Many people might ask, why do we need another book on dementia, or in this case Alzheimer’s disease?
In the following article, I will explain what inspired and motivated me to write ‘Tangled Up – The science and history of Alzheimer’s disease’. Hopefully, this will make clear why I wrote this book and also gives a direct insight into why included certain parts of the book. Enjoy.
There have been many excellent books written on dementia. In particular, many carers or family members share their stories of the journey with dementia. These are often harrowing but also uplifting books, which demonstrate our resilience to adversity and how we overcome these challenges during our journey with dementia.
Then there are the books written by medical and care professionals on how to deal with or manage dementia symptoms best. Again, these books are of particular relevance for the dementia community, as they provide information on how to best manage the dementia journey.
Despite these excellent books, there is a gap, in my opinion, in that there are virtually no books available explaining the science and history of the diseases underlying dementia. Most dementia books touch upon the science of dementia by talking about how symptoms might appear and what might cause them. But there are, to my knowledge, no books out there explaining in detail what actually causes the diseases and how this explain the symptoms.
My new book ‘Tangled Up – The science and history of Alzheimer’s disease’ tries to bridge this gap by providing people with a detailed insight into the science of Alzheimer’s disease and, therefore, what actually causes Alzheimer’s disease and how the science explains the symptoms and risk of Alzheimer’s disease. Of course, there exist already many excellent websites which try to explain the science behind Alzheimer’s disease, including this one but, to my knowledge, there is no book that summarises all this information in one place. ‘Tangled Up’ is the result of summarising all this information in one book.
Importantly, ‘Tangled Up’ is specifically written for the science and history of Alzheimer’s disease and not dementia in general. The reason why I focused the book on Alzheimer’s disease is that it would be a Sisyphean task to write a book explaining the science on all types of dementia, as they have different causes. Instead, it is better, in my opinion, to be more specific for each type of dementia and provide in-depth insights into the science of that particular type of dementia. This will allow us to understand much better the underlying causes but also the risks of developing this type of dementia. Instead of having some woolly statements like ‘dementia is caused by proteins accumulating in the brain’, we can actually explore which are those proteins and why are they accumulating and why does this cause dementia? Answering those questions has been my quest for ‘Tangled Up’.
Does this mean that I have to have a science degree to understand ‘Tangled Up’?
Far from it, the book is written so anyone should be able to follow the science explained in the book, although some parts are more challenging to understand than others. I tried very hard to simplify the science without ‘over-simplifying’ it so that you will get the essence of the science behind Alzheimer’s disease. Admittedly, the real science is more complex but the purpose of the book is not to become a dementia scientist – although I would be delighted if you would – but to understand the science of Alzheimer’s disease.
What about the history of Alzheimer’s disease, which is also mentioned in the title?
Good point. When writing the book, I quickly realised that it is very difficult to understand the science of Alzheimer’s disease without explaining how Dr Alois Alzheimer actually discovered the disease. For good measure, I added then more information on the history of Alzheimer’s disease, in particular Alois Alzheimer’s life but also more information on Mrs Auguste Deter, the first person diagnosed with Alzheimer’s disease. Finally, I am trying to ‘resurrect’ a forgotten hero of the discovery of Alzheimer’s disease, Dr Oskar Fischer. Fischer was, arguably, more pivotal for the discovery of the disease we call these days Alzheimer’s disease and frankly the disease should be called Fischer-Alzheimer’s disease to give him the due credit he is due. But life was cruel to Fischer, not only was he not recognised for his contribution to ‘Alzheimer’s disease’ but he died forgotten in a Nazi concentration camp in 1942. It was important for me to highlight Fischer’s contribution to the early discovery of ‘Alzheimer’s disease’ in the book, as even most dementia specialists will not have heard of Fischer – ever. It is time to change that and recognise his contribution.
What about the rest of the book?
