I recently locked myself out – I had left the front door keys on the kitchen table as I was going out and only realised my mishap on my return home.
We all suffer such instances of forgetfulness. But what if these became regular occurrences? And what if instead of forgetting your keys, what slips from your memory is actually the concept of what keys are for?
Dementia is a major global health problem, with the World Health Organisation estimating the number of people living with dementia to be in the region of 47.5 million. This is projected to increase to 75.6 million by 2030 and, with no cure available, the focus is increasingly on risk reduction, timely diagnosis and early intervention.
In 2015, around 6,000 individuals in Malta had dementia, translating into approximately 1.5 per cent of the population. The number is expected to more than double by 2050.
“This is without taking into account those who act as informal caregivers. They experience most of the burden, physical, psychological, financial or otherwise,” Prof. Charles Scerri, national focal point on dementia and resident senior academic at the Department of Pathology, University of Malta, told the Times of Malta.
For every individual with dementia there are at least two or three other individuals directly affected by it.
Dementia describes a clinical syndrome that encompasses difficulties in memory, language and behaviour, leading to impairment in activities of daily living.
The language we use to talk about dementia influences how people living with condition are viewed and also how they feel about themselves. People with dementia prefer words and descriptions that are accurate, balanced and respectful.
Scientists have a battle on their hands finding new ways to fight the disease processes behind dementia. Another battle to win is updating the collective public understanding of dementia.
Timely diagnosis is essential in enhancing the quality of life of the individual with dementia, their caregivers and relatives
Alzheimer’s disease is the most common form of dementia accounting for approximately 70 per cent of all dementia cases. This is followed by vascular dementia, dementia with Lewy bodies (DLB) and frontotemporal (FTD) dementia.
Age is the most important risk factor followed by family history, unhealthy lifestyle, smoking and alcohol abuse and repeated head injury.
Asked how many Maltese people know exactly what dementia is, Prof. Scerri said this is a very difficult question to answer.
“Different people may have a different understanding of what dementia is. Furthermore, there are various misconceptions. For example, there are individuals who still believe dementia is a direct consequence of old age. It’s not. Age is the most important risk factor but getting older does not mean that one will get dementia.”
Malta is facing a demographic shift where the number of senior citizens is increasing while the birth rate stays low.
According to Prof. Scerri, current projections indicate that the Maltese population will decline but a significant chunk of that will be made up of individuals over the age of 65.
“This will have a significant impact on old-age dependency ratio as fewer individuals will occupy the working age bracket.
“One can argue that the increase in life expectancy is, in itself, positive. However, it comes at a price. Neurodegenerative conditions in which advanced age is a major risk factor, such as dementia, will increase.
According to the World Health Organisation Global Burden of Disease (GBD) report, dementia contributes to approximately 11 per cent of all years lived with disability in people aged 60 years and over, the main reason being that dementia has a disproportionate impact on independent living.
Dementia is also the costliest medical condition with an annual cost of one per cent of the global gross domestic product.
“Another misconception is that all problems with memory are due to dementia,” Prof. Scerri said. “People tend to believe whatever is published in the media, even though not all information out there is correct. The best way to inform people is to engage directly with them and use terminology that they can easily understand.”
Experts in the UK have warned older people are having to endure unnecessary investigation and potentially harmful treatment for something that is probably just part of ageing.
Prof. Scerri doesn’t concur with this school of thought.
“Dementia is not simply a part of the ageing process. Unfortunately, a lot of people still believe it is and thus don’t seek professional assistance early enough. Timely diagnosis is essential in enhancing the quality of life of the individual with dementia, their caregivers and relatives,” he said.
Another story by the British Press Association said research suggests a third of people born in 2015 may develop dementia.
“Life expectancy is increasing worldwide – people born in 2015 will be expected to live longer and easily live to be over 80. Well, a third of people at this age will have dementia if no significant advancements in terms of treatment are achieved,” Prof. Scerri said.
Awareness and education at all levels are key to help people gain a greater appreciation of the impact. People need information and guidance in order to be aware of the risk factors, symptoms and seek advice from people who can help them.
