Everyone writing tributes to Dr Jacob Roy Kuriakose, who passed away on Sunday in Kochi, mentions the pioneering role he took on in trying to beat Alzheimer's. Dr Kuriakose, aged 68 years, died of brain tumour, after dedicating long years of his life to finding a solution to Alzheimer's. He was the founder of the Alzheimer’s and Related Disorders Society of India (ARDSI) and former chairperson of the Alzheimer’s Disease International in London.
It all began when his father, a priest in an orthodox church of Kerala, was diagnosed with Alzheimer’s in the early 1990s. It was a time there was hardly any awareness about the disease in India. “He finally found that his father was suffering from Alzheimer’s and that led to the founding of the ARDSI in 1992. However, by profession, he was a pediatrician,” says Thomas Cherian, treasurer of ARDSI.
The organisation grew through the years with Dr Kuriakose’s tireless efforts. Twenty chapters of the ARDSI were formed across the country. The ARDSI tied up with the Alzheimer’s Disease International where Dr Kuriakose would later become director, vice chairperson and finally chairperson. After his term ended, he came back to India and became a patron of the ARDSI.
“He travelled all over the world to get information on Alzheimer’s and disseminating it in India. Full-time care centres were opened in Kerala in Thrissur, Ernakulam and Kozhikode. A daycare centre was opened in Tripunithura. We also tied up with the state government and have been working on a project under the Kerala State Initiative on Dementia,” Thomas Cherian adds.
Psychiatrist CJ John, who was present at the first national conference of medical experts that Dr Kuriakose had called to discuss how to deal with dementia, says people had very little awareness about the disease back then.
“He took up the cause at a time when Kerala was not bothered about the miseries of caregivers of dementia and people suffering from dementia. He took up the lead in initiating a movement for that. In the 1990s he realised that there was a community need for such a movement. It was not just service that the organisation did but also some good research. He is one of the few men who took on a family loss and initiated a movement out of it to help others going through the same loss. Another man I know who did this is G Vijayaraghavan who founded the National Institute of Speech and Hearing after his children were born with hearing disabilities,” Dr John says.
The idea to start the ARDSI came when Dr Kuriakose learnt about research and care centres available abroad, says Dr S Shaji, who began working with him since 1992. “He said, why don’t we start something here, and that’s how the ARDSI was formed. The first building was in Mulanthuruthy in Ernakulam where his father had a place. It was a centre for community, mental health and dementia. We conducted a survey in Thiruvaniyoor panchayat in Ernakulam and identified patients with the condition. A study was published in an approved journal,” says Dr Shaji.
The activities grew. Mobile aid was taken to patients’ home, to provide care, schools for children with mental health issues were started, daycare centres were started, support groups were formed, healthcare workers were trained.
“All of this happened through the non-stop efforts of Dr Kuriakose. He would work continuously, hardly sleep for three to four hours a day. All that we now know about the disease, you can credit Dr Jacob Roy Kuriakose for his efforts for making the public so aware. In 1992, when we called a press conference to talk about Alzheimer’s disease, there was hardly any media interest. Now for Alzheimer’s Day and every so often, there are so many media reports coming. The awareness has spread so much," he says.