Community as cure: dealing with dementia

Everyone knows what dementia is. Or, at least, more or less everyone appears to have an intuitive understanding of this prevalent – and, sadly, ascendant – illness: that it has something to do with ‘old people and memory loss’ can be taken for granted as being what the popular wisdom would slot under ‘dementia’.

This is, of course, a very reductive picture of dementia patients, but in a lot of ways, a mistaken and broad-brush definition of the disease lies at the heart of the social problems it engenders.

In 2012, the World Health Organisation (WHO) defined dementia as ‘a syndrome due to illness of the brain, usually of a chronic or progressive nature, in which there is a disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgement’.

That such a compromising illness gives rise to negative stigma is perhaps to be expected, but it’s particularly disheartening to learnt that the illness doesn’t appear to be given the scrutiny and attention it deserves in local medical circles too.

Recent research by Dr Charles and Anthony Scerri – of the Malta Dementia Society – has revealed that a total of 10% of medical professionals working in Malta believe the illness to be a “natural follow-up” to old age.

Speaking to THINK Magazine earlier this month, Charles Scerri said that this is patently not true.

“Yes, the chances of having dementia increase with age but it doesn’t have to happen. People over 90 have a 50% chance of getting it. The other 50% don’t,” Scerri told the magazine.

Raising awareness about the illness is just one key concern in battling dementia. The other is slightly more concrete. Given that dementia patients would be vulnerable to sudden changes in environment – apart from being generally disoriented by the illness – it remains advisable for them to remain in the care of their families.

Economical factors also come into play: due to dauntingly high demand for dementia care, both Government and the Opposition agreed that dementia patients should be kept at home whenever possible.

“There are currently at least 2,000 elderly people waiting to be placed under long-term care, some of whom have been on the waiting list since 2009. The government must build the equivalent of two St Vincent de Paule residences to cater for the demand,” parliamentary secretary for active ageing and the elderly Justyne Caruana said during an edition of Reporter on TVM in September.

Her Nationalist counterpart Mario Galea plainly said that, “it is not just the responsibility of the state”.

“There is this incorrect perception that as soon as an elderly person is in need of long-term care, he or she becomes the state’s problem. The relatives must shoulder the responsibility too,” Galea said on Reporter.

The numbers show that this isn’t, in fact, a baseless concern. According to a spokesperson for Justyne Caruana, “individuals with dementia are expected to increase from the current 6,000 to around 13,000 in the coming 30 years” owing to Malta’s growing elderly population.

It’s also an expensive illness: in Europe, it comes to an average of €22,000 per individual, with the total for Malta ranging between €63 to €96 million.

Speaking to MaltaToday, a spokesperson for Justyne Caruana reiterated the importance of community care, while assuring that steps are being taken to come up with tangible solutions to the problem, as part of the National Dementia Strategy, which the secretariat aims to early next year.

Aiming to “increase the number of dementia activity centres across the Maltese islands does not only ensure that more individuals with dementia will be properly cared for in the community but will also serve as a much-needed respite service, the latter being central in limiting the costs of long-term care and institutionalisation.

Government is hoping to “increase the number of dementia activity centres across the Maltese islands” in a bid to cut down costs and dependency on institutions.

“The individual with dementia as well as the family and caregivers needs to be viewed as a single unit requiring appropriate support. One of our aims is to develop a number of multi-disciplinary dementia intervention teams, which will serve as a point of reference in the community and providing a holistic approach to management and care,” the spokesperson said.

Government is also “willing to work with the private sector” to combat dementia. One such entity is Seniors Helping Seniors Malta (SHS), which offers non-medical services intended to support older persons still living independently, their families, and the medical community.

SHS franchise owner Simon Fiorini Lowell says that while “dementia is a problem the world over” and that its challenges are the same in Malta as everywhere else, “in Malta we have an advantage in terms of proximity from family and health centres, so help is always readily available”.

However, Fiorini Lowell adds that “standards in home and care are lacking, although these issues are currently being addressed”.

Commenting on dementia patients who receive care at home, Fiorni Lowell said that “a dementia sufferer can lead a very comfortable life at home depending on the level of care provided”. 

However this comes with its own challenges, as not only do many of the relatives have to work, “it is also essential that they rest from time to time so that the avoid burn out”.

Fiorni Lowell suggests that having a good carer is key, as they can help ease the burden on family members while assuring a good quality of life for the patient.

“The carers can also impart a lot of their knowledge and experience about the illness to the family which will raise the person’s overall care.”

What is dementia?

Dementia is not a standalone disease, but a general term to describe symptoms of impaired memory, communication and thinking.
Though dementia commonly manifests itself in old age, it is not intrinsically linked to aging. Prior to contemporary medical understanding of certain disorders, dementia was conflated with the even more general term ‘senility’, which was understood as simply being an inevitable by-product of old age.

In fact, milder cognitive setbacks like poorer short-term memory can begin occurring as early as 20 years of age – which is known as age-related cognitive decline, not dementia, as it does not lead to other social problems. To qualify as dementia, the symptoms would need to be severe enough to impact on an individual’s daily activities.

While ‘mild cognitive impairment’ doesn’t qualify as dementia either – because it is not severe enough – its symptoms may lead to dementia later on.

Since brain cell death cannot be reversed, there is no real way of putting a stop to degenerative cause of dementia. This is why providing care and treating symptoms remains a key priority for those dealing with dementia patients.

However if the dementia symptoms manifest themselves as the result of a non-degenerative cause, treatment to prevent further brain tissue damage can be applied. Examples include injury, medication effects, vitamin deficiency.