An increase in dementia will bring about a greater demand on health and social care services as well as on families and society as a whole. Is Malta prepared for this challenge?
“No, at least not yet. The medico-social consequences of dementia on the affected individual are enormous,” explained Prof. Scerri.
As the disease advances, memory is progressively lost. Social contact ceases and the individual become isolated, often home-bound. The need for community care is therefore essential in any management plan for individuals with dementia and their caregivers.
Dementia can also strike early on in life, when individuals are in their 40s and 50s. The consequences here are harsher on the family structure as a whole.
“Currently, family members absorb many of the financial and social costs associated with providing dementia care. On a positive note, Malta has made significant progress and is among the leading European countries in addressing this problem,” added Prof. Scerri.
The National Dementia Strategy, published by the Parliamentary Secretariat for the Rights of Persons with Disability and Active Ageing in April last year, is a step in the right direction.
“It’s a good start in a long process with which we intend to enhance the quality of life of these individuals,” Prof. Scerri said.
Awareness also reduces stigma and the misconception that the symptoms of dementia are the direct consequence of old age or that nothing can be done. Enhancing the understanding of dementia is also fundamental in developing dementia-friendly communities, where people with dementia are welcomed to continue participating in daily life.
Active ageing plays an important role. Launched in 2013, the National Strategic Policy for Active Ageing refers to dementia-friendly communities where individuals with dementia can continue to contribute to society. Bettering community services through targeted support will enhance the quality of life and eventually delay institutionalisation.
According to Prof. Scerri, residential services should promote diverse, enabling and meaningful activities.
“Furthermore, leading an active life, even in advanced age, has been shown to be protective against developing the most common forms of dementia.”
Raising awareness
The Malta Dementia Society (MDS) is a not-for-profit NGO that works on various fronts.
Awareness of dementia remains at the top of its agenda. Over the years, the MDS has built a strong relationship with the government and the media. Society members are frequent contributors to the printed press and regularly appear on TV and radio programmes to discuss various aspects of dementia management and care.
In February 2013, the MDS launched its Support Group, an important step towards offering the best assistance to dementia caregivers as well as organising activities that bring them together and share their experiences. The MDS is also involved in regular consultations with policymakers in introducing services aimed at individuals with dementia, caregivers and family members.
www.maltadementiasociety.org.mt
Medication and dementia
There is no cure for the most common forms of dementia. The available medication is only intended to slow down the cognitive decline as the disease progresses.
In Malta, most medication is available as an out-of-pocket expense – only one has been included in the government formulary list and thus available for free by the State following the authorisation by consultant geriatricians, neurologists and psychiatrists.
The drug in question is mostly recommended for mild-to-moderate dementia. Other drug alternatives for symptomatic treatment of dementia in its mild, moderate, and severe form would thus need to be purchased. Taking both informal and formal costs, dementia is the most expensive medico-social condition worldwide – one per cent of the global gross domestic product goes to dementia. That currently stands at a staggering $880 billion annually.
World Alzheimers’ Day is September 21.
National Dementia Strategy: the objectives
The overarching aim of the national dementia strategy is enhancing the quality of life of individuals with dementia, their caregivers and family members through a number of interventions, including increasing awareness and understanding of dementia in order to reduce stigma and the widespread misconception that the symptoms of dementia are a direct consequence of old age.
The strategy also seeks to strengthen dementia diagnosis and intervention as early diagnosis enhances the quality of life and limits institutionalisation.
Main symptoms associated with dementia
Dementia is a clinical term referring to a group of brain diseases that result in progressive deterioration of cognitive functions. Approximately 70 per cent of all dementia cases are of the Alzheimer type (Alzheimer’s disease). Symptoms include memory impairment, difficulties in spatial orientation, changes in mood and personality, communication deficiencies and functional losses in activities of daily living.
As the disease progresses, brain function becomes more impaired and individuals will eventually become totally dependent on others. What causes the onset of the most common forms of dementia is unknown. Brain damage starts approximately 15-20 years before the first symptoms appear and risk factors include age, female gender, smoking and alcohol abuse, family history, repeated head trauma and cardiovascular and metabolic factors.