• Lanka Alzheimer’s Foundation Director Romany Parakrama on a common myth about the disease

Approximately 150,000 people are said to be living with dementia in Sri Lanka – and a majority are said to have Alzheimer’s Disease. The age adjusted death rate is 27.62 per 100,000 people, placing Sri Lanka in the 14th place globally. 

Time and time again, we have been told that awareness is what is lacking and is what is needed. The Lanka Alzheimer’s Foundation is doing something about this – by launching a book titled ‘Malithi’s Diary – Learning About Dementia’. 

Discussing the new book and the disease is the Lanka Alzheimer’s Foundation Director Romany Parakrama who was on ‘Kaleidoscope’ this week. 

Following are excerpts from the interview: 

What do we know about Alzheimer’s and what don’t we know about Alzheimer’s?

We do know that Alzheimer’s is a degenerative, progressive brain disease. We also know that it gets worse over time and that Alzheimer’s is the most common form of dementia. What we also know is that certain lifestyle factors – such as diet, exercise, refraining from excessive smoking and drinking, and managing cholesterol and high blood pressure – can help in prevention. What we don’t know is what triggers the disease, how to stop it, and what the cure is.

What is ‘Malithi’s Diary’ all about?

‘Malithi’s Diary’ is a children’s book to help children understand dementia. It’s about a little girl who has to keep a holiday diary and write about what happens at home and the things around her. During this process, she realises and sees the changes in her much-loved grandmother. Over the course of the story, she learns – together with her parents – how to respond with patience, kindness, and empathy.

What spurred the Lanka Alzheimer’s Foundation to publish this book?

We saw a gap in the resources available for children to understand dementia. Very often, children see these changes in a grandparent or another elderly person, and it can be very confusing if you don’t understand it – it can even be a little scary – so, we wanted to have a way of explaining it in a language that they would understand.

Another aspect is that very often, it is children who spend the most time with a grandparent or elderly person, so, they might see the signs long before a parent who is just caught up in life. The whole idea was to give parents a resource where they can start having this really important conversation with children in a gentle, age-appropriate manner.

What are the important areas that this book actually tackles?

It talks about memory loss, personality changes, and the key aspects that you will see in someone who is suffering from dementia. But, it also talks about the precious memories created with this person before the changes. We wanted to say that, ‘Yes, with forgetfulness and memory change, the connection changes – but, it doesn’t end. There is still a connection.’

You have done this in three languages – English, Sinhala, and Tamil. What was challenging in translating it?

More than translating, it was in the writing of the book. How do you take medical terms and symptoms and put them in a language that is understandable for children? How do you give them examples that they can relate to? Once we figured that out and had the story – bringing it from the child’s point of view to make it more understandable – translating it into Sinhala and Tamil became that much simpler. People said that it was still tricky finding the right language and tone, but it was easier.

There are some misconceptions and myths surrounding Alzheimer’s. How would you like to dispel them?

The key myth is that Alzheimer’s is a natural part of ageing. It is not – it is a disease.

Another myth is that only very old people get it. That’s not true. There are younger people who get it too, though less frequently. And then there’s the myth that it’s just forgetfulness. It’s not. Alzheimer’s is a complex disease. It impacts not just memory but also thinking, speech, and many other aspects.

What adjustments would a family have to make if someone has Alzheimer’s in the family?

One thing is having a routine for the person – set times, a daily routine. It seems to help with confusion, maybe by creating habits. That’s very important. Communication should be short and clear because things are constantly changing. Make your home hazard-free – it’s like childproofing, ensuring that there’s no access to sharp objects or open flames. 

People with Alzheimer’s may pace a lot, so, remove things like loose rugs that they can trip over. They may also wander off and forget how to come back home, so keeping gates and doors closed is helpful. But, that doesn’t mean locking them in or isolating them – social isolation is the worst thing. Let them do as much as they can for themselves while it is still practical. 

Encourage social outings – going to temples, churches, or pursuing hobbies. But, most of all, you have to change your mindset. Be patient, be kind, and be reasonable.

So, what are the biggest no-no’s when handling a person with Alzheimer’s?

Don’t argue. Don’t keep correcting them. Don’t keep reminding them of things that they’ve forgotten. Don’t rush or pressure them. Also, don’t treat them like they’re invisible or incapable.

You need to use patience and kindness – not try to make them who they were before, but meet them where they are and find new ways to connect. Don’t say things like ‘Oh, you’ve forgotten this?’ or ‘How can you forget that?’ Another myth is that caregivers can do it all. They can’t. They need breaks. Get support. Ask for help.

So, it is a learning process all around. How should someone deal with a person who has seemingly forgotten who they are?

It’s heart-breaking, and easier to talk about than to actually do. You have to remain gentle. You may have to reintroduce yourself – ‘I’m your daughter.’ Don’t say things like, ‘How could you forget who I am? I’m your daughter.’ 

Focus on making them feel safe and comfortable. Photographs, familiar environments, and familiar voices can help. A kind word, a gentle touch – these things can bring comfort, even if they don’t bring memory.

Anything you would like those who are struggling with the disease to know?

Yes. There is hope, there is dignity, and there is still purpose in your journey. The diagnosis does not define you, your family, or your loved ones. You are allowed to live. There are people and resources out there. You need to look for support and live life. And, for the rest of us – what can we do to help? Learn to be kinder. Learn to be more empathetic.

So what plans for this book?

We’re planning a national launch. We want it to be available to as many people as possible.

Rather than just putting the book out there, we’re doing discussions, and readings – trying to get the conversation going across the island. There’s a project to take it to all parts of the country and make it available in community libraries and school libraries, where people can access it and use it as a tool. It’s not just limited to a few people.

(The writer is the host, director, and co-producer of the weekly digital programme ‘Kaleidoscope with Savithri Rodrigo’ which can be viewed on YouTube, Facebook, Instagram and LinkedIn. She has over three decades of experience in print, electronic, and social media)