September 21 is observed as World .. Day to promote global awareness about Alzheimer and other dementia diseases. Health Analytics Asia convenes its roundtable – Let’s Talk – Coping with Alzheimer’s – an attempt to understand the condition better, and also getting the perspective of a caregiver to dementia patients.
By Health Analytics Asia
It is a condition that has affected over 7 million people worldwide and has caused over 1.6 million deaths in 2019. In India, the figures are staggering with more than five lakh people affected and more than one lakh deaths in 2019. Alzheimer’s Disease – it is a condition that causes a progressive neurological disorder, that continuously affects his or her mental faculties -because the brain cells die and the brain begins to shrink. Even regular daily activities become a challenge, as the person’s memory is challenged along with his ability to comprehend, respond and infer.
While the disease challenges the patient a lot, the family of the patient – the caregiver faces extreme challenges – ranging from not understanding what is happening to their loved one, to having to deal with their behavioural changes from benign, to sometimes even violent. On World Alzheimer’s Day, at Health Analytics Asia’s roundtable – Let’s Talk – Coping with Alzheimer’s – we made an attempt to understand the condition better, and also getting the perspective of a caregiver to dementia patients.
What can be done about it ? Dr. Debanjan Banerjee, Consultant Old Age Psychiatrist, says, “Mild cognitive impairment that precedes the Alzheimer’s stage where a lot of things can actually be done to manage the illness, but is often missed. If we detect it early, can we do something about it, yes! But it depends on when exactly you are detecting it. In the MCI stage people are able to do everything on their own – they have to put in more effort.”
Breaking the news of this condition to the family is very tough. Dr. Jayashree Dasgputa, Co-founder & Project Director at Samvedna Senior care and a clinical psychologist says, “One of the biggest challenges really is accepting the illness. The biggest challenge is for families to understand what is happening with their loved one.”
Anupama Suresh, whose husband was afflicted with Frontotemporal Dementia (FTD), at a very young age narrates her struggles on coping. “ It took seven years for me to understand what is happening with my husband. He was 42 when the symptoms started. He used to keep asking me the date, and I used to get irritated. A Chennai neurologist asked me to get a PET CT done. I got it done. there it was written Suspected Alzheimer’s”.
The response of the caregivers range from anxiety, helpless, frustration to anger. Says Payal Saxena, writer, caregiver to an Alzheimer’s patient and now someone who is actively campaigning for awareness online, “My biggest challenge that I faced then, and facing now, is anger. Initially I was angry at him, and now am angry at myself. Why did I not understand what was happening to him?”.
Dr Dasgupta advocates being in touch with people who have been in the caregiving journey and learning from their experiences. She says, “I always tell caregivers this, listen to everyone you can – who has gone through this journey and build your toolbox. Some might work on a day and might not some other day. It is really important to share, connect, see what others have tried.”
Caregiving can become more difficult when families and close loved ones behave in a way that you do not expect them to. Says Anupama, “I had no support. His own brother one day said he cannot take care of him for half an hour that she was away because – he was scared.”. Payal adds, “Closest relatives used to make fun of him. One relative met him and said, “Oh, he has gone bonkers”. Even now when I hear that word, it acts as a trigger.”
Despite being an irreversible condition that it is, Dr. Banerjee says Alzheimer’s can be prevented. He says, “Alzheimer’s can be prevented. There are a number of lifestyle factors – the Lancet Commission has brought out its report that says there are twelve modifiable risk factors – air pollution, obesity, diabetes, high BP, high cholesterol, hearing loss, lack of social activities, having an idle brain, sedentary lifestyle, and if you see, all of these are linked to urbanization. If blood pressure is not in the optimal range, it can lead to many small strokes in the brain, which can further aggravate the course of Alzheimer’s.”
Prevention is of course, better than cure. But there are a number of things that can be done to alleviate the suffering and manage the condition better. Prevention, early detection, picking up early warning signs, seeking help at the first instance of trouble, and being in touch with a group of caregivers – all this can make the suffering lesser and the caregiving relatively easier.
It is important to remember that your loved one has no idea what is happening to him or her. Your support and love is all that they need.
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