example, said that they would want to know, in spite of there being no cure.”
The pursuit of mindfulness
A better-informed patient may be a happier patient. The MIND (Make an Impact on Neurological Disorders) initiative spreads awareness of dementia by sharing patient’s stories and providing valuable information for patients, their loved ones and clinicians. The campaign also links experts on dementia from around the world to share their views and experiences. If the survey’s results are anything to go by, initiatives like MIND could be instrumental in helping people come around to the idea of earlier diagnosis.
Currently, most diagnoses are made when dementia is already advanced and patients have few remaining options. Beyond palliative care, little can be done to slow the progression of disease once it has taken hold. However, earlier diagnosis is allowing people to choose the best treatments for them, find the best sources of support, and make decisions about the future.2