Background
On 22 July 2009 the European Commission adopted its Communication on a European initiative on Alzheimer`s disease and other dementias COM(2009) 380 final.
The Communication addresses 4 issues on which the EU could act:
– Public health – prevention, early diagnosis and treatment of dementia.
– Research to understand the disease, enhance coordination in research and need for epidemiological data.
– Social affairs – share of good practices regarding diagnosis, treatment and financing of therapies.
– Legal – patients` rights, autonomy and stigma.
EPHA`s contribution to a European Parliament own initiative report on the Communication
EPHA was requested by a number of MEPs to provide input to the report. In July 2010, EPHA ran a short consultation and gathered recommendations and relevant documents from several members, which were subsequently sent to the MEPs who contacted EPHA.
Comments and suggestions provided by EPHA members: Mental Health Europe and AGE Platform Europe – summary
Issues of common concern
– The ageing of European society will have important mental health implications as poor mental health and mental disorders can affect older people in terms of the emergence of physical or neurodegenerative illness. This will have implications on public health and social systems, labour markets and public finances across the EU.
– High prevalence of Alzheimer`s disease and other dementias – around 7.3 million people across all 27 European Union Member States, a figure that is expected to double by 2020 with a negative potential to disrupt social and economic cohesion in the EU.
– The Use of the concept of Dementia – using Alzheimer as a generic wording for Dementia creates a risk that other forms of dementia be forgotten or neglected.
– Prevention – the way to deal with dementia should not only be focused on treatment and medication, as prevention of dementia and early diagnosis are of huge importance and the most cost-effective.
– Misdiagnosing early dementia in older individuals can have devastating effects on the affected and their families.
– AGE Platform Europe particularly points out the problems of adequate use and overmedication with regards to dementia, and also links medication to the question of lack of clinical trials which are underdeveloped, if not inexistent regarding elderly people.
– Gender dimension – there are twice as many women (4.9 million) than men (2.4 million) suffering from dementia in Europe.
– Deinstitutionalisation – this problem is closely linked with human rights violation, stigmatisation and discrimination. Deinstitutionalisation is also closely linked to the issue of independent living.
– Carers – as recognised in the Communication, “dementias do not only affect the people with the condition, but also those who care for them.” Carers – and especially unsupported family and informal ones – may also experience stigma, social and economic exclusion and mental health problems as a result of dementia of those they care for.
– Elder abuse – This is also of particular importance to AGE Platform Europe who are currently running an EUSTACEA project and published a Charter of Rights and Responsibilities of Older People in Need of Assistance and Long-term Care.
– Active ageing and intergenerational solidarity – in line with a lack of recognition of importance of prevention and promotion of good mental health, there is a similar underestimation of the mental capital and lifelong learning of older people.
AGE Platform Europe further recommendation on Information and Communication Technologies (ICT) and research – summary
The already mentioned issue of the elderly and clinical trials has to be appropriately addressed. Treatment and medication research in dementia is important but it should be counterbalanced by more investment into prevention and health promotion evidence-gathering research in dementia. In particular, research into preventive, psychoterapeutic and psychosocial, community-based interventions for dementia should be more explored.
Addressing ICT solutions, products and services for elderly people with cognitive problems as well as for their carers has a potential of alleviating the burden of health care costs, as long as these solutions are made available, accessible, appropriate and acceptable, including for vulnerable groups.
The use of ICT can help the elderly and their carers to carry out daily activities, monitor the health status and create or maintain social networks as well as increase participation in society. It can also increase the prolongation of professional participation of older people.
To read EPHA Members Recommendations on Alzheimer`s disease and other dementials please click here.
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EPHA relevant articles
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