Remembering not to Forget
by Marika Azzopardi
It has been voiced time and again over recent years – Dementia should be a top health priority in Europe. As much has been stressed by a number of MEPs at the European Parliament, a substantial 70 so far, endorsing the recommendations of Alzheimer Europe following the launch of the Paris Declaration way back in 2006 in a bid to raise awareness about this disease. Dementia should also be placed at the top of the health agenda in Malta. The Malta Dementia Society strongly backs this whilst lobbying with local policy makers, and making valid suggestions on what it entails and what needs to be done. To find out more about the reasons behind this urgency around the issue of dementia, I meet up with Dr Charles Scerri who is the Secretary of the Malta Dementia Society and a newly elected board member of Alzheimer Europe.
Dr Scerri’s name has been constantly linked with the study of dementia over the past years. Although he began his medical career as a pharmacist, he soon honed in on increasing his understanding of what happens within the brain in this particular disorder and what chemical agents could be valuable in slowing down the significant brain cell loss observed. This led him to read for an MPhil in Behavioural Pharmacology followed by a Doctorate studying the various biochemical, pathological and pharmacological aspects of Alzheimer’s Disease at the University of Dundee in Scotland in 2004. That same year saw the official launch of the Malta Dementia Society of which he is a founding member and a vociferous one at that.
“Dementia is not something new although it is being recognised as the epidemic of our times. We live in a modern world having better sanitary and medical care which is enabling us to live longer. It is a side-effect of longevity if you want, and with an increasingly ageing population, things can only get worse. So much so that in Alzheimer’s disease (which accounts for 60% of all dementia cases) the worst struck are women as these tend to live longer than their male counterparts.”
With this predicament for a backdrop, Dr Scerri provides deeper insight into this neurological disease which is a very subjective illness. “Each person who develops dementia develops it in his or her own manner and very often it is the relatives who recognise the subtle abnormalities which can sound the first alarm bells. True, memory loss could be precipitated by other factors such as malnutrition, certain drug therapies or brain tumours, but more often than not, when people reach a certain age, unusual and recurrent forgetfulness can very possibly be due to some form of dementia.”
The crux of the matter seems to be early diagnosis. Dr Scerri bemoans the fact that, together with other health care professionals, the current armies of doctors trained in Malta don’t have enough knowledge on dementia with respect to diagnosis, pharmacological management and long-term care. This is obviously not aided by the fact that academic preparation in this specific area at tertiary level is currently very limited. This results in very slow diagnosis, and my interviewee stresses insistently that the biggest problem is that ‘we don’t reach them early enough!’
With a possible 4,500 people in Malta being diagnosed with dementia, numbers peaking sharply in the octogenarian age group, the Maltese population must wake up to the fact that in the here and now, 1% of the general population is forgetting fast. By 2035, this percentage will have almost doubled. Who will care for these people?
“That is just one of my fears. With a serious lack of long-term planning plaguing our health care facilities which are already seriously handicapped financially, the government will find itself facing a scenario wherein family carers are less and less, and itself being called upon to offer services. Care for people with dementia is a 24/7 affair. The government authorities had better wake up to some mind-boggling facts: individuals with dementia live long lives and the average time-span from diagnosis to decease is approximately 11 years. This long co-habitation with dementia has harsh effects on the immediate family structure. Most often, family members have to stop working to care for their relative and this leads to further social, psychological and financial problems. Epidemiological studies suggest that 60% of the relatives who act as carers resort to psychiatric assistance at some point or other due to extreme stress levels. When institutionalisation of the individual with dementia occurs, the strain on the public structures becomes enormous.” Then again, Dr Scerri pinpoints a huge financial crevice around dementia as, according to the WHO, the disease is costing the national health services of developed countries way beyond cancer and cardio vascular disease put together. With the current costs of medication reaching close to some Euro 150 per month locally, no part of which expense is subsidised by government, the individual families of dementia sufferers are having an even harder time. But giving the medication for free, although helpful, is not the only answer.
Apart from the evident lack of training to support healthcare professionals and the lack of awareness of policy makers, individuals with dementia must also face the lack of awareness of the man in the street who pooh-poohs the problem away, or even worse, stamps it with a derogative stigma that can only make matters worse. It leads to the sufferer being emarginated and negatively affects the dignity of the individual.
“We need to educate, educate, educate at all levels. I have visited several countries in my quest to learn more about dementia and so far I can see we lack far behind in terms of adopting a patient-centred care strategy placing training as the essential link in the chain.” Being a lecturer in Neuropathology and Neuropharmacology at the University of Malta certainly helps Dr Scerri push the message home. He can speak to his students of current and future research strategies aimed at investigating factors that play an important role in brain cell loss in dementia and other neurological disorders. He strongly believes that keeping away from stress, adopting a healthy lifestyle coupled with plenty of exercise and keeping one’s mind active can help in keeping dementia at bay. With a love for drama, theatre and writing, he keeps his mind active by resorting to script-writing, having been awarded the 2001 Broadcasting Authority Award for Best Radio Drama with ‘Zaren’. But even as he speaks of this love for writing and poetry, Dr Scerri’s words revert back to the topic in question and his constant urge to get things moving in the right direction. “We are all potential dementia sufferers…. we’d better stand up and take note.”