The book is structured into five parts, with the first part conveying the history of Alzheimer’s disease, as it provides a good starting point of the book. The second part goes then into more detail into the main symptoms of Alzheimer’s disease – memory and spatial orientation difficulties. First of all, I explain how memory ‘works’ in the brain. Many people might not be aware of how our memory works but we need to learn this before we can understand how the specific memory symptoms emerge in Alzheimer’s disease. Once we know how memory works and which brain regions are responsible for it, we can start to see why the damage in those brain regions caused by the proteins in Alzheimer’s disease causes the typical symptoms we see in people with the disease. To make the real-world relevance clear I provide an example of a clinical interview with someone with early Alzheimer’s disease which showcases the symptoms and how we can understand them better. The final chapters of the first of the book are then devoted to spatial disorientation and getting lost in Alzheimer’s disease. Spatial disorientation is often overlooked as a symptom in Alzheimer’s disease but can have far more devastating consequences as memory problems since people with Alzheimer’s disease can get lost. Getting lost is a big problem and can not only cause harm or even death to the person but also increase carer burden significantly and leads often to care placements. Explaining, therefore, spatial orientation, how it works and why Alzheimer proteins affect the brain regions important for our spatial orientation was a critical aspect for me.
We are then ready to take a deep dive into the biology of Alzheimer’s disease in the third part of the book by exploring how two proteins (amyloid, tau) are the causes of Alzheimer’s disease. We will first explore what the normal functions of amyloid and tau are in the brain before then exploring what goes ‘wrong’ with these proteins when we develop Alzheimer’s disease. The final chapters of this part are then focused on current treatment approaches for amyloid and tau which might lead to future Alzheimer’s disease medication – like the recently approved Aduhelm (see also my blog post on this here). We will also explore why it has and still is taking so long to develop new medication for Alzheimer’s disease despite us having such a detailed understanding of what goes wrong with amyloid and tau.
The fourth part of the book explores one of the most commonly asked questions for Alzheimer’s disease. Can I inherit my risk for Alzheimer’s disease from my parents via their genes (the short answer is: In principle, yes but it is highly unlikely)? This part of the book is, therefore, focused on the genetics and risk factors for Alzheimer’s disease. The first few chapters explore the genetics of Alzheimer’s disease and explain how our genes influence our risk for Alzheimer’s disease. Admittedly these genetic chapters are some of the most complex in the book since genetics in itself is a vastly complex scientific area. But fret not, I have tried to keep it as simple as possible and there is also a summary at the end of each part of the book, summarising the take-home messages. The latter chapters of part four explore then our lifestyle risk factors for Alzheimer’s disease which are far more relevant for our risk of Alzheimer’s disease than our genes. We will go through the main lifestyle risk factors and how we can potentially modify our lifestyle to reduce our risk for Alzheimer’s disease. This part of the book should provide some hope that we can influence our risk for Alzheimer’s disease significantly just by adjusting our lifestlye.
The final and fifth part of the book explores then the rarer forms of Alzheimer’s disease – namely, Posterior Cortical Atrophy, frontal/dysexecutive Alzheimer’s disease, Logopenic Primary Progressive Aphasia and Corticobasal Degeneration. Never heard of them? Don’t worry, neither have many dementia professionals. The rarer forms of Alzheimer’s disease are virtually never discussed despite still many people having these forms of Alzheimer’s disease. This part of the book explains that the underlying changes to amyloid and tau are identical in those rare forms of Alzheimer’s disease compared to the common form. We explore then how these different symptoms in the rare form of Alzheimer’s disease can be explained, despite them all being caused by amyloid and tau. There is such a dearth of information on those rare forms of Alzheimer’s disease, therefore, this part of the book was the hardest to write since we do not yet fully understand the science of those rarer forms. But it clearly was a very important part of the book to include, as many people, including many dementia professionals, still get confused with the different forms of dementia and do not realise that those above forms of dementia are actually rare forms of Alzheimer’s disease. Hence, the importance of this part of the book.
Last but not least, I had excellent input and feedback from laypeople, carers and people with dementia for the book. Without them, the book would have certainly not been the same and I would like to say thank you to them. Finally, just to say, that I had a lot of fun writing the book. I have to admit, it was challenging at times, in particular to convey the complex science in a lay friendly way but overall it was so much fun and I am planning to write future books on similar topics. I really hope my enjoyment of the book will come across and you will enjoy reading the book, while also discovering the history and science of Alzheimer’s disease.
Here some links for checking or purchasing the book, or alternatively search for the title on your country specific Amazon website:
You can also read of a sample of the content here.
If you purchase a copy of the book, please leave an honest review on Amazon, as it will allow other people to find the book.
2 thoughts on “Tangled Up – The science and history of Alzheimer’s disease”
I wish someone would do the same for PCA, there is so little out there for professionals let alone us with it!
I intend to write a pamphlet about it..
I agree Martin. My book only has one chapter on PCA but there is so much more to explain.