One day, he missed the time of his favourite TV show. A few days later, he forgot the route to his most frequented bank. “It’s age,” we thought. Or did we? If I remember right, we mocked. Fast forward a few weeks more and he forgot to go for his walk, an activity he had engaged in daily, for 20 years, come rain, storm, hail.
Even as mockery of the situation started slipping away from our minds, close relatives would meet him and casually say to me, “Your father has gone bonkers”.
I don’t know why didn’t I confront that relative there itself. Was it stigma? I don’t know why did I not see the signs? Was it lack of awareness? I still have not figured out, why did I, the well-educated, well-travelled former journalist, not understand anything? Was it complete lack of the knowledge of warning signs?
It was too late by the time the MRI reports came. The neurologist remarked. “There is no cure of something like this and certainly, very difficult to even detect it at the right time.”
“What is something like this?” we asked the doctor.
He replied, “Dementia.”
What followed is still a blur in my memory. Did I and my entire family become numb? Helpless, almost paralysed? Yes. We tried everything that we could, to slow the progress of dementia, to somehow save him but could not.
He slipped away, faster than sand clutched in a fist. Very soon, we lost him. Was I relieved for him? Yes! I could not see him, an astute IAS officer, succumb to the failings of his irreparable brain cells.
But was my life the same? No! Never! I spent hours, years, endless moments of guilt.
Am I looking for sympathy or a “I am so sorry for your loss” remark? Not at all. All I am looking for is awareness, knowledge, early diagnosis, love, respect, care for those who are suffering, and for their caretakers.
I do not want anyone else to go through what I went through. I want to contribute to creating awareness about this silent, invisible disorder. In order to achieve this, I started an online campaign and within days garnered humongous support from strangers. Strangers, who, somewhere became cushions. Everyone turned out to be a caregiver. Everyone shared their stories.
For the first time, I did not feel alone. For the first time, I felt my anger at everything around me reducing. The stigma around brain’s illnesses needs to stop. It needs to be treated as normal as a heart disease or diabetes, so that people can come forward and talk about it and hope to get a treatment, or at least a respectable bought time and dignity.
India has a serious and growing problem of dementia, but it is neglected due to various reasons, the main one being a lack of awareness about its warning signs and diagnosis.
A neglected area
According to recent published figures, over four million Indians above 60 have the condition, which is around 3.7% of that population. Approximately, one out of every 16 households with an elder has someone with dementia. Yet, dementia remains a neglected area in healthcare, and many families do not seek or get suitable diagnosis or treatment for dementia symptoms. Dementia is normalised, it is accepted as a part of old age that is made fun of.
We just assume that they are forgetful or age is affecting their memory. If more kind people like you speak, we can tell the world that ageing is not an illness, dementia is.
Symptoms and points to note
If you notice your loved one is experiencing more than one of these symptoms, do not hesitate to consult with a physician. These re the common signs of dementia:
*Communication and Language An early symptom of dementia is having trouble communicating thoughts. Trouble to finish sentences, repeating themselves or not able to find the right words.
*Focus: Losing the ability to pay attention or have shortened attention span.
*Memory: Hampered short-term memory, such as forgetting where they put their house keys, difficulty remembering what day it is, or having difficulty paying bills.
*Reasoning and judgment: Struggle with their reasoning or problem-solving skills. This might include them making decisions without considering their safety or having trouble multi-tasking.
*Visual perception: Experience problems with visual perception such as having double vision, having difficulty seeing a contrast in colors.
While older people are more likely to get dementia, people in their thirties, forties and fifties can also get dementia.
Memory loss may not be an initial symptom in a person with dementia. It could be change in routine and normal behavioural patterns.
Institutions aiding patients of dementia and their caregivers
The Alzheimer’s and Related Disorders Society of India is the country’s largest group working to create a dementia-friendly society. It is present in 24 cities as a registered non-profit organisation. It provides medical and care support to people living with dementia and their families and caregivers who consistently need guidance.
Vayomanasa Sanjeevani s the centre for geriatric care at the National Institute of Mental Health and Neurosciences or NIMHANS in Bangalore, which is one of the oldest and most premier institutes on mental health in India.
Samvedna is a a not-for-profit old age care centre in Delhi. It’s main mission is early detection of dementia and mental health issues. It also have a free dementia support group for caregivers. It is conducting a free online health and memory screening camp for ages 50+, on September 27 from 10 am-5 pm.
Resource websites and materials
The Alzheimer’s Disease International site has reports, publications and resources that the organisation has produced, including their World Alzheimer’s Report. One can also find webinars, factsheets, booklets and previous Global Perspective newsletters here.
Dementia Care Notes, India contains resources, tips, caregiver stories for dementia caregivers.
The Alzheimer’s Society produces a wide range of publications and factsheets designed to support and inform anyone affected by dementia.
The World Health Organisation has a training and support manual for carers of people with dementia.
Payal Saxena has worked as a journalist with The Times of India and The Week. She is now a sanitation, hygiene, gender and health care expert in the social development space. Also working on maternal health care in Afghanistan.
September 21 is World Alzheimer’s Day.
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