Every day, Maya Sahadevan has to beg and plead to get her mother into the bathroom for her morning bath. "When she does go in, she just sits there, staring at the ceiling, and often walks out without having had a bath," says Maya, 40, a private tutor in Mumbai.
It may not seem like much, but for Maya, the daily battle over the bath is a sign of further deterioration as her 69-year-old mother slips deeper into her dementia, her personality changing, her memories fading, and simple everyday tasks becoming insurmountable hurdles.
Maya’s mother was diagnosed with dementia four years ago. "Our first clue that something was wrong was in 2012, when she started saying the same thing again and again," she says. Maya took her to a psychiatrist, where she was diagnosed with dementia. She now spends most of the day sleeping, or staring.
"We stay home with her all the time," says Maya. "It’s hard to juggle housework, my afternoon tutorial classes, and also try and care for her." Lately, the Sahadevans have been looking for help, but it’s been a frustrating search.
Dementia — an umbrella term for a wide range of degenerative mental conditions, the most commonly known being Alzheimer’s — causes long-term loss of the ability to think and reason. Patients need constant supervision, and specialised care. Even in megalopolises like Mumbai and Delhi, such care is almost impossible to find.
"Ideally, a person with dementia should have access to trained caregivers who understand the disease and its patients’ behaviour. This is hard to find in India," says Mona Mishra, a counsellor at dementia care home Snehanjali.
In Mumbai, for instance, there is just one day care centre for senior citizens with dementia, run by the Dignity Foundation. And there are just two residencies — Snehanjali in Nallasopara, which can accommodate 13 people, and Dignity Lifestyle, which can accommodate 24.
Delhi has one day-care centre and one home. "We currently just have four facilities across the country — two in Mumbai, one in Kochi and one in Bangalore. That is far too low," says Mona. "More needs to be done by NGOs and the government, to spread awareness about dementia and provide affordable care infrastructure."
There is little support for the families of those with dementia either.
"We need more awareness camps to help family members understand the disease and learn how to care for their loved ones. The importance of such awareness cannot be overemphasised," says Sailesh Mishra, founder and director of Silver Innings Foundation, an NGO that works with senior citizen and runs the Snehanjali dementia residency home.
"This becomes especially important in a country like ours, where there are not nearly enough residencies and where the cost of those that do exist is also not affordable to all."
According to the Alzheimer’s and Related Disorders Society of India (ARDSI), nearly 3.7 million people in India suffer from dementia — a number that is set to double every 15 years. "The disease is not curable, but certain lifestyle modifications like engaging in physical activities and cognitive tasks; eating right; socialising and managing stress can delay onset of the disease," says Dr Manjari Tripathi, president of the Delhi chapter of ARDSI.
Poor awareness and the stigma that still attaches to mental disease adds to the problem, says Alka Subramanyam, assistant professor of psychiatry at Mumbai’s government-run Nair hospital, which runs a memory clinic that offers testing and offers counselling to patients and their families. "We definitely need more care infrastructure. The lack of it accounts to a great loss, either direct or indirect, to caregivers."
With little to no infrastructure available, caregivers suffer almost as much as the patients, says Sailesh. "It is hard enough to cope with the fact that a loved one is no longer in control of themselves. It is even harder to then try and care for that person by yourself, while also juggling the demands of children and earning a livelihood."
Even those lucky enough to find full-time care must find a way to pay for it — an average of Rs 45,000 a month. A residency charges Rs 30,000 a month, excluding the cost of medicines. In the absence of a residency slot, a trained caregiver costs Rs 800 to Rs 1,000 per eight-hour shift.
"A few Facebook pages are trying to spreading awareness and share information and tips on dealing with dementia in loved ones," adds Mishra. "But it remains a lonely struggle."
The Sahadevans from Mumbai are currently in the midst of that lonely struggle. "We considered leaving my mother at a day care centre for seniors with dementia, but haven’t yet been able to find a slot in the city," says Maya. "We are so confused; we don’t know where to go or what to do and it’s not just taking a toll on us, but also on Ma."
(With inputs from Rhythma Kaul)