• The Lanka Alzheimer’s Foundation’s President Prof. Shehan Williams on SL’s preparedness to face a rapid increase of people with Alzheimer’s

September was the world Alzheimer’s month, but despite these reminders, there is little awareness about the disease, the challenges it brings, and coping for both the patient and the community. Globally, 75% of people with dementia are not diagnosed, which is about 41 million people. For 47% of people living with dementia, a lack of trained clinicians serves as a barrier to diagnosis, while for 46% of them, the fear of diagnosis itself acts as a barrier to proper care. The World Health Organisation reports that dementia is the seventh leading cause of death among all diseases worldwide.

In Sri Lanka, it is estimated that approximately 400,000 will be afflicted with Alzheimer’s in the next few years, with little resources to manage the disease. 

In this interview, Kaleidoscope speaks to the Lanka Alzheimer’s Foundation’s (LAF) President, Prof. Shehan Williams about this disease.

The following are excerpts from the interview:

What exactly is Alzheimer’s and what are the causes? 

Alzheimer’s is the predominant cause of dementia. Dementia is when a person ages and develops memory problems coupled with difficulties in being able to think for themselves and to use their brain like before. 

How is Sri Lanka coping with Alzheimer’s?

As a nation, we haven’t really considered the extent of the problem. We are the fastest ageing South Asian country, and by 2030, every fifth person in this country will be over the age of 60. Many of us will have to face this condition in the future: either in ourselves or within our families. We have to be prepared to help and support the people who get affected by this condition, because there is no cure right now.

What does the LAF do?

We are the only organisation in Sri Lanka committed to dementia and Alzheimer’s exclusively. We want to raise awareness and bring it to the forefront, as it will become a major problem in the years to come. We need Government support, as well as for the community and society to be ready for this, because there will be a large number of people with Alzheimer’s to take care of and treat.

What are some common myths surrounding Alzheimer’s?

The most common myth is that people become forgetful as they age and that it’s a normal process of ageing. In reality, it’s not. Many of us can live into our hundreds if we don’t get afflicted by this condition or any other related condition like Parkinson’s, or suffer a stroke.

Medically, what strides have been made?

Numerous global clinical trials are being conducted but a cure is yet to be found. There are some drugs which afford hope, but the world is still far away in finding a cure for Alzheimer’s, which affects the brain.

What should family members of a patient be aware of in navigating the disease?

Firstly, it’s important to think of prevention. We must keep ourselves mentally and physically active to keep the condition at bay as long as possible. Unfortunately, due to genetic reasons and environmental factors, some of us will be affected. As a society, we need to identify the condition early and take steps to plan and support the affected person and their family in the right way as soon as possible. This is so that the person with Alzheimer’s may live well for as long as they can with the condition. 

What are the problems that people with Alzheimer’s face?

The brain, and our cognitive functions – to think, to act, and to remember things – are fundamental to being a human being. When these things get affected, it’s a real challenge for the individual concerned. Sometimes, the individuals themselves do not realise the extent of the problem and the effect it has on those around them. They may not realise it or be in denial, which often then leads to lots of interpersonal conflict and exploitation, and sometimes, serious risk to the life of the affected person, including wandering off, getting lost, eating inappropriate food, and not remembering allergies. 

What are the early signs of Alzheimer’s?

The signs can be very subtle in the early stages. Someone replacing things and then accusing others of taking their things, giving money to people without realising that they are doing it repeatedly, judgement being compromised, and becoming aggressive and irritable are all early signs. Dementia could come at any age as we move along in life, although it is usually after 60. When these signs begin developing, it’s good to make an early diagnosis with a doctor so that the best arrangements can be made for the person with Alzheimer’s.

What resources are available for Sri Lankans who are diagnosed with Alzheimer’s?

When it comes to the ageing population, Sri Lanka has very limited resources. We don’t have sufficient schemes or proper pensions for the aged. In the current context, it’s going to take many years to have the financial resources in place to facilitate the required services. Hence, in the meanwhile, we must mobilise the community to support each other, to be dementia friendly, to care for each other, and look out for others in the community. Younger elders could perhaps support older elders, and elders without dementia could help elders with dementia. We need a big social community approach, in addition to just the medical approach to the condition. 

Can Alzheimer’s be prevented?

Certainly. We must ensure that we keep ourselves mentally and physically active, in addition to controlling other non-communicable diseases like blood pressure, diabetes, and high cholesterol, which affect the supply of blood to the brain. We must live in a healthy environment with good air, nutrition, and an overall level of wellbeing. 

Is there stigma surrounding a person diagnosed with Alzheimer’s in Sri Lanka?

 Of course. Like with all medical conditions, especially when a person’s cognitive abilities are impaired, many don’t want to accept the condition. They find it difficult to talk about as a family, and even harder to take the person to a doctor for a diagnosis. This is because society labels stigma on a person whose mental wellbeing is impacted in some way.

(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)