The only national dementia helpline number in the country is 0484-2808088. And the callers are from everywhere. Assam, Jharkhand, Rajasthan, Tamil Nadu…the list goes on.
Usually, callers are helpless caregivers wondering how to manage patients at home. Incidentally, caregivers could be wife, husband, or children of the patient.
“Understanding dementia and taking care of dementia patients become a tall order without proper support,” says Latha Joseph, administrator at the Alzheimer’s and Related Diseases Society of India (ARDSI). Ms. Joseph handles calls from other States.
“Whenever the media reports awareness campaigns about the illness, the number of calls goes up. It indicates that people are still unaware of the malady,” she adds.
Incidentally, over 200 calls are handled by the society every month (on week days from 10 a.m. to 4 p.m). Moreover, there are callers who come to know about the society thorough day-care and dementia care centres in the State. Other ARDSI helpline numbers are 9846198471, 9846198786, and 9846198473.
“Since it is a disease that mostly hits the elderly, callers usually ask for caregivers, as sending elderly people to day-care facilities is considered stigmatic,” says Ms. Joseph. However, rarely do people realise that caregivers require as much support as dementia patients, she adds.
“We help them [caregivers] by directing them to ARDSI centres, or ask them to meet a neurologist and also get feedback from them on their visit to the specialist. This helps us update our data on neurologists who are inclined to offer treatment to dementia patients,” says Ms. Joseph. “That is just the medical side. We also counsel them on care-giving aspects, as the experience could be rather traumatic,” she adds.
The Social Justice Department, which had opened the first-of-its-kind dementia care centre at Edavanakkad in May 2015 with technical support from ARDSI, runs a day-care centre in Thrissur and is planning to open two more centres in Thiruvananthapuram and Kozhikode by the end of the year.
Dementia care is fund-intensive, but the department has enough funds to support initiatives, according to a senior official of the department. Incidentally, the idea of setting up dementia centres along with old-age homes could not be executed owing to absence of specific infrastructure.
A project to house 10 dementia patients 24x7 approximately requires Rs.18 lakh a year, which include salaries of nurses, caregivers, food, and medicines. “We are looking forward to taking the project ahead with support from various quarters to create infrastructure,” the official says.