Many Dutch people with a brain disorder are not understood

Editorial Medicalfacts/ Janine Budding May 20, 2023 – 7:58 PM

More than eight in ten Dutch people with a brain disorder sometimes experience incomprehension as a result of their disorder. More than a quarter of them experience this incomprehension to a (very) strong degree. Before the start of the ‘Together for Understanding’ campaign, the Hersenstichting, together with research agency Kien Onderzoek, gauged the level of understanding for brain disorders.

More than four million Dutch people suffer from a brain disorder such as Parkinson’s disease, dementia, depression, anxiety disorder or migraine. Brain disorders, such as a stroke, a traumatic brain injury or a neurodegenerative disorder, can have invisible consequences. These consequences can range from feelings of overstimulation and fatigue to problems with memory and concentration. For most people, these consequences are invisible. This can lead to misunderstanding and frustration for the person who has the brain disorder and those around them.

Brain disorders

More than four million Dutch people suffer from a brain disorder such as Parkinson’s disease, dementia, depression, anxiety disorder or migraine. Brain disorders, such as a stroke, a traumatic brain injury or a neurodegenerative disorder, can have invisible consequences. These consequences can range from feelings of overstimulation and fatigue to problems with memory and concentration. For most people, these consequences are invisible. This can lead to misunderstanding and frustration for the person who has the brain disorder and those around them.

Incomprehension

Little is known about the degree of misunderstanding of a brain disorder and its impact. The Hersenstichting, together with research agency Kien Onderzoek, surveyed 1000 Dutch people – who themselves have a brain disorder or know someone in their immediate environment with a brain disorder – to what extent people experience a lack of understanding about a brain disorder.

The misunderstanding is often because it is not visible on the outside that someone has a brain disorder. More than half indicate that they experience a (very) strong degree of incomprehension due to fatigue (53%) and overstimulation (51%).

The misunderstanding is often expressed in impatience, thinking that someone is acting up, not taking it seriously, not taking into account, finding someone strange or strange, and thinking that someone is stupid. More than a quarter experiences daily incomprehension because of the brain disorder (26%) and another third suffers from it every week (36%).

It is striking that people mainly experience incomprehension from friends and family (both 44%), in addition also from government agencies (28%), employer (20%) and doctors/care professionals (20%). Young people (<30 years) more often experience incomprehension from the employer (49% vs. 25%) and doctors/care professionals (47% vs. 24%) than the over-30s.

95% of the respondents indicate that the misunderstanding has some influence on him or her as a person. This is most strongly experienced in working life; 48% indicate that the misunderstanding here has a (very) strong influence on the person. Incomprehension in social life (41%) and not being able to participate in society (40%) also have a (very) strong influence on the person for four out of ten.

Together for Understanding

This week, the Brain Foundation is launching the campaign ‘Together for Understanding’ and, together with well-known Dutch people, draws attention to the invisible consequences of brain disorders and argues for more understanding and recognition for this. The campaign runs from May to July 2023.

This week, the Brain Foundation is launching the campaign ‘Together for Understanding’ and, together with well-known Dutch people, draws attention to the invisible consequences of brain disorders and argues for more understanding and recognition for this. The campaign runs from May to July 2023.

Source: The Brain Foundation

Editorial Medicalfacts/ Janine Budding

I have specialized in interactive news for healthcare providers, so that healthcare providers are informed every day about the news that may be relevant to them. Both lay news and news specifically for healthcare providers and prescribers. Social Media, Womens Health, Patient advocacy, patient empowerment, personalized medicine & Care 2.0 and the social domain are spearheads for me to pay extra attention to.

I studied physiotherapy and Health Care business administration. I am also a registered independent client support worker and informal care broker. I have a lot of experience in various positions in healthcare, the social domain and the medical, pharmaceutical industry, nationally and internationally. And have broad medical knowledge of most healthcare specialties. And of the care laws from which the care is regulated and financed. Every year I attend most of the leading medical conferences in Europe and America to keep my knowledge up-to-date and to keep up with the latest developments and innovations. Currently I am doing a Masters in Applied Psychology.

My posts on this blog do not reflect the strategy, policy or direction of any employer, nor are they work by or for any client or employer.

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