“We didn’t realise it was a major illness unless we started noticing behavioural changes in my mother about a year ago. She was just becoming very reclusive. Something like, “You are not giving me food” she would say, exactly 10 minutes after eating. She started getting very violent.
My dad, on the other hand, had forgotten regular movements like where to pee or to walk or so. Now, he can’t recognise anyone, including me. Both of them remember past events, but can’t remember recent events,” said Sachin Bhosale (name changed), their son.
This is a general testimonial that anyone dealing with persons affected with dementia will tell you. This is so because even today, while we talk so much about awareness, there is little awareness to pick the disease.
Alzheimer’s is the most common form of dementia and may contribute to 60 to 70 per cent of cases, says World Health Organization (WHO). Each year, World Alzheimer’s Day is celebrated with a theme. ‘Remember Me’ is the theme of this year’s World Alzheimer’s Day, which focuses on dementia.
According to Alzheimer’s and Related Disorders Society of India (ARDSI), a voluntary organisation that helps manage Alzheimer’s and dementia, 4.1 million people in India suffer from dementia and this number is set to double by 2030.
Experts said despite the rising numbers, there is a lack of care facilities in the country to help manage dementia.
Likewise, in case of Bhosale, the trouble didn’t end when they recognised the illness. In fact, it began when they tried searching for a centre to take care of them.
“But the real trouble started as we didn’t really know how to take care of them or where we could get proper treatment. My kids are studying and they wouldn’t be able to concentrate in studies at all. We needed a very reliable place to send our parents, because keeping them home wasn’t really possible for us,” said Bhosale.
Finding a day care or dementia care in the city is pretty difficult. “It’s difficult to find caregivers who can work with dementia patients on a long term basis due to their behavioural changes. It requires a lot of compassion and patience to understand the patient and behave accordingly. They also require regular counselling to deliver quality care,” said Prasad Bhide, who also runs a 24/7 Elder Care Home and Day Care for seniors, AARAMBH.
Domestic care can be an option for dementia patients, but most of the options available in India at present are not equipped to manage them holistically.
“Trained carers can help with counselling, engaging activities, physiotherapy and social aspects. A person affected with dementia needs a lot of care and attention,” said Sailesh Mishra, founder of Silver Innings, an assisted elder care home which has a special project named A1 Snehanjali for dementia.
“Dementia is going to be our biggest worry now,” said Dr Alka Subramanium, psychiatrist from Nair Hospital, Mumbai. “There is no specific unit for dementia, but we do have an OPD for geriatric care. Our erratic lifestyle can be held as a cause of dementia. If you have a healthy lifestyle, dementia can be prevented. Regular exercise, proper sleep and s balanced diet can prevent dementia.”
Some experts have pointed out that another key aspect in managing dementia is counselling the families of the patients.
Dr Sangeeta Ravat, professor and head of neurology, KEM Hospital, said, “It is very important to counsel the families and relatives of people who suffer from dementia. This is because they need to be very patient with those who suffer from this condition. They also need to realise that dementia cannot be treated; it can only be managed.”
What is dementia?
- Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and ability to perform everyday activities
- Though dementia mainly affects older people, it is not a normal part of ageing
- Worldwide, around 47 million people have dementia, and there are 9.9 million new cases every year.
- Alzheimer’s disease is the most common form of dementia and may contribute to 60–70% of cases
- Dementia is one of the major causes of disability and dependency among older people worldwide
- Dementia has physical, psychological, social, and economic impact on carers, families and society