A new era for Alzheimer’s (W4)

Alzheimer’s treatment on the horizon: are we up for it?

A treatment for Alzheimer’s is about to see the light – this was at the base of the workshop “New era for Alzheimer’s: are EU healthcare systems ready for medical innovations”.

A necessary clarification is that this is a disease-modifying treatment – an expression that may mean very little to patients and their families, as argued by the audience. In fact, the anti-amyloid antibodies do not cure the disease itself, they slow down the process of cognitive decline. Alzheimer’s is an irreversible disease, but you can delay its last stage of severe dementia.

Raphael Wittenberg, Associate Professional Research Fellow, London School of Economics, and Antonia Croy, President of Alzheimer’s Austria

This comes after several years of research and failure. Many patients were left with the false hope that “there will be a scientific breakthrough in the next 10 to 15 years”, as narrated by patient advocate Antonia Croy from Alzheimer’s Austria, in her presentation 38 years after hearing it for the first time.

Now treatment is not an abstract idea, it is very near. But it will only work with early detection of disease.

The main point of discussion during this workshop was the recent publication of the RAND report, which assessed the preparedness of health systems in six EU countries to deliver the future Alzheimer’s treatment. Quite disappointingly, it seems that these countries would struggle to timely diagnose the disease and therefore to deliver effective treatment. This would be due to a combination of healthcare staffing shortages and infrastructural weaknesses that lead to excessive waiting times. Perhaps the most troubling point was that these shortcomings could lead to progression of the severe disease among up to one million patients, something which could have been avoided if health systems were better equipped.

Urgent action is needed – such a situation has so many ethical problems that could not possibly be ignored.

Another issue raised was the challenging measurement of cost-effectiveness for treatment of this disease. Alzheimer not only affects the patients but also their families and friends. If we want to truly measure the impact of this disease we must take a societal perspective of its associated burden. Extremely important in this type of diseases is the role of informal carers, whose role is often underestimated.

But most importantly, in the early stage of disease, Alzheimer patients are still able to communicate their needs and should not be infantilized or dismissed. This carries the threat of early withdrawal from active participation in society, and acceleration of cognitive decline. Adequate counselling for the families and communities is urgently needed to ensure patient empowerment.

After more than 20 years of failure, times of optimism are finally coming. Our systems need to make sure they are up for the challenge.

 

This Blog was written by the  Young Gasteiner Maria Moitinho de Almeida

 

 

 

 

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