There are an estimated 4 million dementia patients in India. The numbers seem to be growing with people living longer - and many people have a relative or know of saomeone who is affected by dementia. In India, it is usually family members who care for those who can no longer care for themselves - and this can be a very stressful part of their life. Now, the World Health Organisation, WHO, along with NIMHANS in Bengaluru and Stanford University is working on a study along with caregivers to see how their lives can be made easier when dealing with a parent who has become a willful child - or an older relative who needs to be cared for like a baby. This is after all the reality for millions of families around India.
Dr Santosh Loganathan, Additional Professor of Psychiatry in NIMHANS explained what dementia is. "Dementia is basically a degeneration of the brain. Normally when people age the brain degenerates very slowly, but in dementia this degeneration happens a little more faster. So, if you'd expect that a person at the age of 70 or 80 would start forgetting sometimes this forgetfulness can start right at the age of 50 or 60 and rapidly the degeneration involves many part of the brain and leads to various problems related to forgetfulness, memory problems, difficulty with all the basic activities that we take for granted. For example, bathing, toilet needs, eating - all of these can become of a big problem. So, in a sense, its basically a disease of the brain.
Dementia is actually a growing concern, especially so in India and many developing countries. If you look at the numbers, there are about 4 million people who actually have as per the Dementia India report. Many of them are actually living undiagnosed, not having access to professional care or medication. One of the reasons could be that a living longer, the longer you live, there's a more chance that one can actually develop dementia. People don't have an idea that one is having dementia because one of the commonest types of dementia is Alzheimer's dementia. And in Alzheimer's dementia, the memory problems often begin first. So if a person starts having memory problem, the people living with them can say that... most people believe it's the problem of age and he's forgetful."
Sheshadri K S told NDTV the challenges he and his family face. He said, "On a daily basis, taking care of my mother even though she's 70 years old. She acts like a baby, so you really need to have a person who has a lot of patience to literally take care of her, attend to her needs. Sometimes, she might cry like a baby sometime she might even go hanky-panky and start shouting at us just because we have not given her what she wanted. It could be a pencil, rubber, something like that which usually older people don't crave upon but she would definitely need that.
Aravindanath D M is looking after his father who has dementia and he has felt an impact on something as simple as going out and having a social life. "Everyone will have some kind of social stigma, what's happening, why is your father behaving like that? So much social stigma ...People will not mix with us, they won't invite us to any event. We also can't attend events because somebody should be there with him all the time."
But the pressure on the caregiver is not always considered - perhaps also because in India, looking after elderly relatives is just something you have to do. Dr Santosh Loganathan told NDTV, "The caregivers who live with people with dementia ...and often they are ones who actually care for them... If they don't have a clue about dementia and what the person is going through then this task of looking after them can be very exhausting, can be very tiring and sometimes, it can be very confusing because sometimes they don't know what to do. Often, many people don't know where to go for help.
The caregiver can really be burdened with lot of exhaustion and often it can lead to lots of stress which can later on lead to depression and anxiety also. So, it's important for caregivers to realize that they do require help in terms of managing their loved ones. And that they do require help for themselves at some point, they have to look after themselves also apart from looking after their loved ones."
The new study has involved caregivers who have shared the pressures that they face. The aim is an online portal that anyone in India can access for help that is truly relevant to the Indian situation. The study team is looking for people who could be a part of that study.
Dr Upasana Baruah, Research Associate said, "Currently, we are doing the recruitment ... we are still reaching out to caregivers who can look at the program and trying to see how effective it is. It's basically to see the effectiveness of this specialized portal in comparison to other online caregiver support that might be available currently. Once the effectiveness is seen, the study is completed, it will be available to whole public. The development of the program began almost a year ago. The program has been in development with inputs from experts. They were different experts who gave their opinions on what should be there for an online program for caregivers and then we had focused group discussion with caregivers and also with mental health professionals and they gave their inputs. Based on all these input and feedback on what an online program for caregivers should have, the program was developed. After that, it was pilot-testing, The generic program which was developed with inputs from experts all over the world was adapted to the Indian setting. So, we used examples which are applicable to the Indian population and also, various activities which are more generally found in India. And, with characteristics of people with dementia which is common in India, those were adapted."
The study is now in English only, but will be extended to Indian languages. The participants in the pilot study say they have already been helped by the information they have received.
Sheshadri said "They have given lot of examples and real scenarios which relates to my mother's behaviours - and it help us how to overcome those situations when she is not listening to us, how do we control her by not talking back to her but pacifying her."
Aravindanath said he had learnt he needed to look after himself. "As a caregiver, we also need lots of exercises, physical activities. We need to keep ourselves engaged to overcome this burden. All those things are covered in that online portal. It gives lots of answers to our questions. Especially managing myself, my anger and improving my patience level towards my father."