There are times we get anxious when we misplace something or find it difficult to recall names. We wonder what could have been the reason for such instances of forgetfulness. Now imagine the plight of Alzheimer's patients who are unable to differentiate between day and night, cannot recognize their own children, and behave like children in their old age. Cinto, administrator of Kerala's only full-time dementia care centre at Edavanakadu in Ernakulam, which cares for around 15 Alzheimer's patients who live in their own dream world without any connection to anything going on around them speaks to Manorama Online on Alzheimer's Day.
Edavanakadu has the only government-level centre for dementia patients in Kerala. Are the number of patients very high?
Along with dementia patients, we also have geriatric care. Out of the total 19 people, except for five members, all of them are suffering from dementia. It is the only government-aided institution for dementia patients in India. Kerala State Initiative on Dementia Smritipatham (KSID) is a follow-up project jointly implemented by the Department of Social Justice and ARDSI, Government of Kerala. The head of this institution is the superintendent. Those who come here stay here until their children take them back or until they die. Their expenses are borne by the government.
Unlike normal patient care, caring for dementia patients requires a little more patience. Not all patients are equally affected. How is the patient care?
Personal care is essential for most individuals with dementia. A 15-member team comprising of a specially trained doctor, social worker, nurse, caregivers, administrator, and superintendent serves here to ensure the best quality care by creatively addressing the physical and psychological changes manifesting in the patient at every stage of the disease. As it is the only full-time care center in Kerala at the government level, people from all districts reside here.
Also, caring for dementia patients can be very expensive. It has been proven that providing them home care with the aid of a home nurse won’t be effective. Only those who are specially trained in this field can take care of them. Therefore, the amount demanded by such persons will also be higher. Fees in a private dementia care home can be higher than those of a typical private care home. It is in such a situation that this institution is relevant. All the services here are absolutely free.
When care is given without adequate knowledge or expertise in this field, it can cause more harm than good. In such situations, even the caregiver might display changes in their behaviour. This can easily disrupt the peace of the family. So in effect, when this centre is taking care of a dementia patient, they are also inadvertently supporting a family.
Patients with what kinds of dementia-related difficulties are currently in your care?
As I mentioned earlier not all patients can be categorized in the same bracket. There are those who have a good memory. While some can’t remember a thing. Some put food in their mouth and forget how to chew. There are those who are unaware of when they poop or pass urine. Some cannot recognize night and day. There are elderly parents who realize that this is not their home and insist on going home.
Some go out without knowing where they are going, simply walk around, get into a bus or auto, without any idea how to get back. There is a mother here who always forgot to turn off her gas stove at home. While leaving the house, she would lock it and bury the key in the ground and would forget where she buried it. She would file a complaint at the police station. This has happened at least two or three times.
There are people who do not recognize their own children. But they might recall incidents from the past. They can remember their school and school friends. Some people despite having adult children can only remember that they are still very small.
Another mom always wants to pop pills. She has shortness of breath. So she will keep coming and ask for pills. If you tell her that you will give it at two o'clock, she will agree, but she will come back in two minutes and ask for more. If I tell her that I will give them later, she will leave. Otherwise, there is no issue. There are patients with various characteristics such as lack of memory, continuing to repeat themselves, or some who repeat only certain words. Only the most problematic people are kept alone in the room. Now only one person has been given a separate room. If any of us go into that room, he will become very fearful and violent.
What is the kind of care these patients really expect?
Every employee here is very attentive in that regard. They care for them like they would take care for their own parents. They are able to empathize with their situation and act accordingly. For example, there are some who will take possession of things that are not theirs. If you try to take it back they will make a huge fuss. During that time, we don’t really persist much. And this stubbornness will only last for five minutes. After that, we can put the item back in place when their attention is on something else. Or else, if we give them more stress, their vagaries will last longer. Some people don't like to cut their nails. They will look at us as if we are going to hurt them. They will start throwing things in protest. There is another mother who insists on singing different lyrics for a song, in case she can’t remember its original lyrics. The only time you can see her active is when a song is played. And there is another woman who insists on calling her daughter. And it is not that only she has to make that call, any of us can call her as she somehow thinks her daughter is nearby. Then we will just pick up the phone and pretend to talk, and that’s enough to make her happy. But then after some time, she will reappear, with the same demand.
So if we handle things this way, without giving them much stress and take care of their small needs, they are happy. So are we.
