By Brian Johnson - 10th July 2013
People with multiple sclerosis desperately want to work, but employers simply do not want to risk employing someone with a fluctuating health condition
Brain diseases are a major societal burden, costing around €800bn a year in the EU
The question therefore is how can we help people with Dementia stay in the workplace for as long as possible?
The neurodegenerative diseases community needs the support of policymakers to ensure that people can stay for as long as possible in the workplace
Working helps avoid the negative impacts of unemployment – the loss of income, lack of self worth and the risk of social exclusion
MEPs are set to draft a written declaration aimed at improving the quality of life of people living with chronic degenerative brain diseases.
The pledge to table a written declaration was unveiled by Austrian ALDE deputy Angelika Werthmann at an event in the European parliament on Tuesday and is expected to be drawn up after MEPs return from their summer break in September.
Werthmann, a vocal campaigner on issues surrounding neurodegenerative diseases, told participants that the increasing prevalence of people suffering from conditions such as Parkinson's disease, Alzheimer's and multiple sclerosis highlighted the need for both national and EU policymakers to provide sufferers with "better opportunities within Europe".
Increasing awareness, workplace adaptations and early diagnosis can help lessen the impact of neurodegenerative diseases, as well as reducing healthcare costs, allowing people to, "remain as active as possible in the workplace", said Werthmann.
"The neurodegenerative diseases community needs the support of policymakers to ensure that people can stay for as long as possible in the workplace."
Her comments were echoed by Heather Clarke from the European Parkinson's disease association who said that action by both employers and governments to help people with chronic degenerative brain diseases remain in the workplace was fast becoming a priority issue, both economically and socially.
Clarke, the association's European political affairs officer, warned that Europe's ageing population will mean that long-term chronic conditions such as Parkinson's will become more common in the near future
"The number of people with Parkinson's disease will double by 2030 and with it the economic burden. Keeping people in the workplace for longer reduces the economic cost to society," said Clarke.
"Europe needs workers to counter the shrinking workforce. Working helps avoid the negative impacts of unemployment - the loss of income, lack of self worth and the risk of social exclusion."
Annette Dumas, Alzheimer Europe's EU public affairs advisor, explained that there were, "many challenges faced by people suffering from neurodegenerative diseases in remaining in the workplace", such as a lack of awareness or misunderstanding by employers and work colleagues, discrimination and social support as well as physical factors such as diminishing performance.
"Diseases such as dementia are a big societal challenge. It's a very costly disease and the number of people with dementia will increase.
"The question, therefore, is how can we help people with Dementia stay in the workplace for as long as possible?"
Dumas outlined several recommendations aimed at assisting people to stay in work, including raising understanding within the workplace of the effects of neurodegenerative diseases and the involvement of sufferers in planning services and policies.
EU actions on tackling neurodegenerative diseases were highlighted by Philippe Cupers, head of neurosciences in the European commission's research directorate.
Understanding neurodegenerative diseases was still one of the world's "greatest scientific challenges", said Cupers, adding that, "brain diseases are a major societal burden, costing around €800bn a year in the EU."
"Within the EU's 2007-2012 seventh research framework programme, over €1.9bn was spent on brain-related research on more than 1000 different projects, while research on neurodegenerative diseases was a key FP7 priority, with around €400m in support."
Cupers highlighted the importance of the EU's joint programming initiatives, particularly one on neurodegenerative disease, which he said had been successful in "aligning national research agendas and reducing duplication".
Further comment came from Shana Pezaro from the European multiple sclerosis platform, who outlined her experiences of staying in employment following her diagnosis of the disease when she was aged 28 and called for concrete measures to support people with neurodegenerative diseases.
Around half of those diagnosed with multiple sclerosis (MS) stop working within three years, a timeframe earlier than their condition actually requires.
"People with multiple sclerosis desperately want to work, but employers simply do not want to risk employing someone with a fluctuating health condition… [but] employment is the single most important factor in the global economic burden of multiple sclerosis. Many people with MS could work, if only they had the right infrastructure," said Pezaro.
The three co-organisers of the event, the European multiple sclerosis platform, Alzheimer Europe and the European parkinson's disease association outlined four key actions that they believe will help people remain employed: raising awareness through education and training of employers and colleagues, adapting social legislation to offer better protection, work place adaptations - allowing people to work with their remaining competencies, and early access to diagnosis and treatment that would allow people to remain professionally active for longer.
Closing the event, Werthmann pledged to table the written declaration by early Autumn, saying, "We are the politicians, we are the stakeholders and we will be asked urgently to take the appropriate steps. I do not think I'm being too optimistic if I aim to have the written declaration ready by September-October."