CHENNAI: Small bits of information gathered from the internet are enough to make Janani’s day after a long day of trying to teach her 48-year-old best friend simple things like places.
The world under her feet collapsed the day Janani was informed that her best friend of 22-plus years, Karthika, has been diagnosed with Alzheimer’s syndrome. Karthika was her biggest support system and one who had stood by her through a failed marriage and a bitter family dispute over property.
“Not a single person I knew had Alzheimer’s. I didn’t know where to begin looking to understand what was going to happen. I didn’t think people her age could even be diagnosed with it,” says Janani who considers Karthika as family.
It has been two years since that phone call, and now, Janani wears the tag of a ‘caregiver’ for Karthika. She jests that it was a lot of Google searching than soul searching that gave her the insight into how the situation should be handled.
“I found an international forum dedicated to Dementia and started posting queries on their wall on a regular basis, seeking members’ advice on the ideal diet, care and routine for a patient,” she says.
Like Janani, many caregivers need community involvement, especially the aid of other caregivers to both cope and understand the intricacies of Alzheimer’s. Famously stated in 2005 Malayalam film Thanmathra, which portrays the life of a brilliant middle-aged man struck by Alzheimer’s, the ‘treatment’ is never only for the patient themselves, but also for their caregivers who keep it all together.
Caregivers are often caught between stress, depression and fatigue, as their world is quite drastically altered when a loved one is diagoned with this degenerative brain condition.
A staggering 4 million people suffer from dementia in India, of which a majority are Alzheimer’s patients. Chennai alone contributes to 2.7 per cent of the number according to a national statistic. But what the statistics do not include are family members that spend their lives playing guide and teacher to a vague mind, as the the expectant lifespan of a patient is 8-12 years.
“What we need is not just counselling but education,” says Harshita, a counselling psychologist based in Bengaluru. “Caregivers should be educated about several paradigms beyond the illness itself. They need to taught about behavioural manifestation, how one can help the patient on a routine basis, what kind of behaviour should one expect from them and how to address the issue with children at home. At the same time, community involvement also plays a larger role in giving caregivers an essential extension of support. Online discussion groups and support group meetings are also good platforms in facilitating the necessary dialogue.”
In major cities in India, many Alzheimer’s support groups have come up. “In the last few years I have been able to find good conferences on Alzheimer’s in India. I was able to find a good network of help for my friend. I have even made a couple of good acquaintances through the network. But there are tough days when she doesn’t recognise anyone and doesn’t respond for hours. That’s why it’s sometimes therapeutic to find another person who understands the situation and can give you good advice,” Janani adds.
Resources on Alzheimer’s are available through portals like Alzheimer’s and Related Disorders Society of India (ARDSI) and Dementi Care Notes.