Their reactions are known to be unpredictable and erratic. Do such experiences occur?
Such bad experiences happen many times in a day. But all of us are aware that they are not doing it consciously. That's why everyone approaches patients with compassion, no matter how violent they are. The other day, after giving bath to a patient, a staff member made him sit and fed him, he however spat the food on the staff’s face. You have to remember that this mood swing came soon after he obediently allowed the staff to clean and bathe him. At this point, we can't get angry or question their action. They may have already forgotten what caused it. People getting beaten up, yelling at each other and fighting are regular sightings here.
How is a day in their life?
They are woken up at 6.30 am. Some will wake up instantly. Some will stay in bed, unable to sleep. After that, they will brush their teeth and take them to the toilet. Some people are unable to go on their own, so the staff will take them to the toilet. Some may have passed motion on the bed. They would be cleaned thoroughly in the morning and made to finish their morning rituals. There are those who brush their teeth etc. by themselves as well as those who don’t. If we give them a helping hand, they will do it themselves. But we have to brush the teeth of the rest of the patients. Some are using diapers. Their diapers will be changed in the morning. That is followed by a short prayer and breakfast. Some will eat on their own and others will be assisted by the staff. It’s only after those with dementia have their breakfast that elderly people have theirs. Then they are made to do yoga. There is a trainer and an Ayurvedic doctor available for that purpose. Morning Ayurvedic treatment will also be provided to those who need it. Medicines are also given in the morning. Oats will be given as a health drink at 10 am. After that, they will be played their favorite songs. They will be given activities that they are able to do.
Lunch break is from twelve to half past one. Dementia patients will be fed first. After that, they will feed the older people. Those who have difficulty in eating will be fed with their hands. They are given boneless meat and fish (thorns will be removed). Food will be delivered to those who are resting in their rooms. Post lunch, they can watch TV. Whatever they want to watch, be it news, serials or films will be provided to them. By 2:15 pm, the employees would have finished their lunch, cleaned the kitchen, and spend the rest of the time with the patients. They will make them play games, and offer them pictures for colouring. They will be given activities like ball passing as well as Anthakshari.
Tea and snacks (rusk or steamed delicacies) are served at 4 pm. The food is served according to their individual diet. There is an Ayurvedic doctor for that. There will be diabetics and people with blood pressure issues. The food is arranged to suit everyone’s diet in general. So they don’t give outside food. After that everyone sits together and discusses the news, plays shuttle at five o'clock, goes for walks, and does other forms of exercises.
There is a small vegetable garden here. The vegetable garden will be watered by those who like to do it. No one is kept in a room alone. Most of them are made to sit within our earshot. Therefore, they are less likely to sleep in the morning. There was a situation where they slept longer in the morning and were unable to sleep at night. By 6 pm everyone goes to their rooms and takes a shower and by 7 pm, dinner will be served. Dinner consists of oats and wheat porridge. There have to say a prayer before dinner. After dinner, they will retire to their rooms at 8 pm. By nine o'clock everyone will go to bed. Earlier the use of phones was more. But since it was a disturbance for those who are trying to sleep, we restricted phone calls at night.
How often do patients participate in games like badminton?
Only the ones who are able to play badminton do so in the evenings. Such physical games are played more by the elderly as it is difficult for those with dementia to do this. Apart from that, they are also encouraged to play chess, carroms, and snake & ladder. They will be shown their old photographs as a memory exercise. During their younger days, they may have sung a lot and may have been talented in other ways too. So by showing them old photographs, we are encouraging them to travel back to their past and also helping them remember those days. We also provide them with their favorite bed, pillow, bed sheet, and favorite smell. Women are given doll therapy in which they are offered dolls that move their eyes and make sounds. Some people see dolls as their own children. People with dementia may have minor conflicts with each other, but these will change over time.
Have you arranged a visit from relatives?
They are brought to such institutions in situations where their children or relatives are unable to look after them. There are those who take them back when they become stable. There is no law that says they have to stay here. You can take them back whenever you want. Children and relatives are given the facility to see them. You can see them whenever you pay them a visit. Children are allowed to take them out occasionally or keep them with them for a month. There are no major restrictions. We mainly look after the happiness of the people living here. Whatever can be done for that will be done.
The activities of this center are going well with the support of the government, panchayat, nearby residents, and political leaders. When we ask for help, appropriate action is always taken.