Alzheimer’s: The value of knowing

Alzheimer’s disease is the most common form of dementia and is characterised by a severe and progressive cognitive decline manifesting itself in memory loss, confusion, language difficulties, mood variations, personality changes and an inability to perform daily activities. It is estimated that over seven million people in EU member states have the condition. In Malta, one per cent of the population has dementia, a figure that is expected to double over the next 25 years.

Alzheimer’s disease is a major public health problem and it is essential that more is done to address the lack of effective treatments and the shortcomings in care before this mental condition overwhelms national health care structures. In Europe, there is an ongoing discussion about finding ways to promote existing knowledge and understanding of how the public looks at the societal implications of this condition to develop better public health initiatives and information campaigns.

With the impact of the increasing incidence of Alzheimer’s disease on individuals and society becoming clearer, the early diagnosis and effective treatment of affected individuals is a major public health priority. The benefits of early diagnosis include access to treatment at the earliest possible opportunity and the ability to make changes and plan for the future. This may include reducing working hours or stopping work altogether, claryfing what support services may be available, gaining information about the disease and its impact and decreasing anxiety and uncertainty of not knowing why certain behavioural changes are occurring.

Early diagnosis will also allow individuals with dementia to be involved in their own decisions before their cognitive function is too impaired and to identify preferences about future care plans or appointing someone to make decisions on their behalf when they become incapacitated.

Although research has demonstrated that individuals with dementia want to be informed of their diagnosis and that non-discloure or vagueness can be upsetting, early diagnosis continues to be the exception rather than the norm. Across Europe, only between one third and one half of individuals with Al­zheimer’s disease have been diagnosed. Carers of these individuals also report long delays between first noticing the symptoms and actual diagnosis.

As a society, we need to ensure that the debate on the best care of individuals with Alzheimer’s disease and other dementias remains high on the public health agenda. This requires an understanding not only of what individuals with dementia and their carers believe is important but also what those members of the public who may be affected in the future would wish to see in place.

Recently, a survey in four countries in Europe (Germany, France, Poland and Spain) and the US was carried out by the University of Harvard School of Public Health in association with Alzheimer Europe. Most respondents stated that they would see a doctor if they or a family member were exhibiting symptoms such as confusion and memory loss to determine whether these symptoms were due to Alzheimer’s disease.

Participants also showed significant interest in obtaining a test prior to symptoms becoming apparent, if one were available.

Alzheimer’s disease ranked as a major concern in the countries surveyed, second only to cancer.

Those above the age of 60 years have the highest fear of developing Alzheimer’s disease.

The significant majority of the public support greater government spending on research and quality care in Alzheimer’s disease.

There was general agreement between countries on the majority of symptoms that characterise the disease. Confusion and disorientation, wandering and getting lost and difficulty in remembering things from the day before were all identified by more than 90 per cent of respondents. However, there was a lower level of awareness that Alzheimer’s disease significantly reduces life expectancy.

The results of this study, which attracted worldwide press coverage, indicated that there is a need to educate members of the public about some of the realities of Alzheimer’s disease. They also showed that a national dementia strategy addressing the many medical, social and financial aspects of this condition should be in place across the various countries in Europe and beyond.

It is through the implementation of such a plan that individuals with Alzheimer’s disease and other dementias will be guaranteened the necessary high-quality support and care that they truly deserve.

Dr Scerri is a lecturer at the Department of Pathology, Faculty of Medicine and Surgery, University of Malta.