Deciphering dementia

By Cassandra Mascarenhas

Amidst the many crises that the world is currently facing, there are certain issues that tend to slip through the cracks and are ignored or downplayed by the masses in the face of seemingly bigger problems.

Although one may not think of it as a debilitating issue that could have an adverse impact on society as a whole, dementia is fast becoming a growing and global problem, with 35.6 million people suffering from the disease worldwide. These figures are expected to rise to 65.7 million by 2030 and 115.4 million by 2050.

Drawing attention to this quickly escalating disease, the United Nations held a second meeting in its history on a global health issue in September 2011 by convening a summit on Non Communicable Diseases during which the final political declaration of the summit specifically recognised neurological diseases, including Alzheimer’s and other dementias as an important cause of morbidity that contribute to the global NCD burden.

Sri Lanka too is not immune from this problem even though it is unfortunately not acknowledged by the public as being one due to the social stigma attached to those affected by Alzheimer’s and other forms of dementia.

According to the Lanka Alzheimer’s Foundation, there are at the moment 100,000 to 150,000 people suffering from dementia; however LAF Founder and President Tami Tamitegama revealed that this figure could soon increase to 500,000 within the next decade or two in the face of Sri Lanka’s ageing population.

Since it was inaugurated in 2002, LAF has been making steady progress in raising awareness about the disease and as part of their awareness campaign, the Foundation announced the visit of Honorary Vice-President of Alzheimer’s Disease International and Alzheimer’s Society Dr. Nori Graham in Sri Lanka.

Dr. Graham is a former Chairperson of Alzheimer’s Disease International and Alzheimer’s Society, UK and during her six year tenure as the Chairman of ADI the membership grew from 40 to 64 countries; where most new members came from developing nations, including Sri Lanka.

Her primary interest is the inclusion of all countries in one global family working towards a commitment to address a common goal on the growing concern over dementia. Alzheimer’s is currently the most common form of dementia, with vascular dementia coming in second.

Addressing a media gathering earlier this week, Dr. Graham expressed her joy at the progress made in Sri Lanka since her last visit in 2003.

“For me it is a wonderful moment to be here this afternoon as it is the first time I am seeing the completed Alzheimer’s service centre. I last came in 2003 this was a rough patch of land with dilapidated building on it and one could not even imagine that this could possibly be created into a real service centre that will be able to offer all sorts of assistance for people with dementia and their families,” she said.

“It’s so important for the both the families and the person with dementia that the places associated with dementia are somewhere that you would be proud to bring your family to, that it’s a place you really think is and welcoming and warm. So I think that the establishment of the Lanka Alzheimer’s Foundation really increases the status of the subject of dementia in this country; really changed it overnight in fact as I know what the problems are here.”

She stated that she had just returned from India where she had spent the last few weeks going around various cities and visiting centres and chapters of the India’s Alzheimer’s Association and conducting talks and she described how she found out how difficult it is in countries in this part of the world to start raising awareness about the disease and the impact it has on families and society in general.

“For me, the fact that the centre is up and is starting to deliver services to families is a great triumph along with the people supporting this project and volunteers because it’s still going to be a difficult job to raise awareness in this country. It’s hard to do it and one should have not have too high expectations,” Graham cautioned.

“I do know that with countries in the Asia Pacific region, having a national centre can really make a difference as in the end the professionals and policy makers do start to open their eyes and realise that this is a big problem and that it is going to be a much bigger problem over the next couple of decades and beyond as populations are ageing very fast and I think that having this centre is going to have an impact even if it doesn’t have one immediately.”

Graham emphasised on the importance of encouraging doctors to make earlier diagnoses of dementia patients so that they will be able to receive help earlier and went on to explain that it is a two-fold process. The first step involves the family of the patient itself, their understanding of the disease and having access to information, education and training in order to able to handle the situation better.

“People with dementia need to be able to lead good lifestyles. Right now, it’s a hidden disorder and people don’t understand how to deal with it. There is an immense amount of stigma attached to the disease – people go to the extent of hiding it from society, which is the sad reality ad they do not want anyone to know about it. Therefore there needs to be further education within the community to raise awareness.”

She admitted that there is currently no known cause for dementia although there are drugs on the market that slow down the decline of mental functions to a certain extent especially if given at the earlier stages of the disease but again, this does not work for all patients.

“The only way of combating this disease is by leading healthy lifestyles with regular exercise, avoiding excessive amounts of salt and sugar, having good diets, no smoking and alcohol in moderation. While this does not prevent one from getting the disease, it will work as a preventive measure,” she added.

“Populations in this part of the world are ageing and the figures of people affected by dementia are going to be doubling; this problem is not going to go away and there needs to be services in place to deal with it. However there has been massive progress globally and the world is waking up to the reality of the disease – there is slow but consistent progress being made.

Sri Lanka too should look towards formulating a national Alzheimer’s report for the country as done by India this year,” she suggested.