EFNA endorses joint Alzheimer’s white paper

EFNA endorses joint Alzheimer’s white paper setting out strategic vision on policy action to deliver better care for people with Alzheimer’s, their families and their carers in Europe

The white paper, Driving policy to optimise care for people with Alzheimer’s disease in Europe today and tomorrow, outlines clear priorities for change and proposes ideas for specific policy actions, which, if implemented, would significantly improve the care for people living with AD and the experience of their families and carers across Europe by supporting more patient-focused and sustainable care. The paper was developed collaborative by a number of stakeholders including EFNA, the European Brain Council and MSD.

Of today’s publication of the white paper, Joke Jaarsma (EFNA President) says:

The issues highlighted here are relevant not just for AD but, in many cases, for neurological disorders more generally. Progress made in the field of AD, can and should be replicated for other neurological disorders where we are also faced with similar challenges from social, economic and ethical perspectives. With more than 1 in 3 people facing the prospect of living with a neurological disorder in their lifetime, and spiralling costs for healthcare systems globally – together we must work to tackle the impact and burden of these disorders on our societies. This paper sets out a clear map to be followed by policy-makers and decision-makers to lessen the burden of AD in Europe. Success here could create a path for other brain disorders to follow in the future – leading to a better quality of life for all neurology patients, their families and wider society.

The priorities for change and ideas for actions presented in the paper stem from the What if series of three policy roundtables hosted by leading MEPs in Alzheimer’s from September 2017 to October 2018. The roundtables were based on the following three keys areas for action:


Ethics: Overcoming the ethical challenges of early detection and diagnosis

Medical science and our understanding of AD and dementia are progressing. Evolving biomarker research in particular has increased the likelihood of identifying lesions of AD type even at the asymptomatic stage. As this asymptomatic stage has become a major focus of research, the ethics of early detection and diagnosis have been thrust into the spotlight.


The right to dignity: Overcoming the stigma, discrimination and inequalities faced by people with Alzheimer’s disease

AD is often a difficult diagnosis for the individuals affected and for their families. In addition to the uncertainty around how the disease might progress in the future, the lives of people with the condition and their carers are all too often marked by debilitating stigma, discrimination and inequality in access to care and treatment – all of which impact people’s fundamental human rights.


The “silver economy”: The socioeconomic impact of Alzheimer’s disease in Europe

The social and economic cost of AD has been well documented and currently amounts to some €251bn in Europe. Total costs in AD result from direct costs (e.g. money spent on diagnosis, follow-up or treatment) and indirect costs, which are harder to quantify and related to resources (ie. money and time) lost because of the disease. Costs increase as AD grows in severity.

Each area for action concludes with a set of policy recommendations endorsed by the collaborative parties of the paper to advance progress in a particular area and deliver a better today and tomorrow for people with Alzheimer’s, their families and their carers. A set of overall policy recommendations is also included in the pursuit of policy change across the key areas for action.

As we approach the 2019 EU elections, the white paper and its policy recommendations provide a valuable resource to inform the health policy agenda and policy action on national and EU level. In keeping with the paper’s stress on ensuring a better future for people with AD, their families and carers, the paper was launched at the Wednesday 21 November meeting of the Brain, Mind and Pain MEP Interest Group – Future of Healthcare in Europe – What next for brain, mind & pain?