Assam: Alzheimer’s patients suffering due to lack of dedicated vaccination system

The pandemic has been tough on people from all walks of life. One could argue that last year, it impacted the marginalised communities and the elderly the most. But in the second wave, it has left no one. It has made matters even worse for people who find life to be tough even without a pandemic. In recent years, Guwahati has seen a sharp rise in degenerative diseases such as Alzheimer’s disease. Families affected by these illnesses are now facing another ordeal – getting their family member safely vaccinated against COVID-19.

Alzheimer’s is a progressive disease that destroys memory and other important mental functions, and patients in their advanced stages are often dissociated from reality. This puts them at high risk of contracting COVID-19 due to their inability to follow safety protocols at all times, especially at vaccination centres that offer no special provisions for them.

“Although Dementia cases are rising very rapidly, till now no specific data is available for Guwahati. According to the Dementia India Report 2010, four million people are affected. However, this is just the number of reported cases, and a good number of cases go undiagnosed due to lack of awareness and neglect towards the old age population. In the field, we come across many cases regularly based on which it can be clearly said that dementia cases are increasing,” said Debastuti Baruah, a geriatric Psychologist and co-founder of Aakuali Care Services, a city-based organisation working in the area of mental health issues of the elderly.

Guwahati residents are now either having to queue up for hours or seek the help of “influential connections” to safely vaccinate their family members afflicted with progressive illnesses, while another set of people are unwilling to visit vaccination centres at all due to fear of contracting the virus.  

“I had to wait in line for over two hours at a private hospital to get my husband vaccinated,” said 57-year-old Minakshi Saikia, whose 67-year-old husband is an advanced Alzheimer’s patient and struggles with incontinence issues. Despite multiple pleas, there was no consideration to vaccinate her husband on priority. “We need a vaccination system in place that is convenient for people who have progressive or chronic illnesses. As it is we have to deal with so many challenges at home regularly. The government should at least consider the senior citizens,” she added.  

For Kaustabh Mazumdar, however, the vaccination procedure was a smooth one. Mazumdar managed to get his 82-year-old mother vaccinated at a private hospital without any trouble, thanks to an “influential connection”. Although the vaccination process wasn’t a hassle, taking her to the hospital was no easy affair, as Mazumdar’s mother, who is an Alzheimer’s patient, is recovering from a stroke she suffered last November. 

The troubles don’t end here. A handful of these Alzheimer’s-affected elders have their children living away from home, making it even tougher for them to make arrangements for parent’s vaccination, booking slots, arranging transport, and post-vaccination care. 

Take the instance of Abhishek Ray, 47, who works in the educational sector in Kolkata. Both Ray and his brother are based out of Guwahati, and vaccination arrangements for their 75-year-old mother had to be made over a series of phone calls. 

“My mother lives alone, and her forgetfulness is increasing by the day. I managed to arrange for her vaccination with the help of my cousin, but she missed her appointment, due to her failing memory. Fortunately, there was a slot available the next day,” said Ray. “I had to coordinate with my cousin to get her vaccinated. We are fortunate that we had help, otherwise, this would have been an extremely difficult task,” he added. 

Those living away from home are also sceptical about travelling to their hometowns for their parents’ vaccination as it would mean risk being carriers of the virus. At this point, they ask: is home vaccination a possibility?

Dedicated time slots 

The older age of most Alzheimer’s patients makes them especially vulnerable to complications from the virus, which makes it pertinent for this group to be provided with dedicated time slots or specific days for vaccination, stresses Baruah. 

“People with Alzheimer’s have difficulty following instructions and are unable to remember any information. In such a case, ensuring the use of a mask, sanitiser, waiting in line or social distancing, is extremely difficult,” Baruah added. Her organisation is currently working with over 50 families with issues such as Alzheimer’s, Parkinson’s, depression, and loneliness.

“Also the current process of vaccination is very stressful for a person who fails to understand why they are there in the first place. So the process should be made dementia-friendly and elder-friendly by allocating specific hours in a day, or the best-case scenario would be to provide vaccination at home,” she further said.

Door-to-door vaccination

Meghna Choudhury, 32, whose mother suffers from Parkinson’s disease, is sceptical about taking her mother to a hospital. “We are scared to take her to the hospital for fear of exposing her to the virus. We tried checking if someone could come home to vaccinate her, but we were told that it wouldn’t be possible,” she said.

Government officials say that a mobile vaccination has been “under active discussion” for a while. However, according to a recent PTI report, the Centre has ruled out in the Supreme Court door-to-door vaccination of people and said the inoculation will be done at identified COVID Vaccination Centres, both government and private, registered on COWIN for “good, germane and rational reasons”.

The PTI report stated that “maintaining protocol of observation of every beneficiary for 30 minutes after vaccination is not possible, as each household may have one or two beneficiaries and it may not be practically possible for the vaccination team to spend more than 30 minutes in every household”, adding that this will delay the entire vaccination drive.

Commenting on mobile vaccination, Munindra Nath Ngatey, Director, Health and Family Welfare; and nodal officer for vaccination, said, “I have been getting many queries regarding vaccination of people in their homes. However, so far we haven’t received any guidelines to be able to do that. But elderly people, or those with mobility issues, can be vaccinated in their vehicles itself.” 

Ngatey also stated that people with Alzheimer’s and other progressive and chronic illnesses will be given priority in vaccination centres, upon request.