No memory lanes here

FOR Gopika’s father who passed away in July, memory of his daughter was fleeting. He was accustomed to her face and her company during the weekends when she engaged with him at the Dementia Care Centre run by the Alzheimer’s and Related Disorders Society of India (ARDSI).

He was perhaps constantly reminded by people around him and her frequent presence that she was his daughter.

File Photo: Person with dementia at the Comprehensive Day Care Centre in Kochi engaged in an activity.
The institutionalised day care centre was closed following the pandemic

A school teacher, Gopika’s work from home schedule was tedious during the last one-and-a-half years with the Covid 19 pandemic. When she had reached Ernakulam from Kollam on a transfer, just a few months before the pandemic started, she was on a look out for a support system that would help her with taking care of her father.

Dementia Helplines: 9846198471, 9846198473, 9846198786

Alzheimer’s and Related Disorders Socieity of India

Her aging mother was increasingly finding it difficult to cope with her husband’s changing behaviour. It was difficult to accept that he was no longer the person she had known all her life for he no longer knew many things which were considered normal for an adult person. Dementia had set in and it had gradually changed him from the person he was! His memory loss was about 80% when Gopika found professional support through ARDSI’s Dementia Care Centre.

Gopika’s father was among those who had succumbed to the complications of Covid 19 after many at the Care Centre got affected in the second wave.

The Dementia Care Centre was not just a support system for Gopika, it was a new learning curve for her to take care of people who have no memory. “The atmosphere, nursing care and the general attitude of the staff was something that was so comforting”, says Gopika. The centre that has facilities to accommodate ten people.

“It is tough for the family as they find their loved ones’ memory degenerating and slowly changing every aspect about them”, says Paul Davis, co-ordinator and a trainer of care-givers at ARDSI’s centre.

The first ever day care centre for people with dementia in India under ARDSI had come up under the leadership of the late Dr K. Jacob Roy, in 1997.  He has set up ARDSI in 1992, when the disease condition was little known. The Comprehensive Day Care Centre, which was a model on which the Government of Kerala started the dementia care centres, had to be closed down because of the pandemic.

It had been a struggle back in the 1990s to create awareness about the disease. However, even now, when there is much awareness about the disease, there are several thousand people in the population who are struggling to cope up with the condition. As dementia advances, the family and most importantly the care giver is the worst affected.

“In every other disease, the patient suffers physically and mentally, but in case of Alzheimer’s disease, the physical and mental condition of the care giver takes a toll, since the person with dementia simply does not know what is happening to him or her”, says Mr. Davis. That is why training the care givers is most important, he adds.

With no day care centre, many families of people with dementia who were availing of the services provided by the Centre had to deal with difficulties personally. With the routines busted, quite a few had been trying to making their own homes dementia-friendly.

It is difficult to appreciate the various ways in which one has to make the place dementia-friendly and the needs of each person are unique, says Mr. Davis.

  • To begin with, there should be a care plan for each person with dementia. One has to start with removing the locks on the doors of the rooms and bathrooms. The person may not remember how to open it!
  • Labelling various spots in the house is important – to indicate where is the toilet or the kitchen in a language that the person with dementia understands.
  • It is important to remind them and also ensure that they use the toilet every two hours.
  • They might be sitting with food on their plate but they need to be told that it should be eaten. They may also argue that they have not been given any food. But there is no point in arguing back. The situation needs to be managed.
  • Many persons with dementia may be quite healthy physically. Slipping out of the house alone and getting lost is one of the major problems faced by families of such people .
  • Keeping a piece of information about their identity and contact number written on paper inside their pockets or pinned into the dresses is a way to help them not getting lost.
  • Since they have no comprehension about roads, usually they are found walking in the middle of the road. They would get into any vehicle if someone asks them to do it. It is also important hence that care givers ensure that they do not wear any jewellery that endangers them.

Getting help is important and but this is where the social stigma becomes a hurdle, says Mr. Davis. Families do not let others in the neighbourhood know about the condition of their family member.

People with memory loss are usually stressed while communicating with others and mostly those interacting with them could be inadvertently triggering a faster progression of the disease. The supportive care has to begin early so that the progression can be slowed down, says Mr. Davis.

Numbers of people with dementia to double

Even though the total numbers of people affected with dementia is not known, these numbers are going to be doubled in about ten years, says Baby Chakrapani P. S., director, Centre for Neurosciences, Cochin University of Science and Technology. A community-level programme Udbodh was launched over three years ago to understand the spread of the disease.  

A study covering all panchayats in Ernakulam got caught up with the lockdown and restrictions of the pandemic. However, with Government support, the study could soon be submitted, believes Dr. Chakrapani. His team had found from samples of 100-150 peoples in several panchayats that there were about 10-15 people affected with some kind of dementia There has been no assessment on the total numbers of people affected by dementia in Kerala or for that matter anywhere in India, says Dr. Chakrapani, who is leading the study, which is on its last leg.

All types of memory loss could be termed dementia, but not all dementia is Alzheimer’s disease. There are various conditions like diabetes, thyroid condition, Parkinson’s disease that triggers dementia, though 70-80% dementia is because of Alzheimer’s disease.

Recent memories are affected first. They may then forget their own children or their living premises. They may remember only their childhood and perhaps the wanderings could be to locate the house of their childhood, says Dr. Chakrapani.

A free mobile application named Prajna was also developed by the Neurosciences department and the Deen Dayal Upadhyay Kaushal Kendra in the University that will be available on both Android and iOS platforms to help people access care for dementia in the district. The app is set to be launched on September 21, 2021, to mark the World Alzheimer’s Day.

A day-care centre is one of the projects under Prajna that will be implemented by Kochi Corporation and the Satya Sai Trust Foundation.

It would be a step towards making the district dementia-friendly, says Dr. Chakrapani.

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