‘I think the medical community is doing noteworthy work in Alzheimer’s but a lot more remains to be done’

Jane Swamy, Ex-Dean at Xavier Institute of Communications, was recently diagnosed with Alzheimer’s disease. Viveka Roychowdhury, recently interviewed her son, Michael Swamy, a celebrity chef, to know more about how her life changed and how they did not receive any needed support from extended family and friends

How did you first suspect that your mother wasn’t well?

It started with her forgetting little details at first like not remembering where she had kept certain everyday items, forgetting important days like birthdays, missing appointments, etc. She could not recollect certain memories from her past. Then the condition progressed and started affecting her work. She was the Dean at the Xavier Institute of Communications. She would walk into the lecture hall and start talking on topics completely different from what was in the syllabi. She would even forget if she had assigned work to her students in the prior class. This is when we realised that she needed medical assistance and tried to take her to a doctor but she was in denial for quite some time and was adamant that nothing was wrong.

What was your first reaction to the diagnosis of Alzheimer’s disease? Did you and your mother receive adequate counselling and support from your doctor?

By the time she went to see a doctor, we were sort of expecting her to be diagnosed with a neurological condition as she had been exhibiting the symptoms for quite some time. So her diagnosis did not come as a shock. The doctor prescribed her some medicines which made her drowsy and incoherent. We visited a counsellor too but did not find that to be helpful so we discontinued it.

How did your life change after her diagnosis? Did you find clinical support services to meet her needs as the condition progressed?

She was taking drugs for some time and then one day our family doctor told us that since Alzheimer’s is not a treatable condition, it would not make economic sense to pursue clinical services further. So, she continued taking medications that would keep her calm, and she needed someone to be with her constantly to take care of her, talk to her through the day and support her. We found this to be the best possible solution in the given scenario.

Our lives have changed completely since her diagnosis. My mother was always a very independent and self-sufficient woman and now someone has to constantly look out for her. And it is just the two of us in the family so I had to make many adjustments in my professional life to be there for her. My work requires me to travel a lot but I had to cut down on that. I also fly back home in-between assignments so that my mother’s caretaker can get breather from time to time because taking care of someone with Alzheimer’s alone can get very overwhelming.

How did the family, immediate and extended, react to the diagnosis?

Unfortunately, we did not receive the needed support from extended family and friends. Nobody came forward to help in any way so we were sort of left to figure out the situation by ourselves. I don’t know if our relatives and friends withdrew from our lives because of the stigma that is associated with Alzheimer’s. Their perception of who she was changed entirely after they learned of her disease and they avoided interacting with her. Initially those who would come to visit her used to act shocked and be morose, which did more harm to her than good. I want her to be surrounded by happy people who treat her with love and respect and cheer her up. That is what is best for her condition.

Do you think medical science is doing enough to diagnose and treat Alzheimer’s Disease? What would be your suggestions for doctors, pharma companies, governments and society at large?

I think the medical community at large is doing noteworthy work in Alzheimer’s but a lot more remains to be done. I think more research is definitely needed in the area so we can come up not just with a cure for the disease but also with better and more effective treatment to manage it. Most of the current medications for Alzheimer’s cannot reverse or stop memory loss and they make the patient very drowsy and sleepy all the time. We definitely need new and improved therapies in the area. Through my experience with my mother, I have found that it can be very taxing for a caregiver to take an Alzheimer’s patient to a hospital or a clinic. So, I think doctors treating patients with conditions such as Alzheimer’s should be open to coming to the patient’s home and treating him/ her.

(The interviewer is an ex-student of Jane Swamy)

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