THE BEGINNING OF CNA

Dear Friends,

Cognitive neurology in this country has grown over the last two decades. Initially started by a few interested and trained neurologists, it has now spread across the country.

From the inception, we faced several hurdles. There were lack of culturally validated tools for Indian languages, lack of trained neuropsychologists, speech and language pathologists, apart from the difficulty of gathering support from the community. We have overcome some of these difficulties due to some invaluable work by our friends and colleagues. Throughout the past two decades, we have amassed considerable insights regarding the disease burden in this nation through a multitude of epidemiological studies conducted. Harnessing societal support, and support from NGOs could be achieved by this group of committed cognitive neurologists. However, substantial efforts must be dedicated to person living with dementia (PwD) and their caregivers. As PwD require management by cognitive neurologists, it is imperative that these specialists take the lead in orchestrating a comprehensive team to provide care and support to PwDs within the community.

India would experience a steady rise in number of cases of PwD in coming years due to population growth coupled with increase in life expectancy. There will a threefold rise of prevalence of dementia by 2050, thus from an estimated 35 million cases in 2019, it is projected to become more than 150 million in 2050. However, only 10% of patients of dementia in this country get a diagnosis in their lifetime. This is because of ignorance about the disease in the community and dearth of trained physician to manage them. Although, dementia is being managed in the country by psychiatrists, geriatricians, physicians and GPs, this group of diseases need a cognitive neurologist for better evaluation and management. Number of neurologists are increasing but most of them are based in urban cities. Needless to say, India needs more trained cognitive neurologists to provide care for the rising number of dementia patients in coming days. We need to train neurologists on cognitive neurology and spread awareness about the disease in the community.

In last two decades a significant advancement has happened in our understanding of diseases like AD, FTD, DLB/PDD, etc. New diagnostic criteria have emerged incorporating biomarkers for an early and accurate diagnosis of these diseases, especially AD. Many anti-amyloid agents have undergone clinical trials and despite initial failures, some ray of hope is emerging with recent accelerated FDA approval of aducanumab and lecanemab. Similar progress is also on the card targeting alpha-synuclein, tau and TDP-43. In coming days, the cognitive neurologists will have several molecules for treating various dementing illnesses. Going by the complex pathophysiology of these diseases it appears that multiple agents targeting different patho-mechanisms would be used for treating these diseases like in cancers and some of the infectious diseases.

We still do not have modern diagnostic tests available in our country including CSF and imaging biomarkers even in metro cities. But, as new drugs are becoming available and soon to be introduced in the country in next few years, we expect, market will also be flooded with facilities for biomarkers. We therefore need to be prepared to use them judiciously. Cognitive Neurologists need to lead and provide guideline, convince the policy makers for regulation of use of these advanced therapies for patients of AD and other dementias. Moreover, once these therapies get through the regulatory clearance, these need to be tested in our population before being launched in the Indian market. Our preparedness is thus needed to be part of these trials as well.

Imparting teaching and training neurologists and other physicians are also an important task for the cognitive neurologists. Number of DM and DNB in neurology seats have increased manifold in last few years. However, proper training of these students on cognitive neurology and motivating these budding neurologists to take this sub-discipline as their career is an important task bestowed on us.

“Unity in diversity” is the essence of India. There is diversity in genetic make-up, languages, food habits, cultural practices, etc. We need to look into these diseases in our country and study the differences from others in the world. We also need to find India specific solutions for these diseases. There are ample scopes for research in this field. Huge number of PwD from diverse population in the country provide ample opportunity for collaborative research. Collaboration amongst cognitive neurologists as well as radiologists, basic biologists, geneticists, etc. would help in fostering research. In coming decades, we believe, Indian cognitive neurologist can lead the research in this region and the world.

Therefore, we are at the crossroad, we must take our next step forward to form an association to help achieve our goal. We think time is appropriate to form an association of cognitive neurologists in this country.

Our Goals:

To impart teaching to students of neurology and other physicians on cognitive neurology

To impart teaching to students of neurology and other physicians on cognitive neurology

To carry out collaborative research in the field, and leading the collaboration. For some rare disorders we may form an Indian Consortium, as happened in Europe, and China

To formulate guidelines for diagnosis and management for various dementia in the country

To lead the group in the community for building support for treatment and care for patients

To influence policy-makers through advocacy

We have a Cognitive Neurology subsection in the IAN and most of us are members of the subsection, but it has its limitations. Many subspecialities of neurology have grown and created separate society or association like Stroke, Movement Disorders, etc. These societies have the scope to involve other stakeholders to help achieve their goal. Given the magnitude of problem, and management and care of dementia requiring engagement of neuro-radiologists, neuropsychologists, speech and language pathologists, as well as care-providers and social workers, whom we cannot include in the subsection, we must need a separate association.