Dementia is a serious, common and rapidly growing worldwide neurodegenerative condition associated with increased healthcare utilisation. It is the major predictor of morbidity and mortality in the elderly and costs the national health services in developed and developing countries more than cardiovascular disease and cancer put together, according to WHO's 2003 World Health Report.
Dementia is a general term describing neurological conditions that result from progressive dysfunction of brain areas associated with cognitive function. Common symptoms include changes in mood, disturbance in personality and behaviour, memory problems and difficulty in performing activities of daily living (ADL) such as bathing, cooking and dressing.
It is mostly associated with old age: it affects around 1.5 per cent of individuals aged 65, reaching an incidence rate of 30 per cent at 80. Patients with dementia have a substantially shortened life expectancy, with an average survival time-span ranging from eight to ten years following diagnosis.
The most common form of dementia is known as Alzheimer's Disease (AD), accounting for around 50-60 per cent of all cases. Other important but less common forms of dementia include vascular dementia, Lewy-body dementia and fronto-temporal dementia.
Unfortunately, accurate diagnosis is difficult, as different forms of dementia are believed to have a common underlying neuropathology. Although fundamental research, especially in the last decade, has identified some of the changes that occur in the brain during the disease process, much remains to be done especially in the areas of disease management and the development of appropriate models of long-term care.
Given the growth in the elderly population, the prevalence of dementia is expected to double in the next 40 to 50 years. Recent data suggest that, worldwide, a new case of dementia is diagnosed every seven seconds.
It is estimated that around six million people residing in the EU member states currently have dementia and one in every 20 people aged over 65 has AD. However, it is believed that the real number of people affected by dementia may be much larger than these statistics suggest.
The social burden that accompanies the disease is also very high as most of the carers are the relatives themselves who, in most cases, have to give up paid employment and other activities to care for their loved one.
The impact of the disease on care-givers is therefore enormous and, as the patient's mental abilities deteriorate, the burden on care-givers increases. All this is generally overlooked by health authorities and policymakers, who do not realise the vast amounts they save through dementia care given free of charge.
A recent survey about dementia care-giving in the EU clearly revealed the appalling lack of information available to dementia patients and carers at the time of diagnosis. Most reported receiving inadequate information on the disease and what was expected in terms of care as the disease progresses.
Furthermore, the survey also highlighted the fact that many carers lack basic support services to help them cope with their caring role. More than half do not have access to services such as home care, day care or any other form of care and when these services are available, many carers have to pay out of their own pocket.
This increases the financial burden that such patients have to endure, especially in EU countries like Malta, where anti-dementia drugs are not included in the list of free medicinals supplied by the health authorities. In some EU countries, AD care takes approximately 10-25 per cent of a family's average net annual income. It is therefore not surprising that community studies show that care-givers of individuals with dementia are under significant financial, social and psychological stress, with most of them ending up needing psychiatric care.
Dementia in Malta
Although Malta, like the rest of EU countries, has an ever-growing aging population, studies aimed at determining the prevalence rate of dementia are lacking. In a scientific paper to be published in the near future, it has been calculated that over 4,000 people at present suffer from dementia, accounting for about one per cent of the overall population.
This figure is expected to almost double in the next 30-40 years, reaching approximately two per cent of the population of the Maltese islands. It is therefore important that dementia becomes a top healthcare priority both for the government as well as Maltese society in general.
Alzheimer Europe (www. alzheimer-europe.org), whose Malta representative is the Malta Dementia Society (www.maltadementiasociety.org.mt), is an umbrella organisation aiming to improve the care and treatment of AD patients through intensified collaboration between its member organisations.
This EU-funded organisation was instrumental in applying and carrying out transnational European projects that brought together a number of national Alzheimer and dementia associations around common initiatives.
Present and future priorities are various but the focus remains that of "enhancing the dignity, respect and self-determination of the person with dementia and his/her family throughout the course of the disease".
Alzheimer Europe is also working on promoting the autonomy of people with dementia through the right to an early diagnosis and the recognition of advanced directives.
For a number of years, diagnosis of dementia was made during the late stages of the disease process with the diagnosed individual not being able to fully understand the implications and the progress of the disease.
Today, thanks to more precise diagnostic procedures, more individuals are diagnosed with the disease in the earlier stages, when their cognitive abilities are still intact.
It is therefore a fundamental right for individuals with dementia to be able to participate in decisions affecting their lives and therefore be informed on the various aspects of the disease at the time of diagnosis.
Yet even in cases where people with dementia have been informed of their diagnosis, current medical and legal practice do not guarantee that their wishes, expressed when they are fully able to do so will be respected.
While written advance directives or living wills may be consulted and recognised, no European country has developed a clear legal framework for the respect of wishes expressed in such an advance directive.
Paris Declaration
Last month, coinciding with the centenary of Dr Alois Alzheimer's discovery of the disease, Alzheimer Europe launched the Paris Declaration on the political priorities of the Alzheimer movement at a meeting in the European Parliament hosted by Astrid Lulling, MEP (Luxembourg).
In this Declaration, Alzheimer Europe outlined the political priorities of the European Alzheimer Movement and issued a call for action to improve the situation of European citizens living with Alzheimer's Disease or any form of dementia, as well as that of their informal or family carers. In particular, the declaration calls on European and national policy makers to:
• make Alzheimer's Disease a public health priority by developing national and European action programmes on Alzheimer's Disease and by increasing the funding of research into the causes, prevention and treatment of Alzheimer's and other dementias;
• promote the early diagnosis of the disease by developing awareness campaigns and making dementia a compulsory part of medical training;
• improve the quality of life of people with dementia and their carers through the development of support and respite services and increased financial support for these services; and
• promote the autonomy and dignity of people with dementia through systematic information of people diagnosed, the recognition of advance directives and improvements to existing guardianship systems.
The Alzheimer Europe Yearbook Dementia in Europe, also launched at the meeting, provides comparative data on the number of people with dementia, the anti-dementia drugs reimbursement systems and provision of home care in 31 European countries.
The local authorities should use such data, compare the local situation with other countries and learn from existing best practices elsewhere to improve the quality of life of people with dementia and their carers.
Alzheimer Europe also urges local MEPs and interested parties to pledge their support to the campaign and make dementia a public health priority.
Further information can be obtained from www.dementia-in-europe.eu. It is through our common effort that we may succeed to offer the best support and care to individuals with dementia and their care-givers.
Dr Scerri is a lecturer in the Faculty of Medicine and Surgery, University of Malta, and general secretary of the Malta Dementia Society.