New dementia research reveals overwhelming demand for “the value of knowing”

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Three out of four people would want to know what kind of neurological disorder they had even if there was no cure, according to new global research from GE Healthcare. An even higher percentage of respondents, 81%, would want to identify an incurable neurological disorder if it affected somebody close to them, with more women (84%) wanting to know than men (76%). The “Value of Knowing” global survey of 10,000 adults across 10 countries explored perspectives on incurable neurological disorders including Alzheimer’s and Parkinson’s.

Prepared to pay for diagnosis


While the overwhelming consensus (94%) is that the government or health insurance providers should cover diagnosis, approximately half (51%) of respondents indicated that they would even be prepared to pay for a diagnosis themselves. This sentiment was particularly prevalent in India and China, where 71% and 83% respectively, said they would be prepared to pay. This was echoed by almost one half of those questioned in Russia and around one-third of respondents in UK, USA and Japan.


“What these statistics tell us is just how strongly people feel about tackling neurological disorders like dementia,” says Marc Wortmann, executive director of Alzheimer’s disease International. “Worldwide, nearly 44 million people have dementia and this number is expected to nearly 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.”


When people surveyed were asked why they would want to know, the most common answer (71%) was to start treatment that could help manage the symptoms of the disease. Other reasons included the opportunity to change lifestyle to potentially slow the impact of the illness (66%), and the ability to make informed decisions (62%). Those who would not want to know cited undue worry and the futility of knowing about their disorder without being able to control it.


Ben Newton, director of PET Neurology for GE Healthcare, comments, “It is 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 is 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.”


Recognising the symptoms


The research also probed respondents’ recognition of the possible signs and symptoms of dementia. While a majority recognised memory loss (70%) and disorientation (61%) as signs of dementia, less than half of those surveyed were able to identify other very common symptoms, including language problems, personality, mood and behaviour changes, and loss of initiative.


Newton adds, “Understanding and knowing all the symptoms of a neurological disorder are critical to helping loved ones who may be showing early signs. Acting early on any concerns may mean patients have access to earlier diagnosis and intervention, which could help to manage and delay the impact of a disorder.”


For decades, GE Healthcare has produced diagnostics scanners, imaging agents and software to help physicians see more clearly inside the brain and aid better patient management. Between 2010 and 2020, GE Healthcare plans to invest over US$500 million in research into neurological disorders. The investment crosses all lines of GE Healthcare and focuses on developing new neurology diagnostic solutions, educating consumers, and expanding research already in progress. Target areas include diagnosing post-traumatic stress disorder, Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, stroke, concussion and traumatic brain injury.