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 (AD) and Parkinson’s (PD).
“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.”
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,” said 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 ages1. 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.
Dr. 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.”
Recognizing the Symptoms
The research also probed respondents’ recognition of the possible signs and symptoms of dementia. While a majority recognized 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 behavior changes, and loss of initiative.
Dr. Newton added, “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.”
Dementia: The Facts
- There are more than 450 million people living with neuropsychiatric and neurodegenerative disorders.
- There is currently no cure for dementia.
- Every four seconds a new case of dementia is diagnosed.
- Worldwide, 44 million people are living with dementia – and this number is set to double every 20 years.
- Dementia is a term used to describe different brain disorders that affect memory, thinking, behavior and emotion.
- Early symptoms of dementia can include memory loss, difficultly performing familiar tasks, problems with language and changes in personality.
- Alzheimer’s disease is the most common cause of dementia. Other forms of dementia include vascular disease, dementia with Lewy bodies and fronto-temporal dementia.
- The worldwide costs of dementia exceeded 1% of global GDP in 2010, at US$604 billion. As a result, if dementia care were a country, it would be the world’s 18th largest economy. If it were a company, it would be the world’s largest by annual revenue.
Earlier this week I featured ADM Diagnostics, ADMdx is commercializing proprietary brain image analysis software to enable early, more accurate diagnosis of Alzheimer’s Disease and other brain disorders including dementia. By applying proprietary pattern recognition advances and a unique database of more than 6,000 brain images, we have been able to differentiate between various forms of dementia, predict rates of cognitive decline even in normal subjects, and detect drug effects on the brain. They are applying their technology in drug trials for pharma companies, and are developing software to aid in patient diagnosis in the clinical setting. Value for pharma is through earlier, more informed go/no-go decisions and in improved clinical trial success rates. Value in the diagnostic setting is through earlier, more accurate diagnosis, patient prognosis, and appropriate treatment, particularly as new drugs become available. ADMdx is the first to take this holistic approach to creating a badly needed automated tool that incorporates advanced analysis technology, multiple sources of image data, the retrospective clinical outcomes of those patients, and the expertise of multiple leading centers in dementia evaluation and treatment.