FOCUS online: Mr. Herzog, you are the head of the dementia day clinic in Munich. What dementia symptoms do you notice first?
Jürgen Herzog: It usually starts with small memory lapses. In particular, small everyday details are no longer necessary, especially if you want to recall them spontaneously. Small facts that were completely familiar are lost – street names or the name of the neighbor, for example. Another early warning sign is increasingly poor orientation, especially in unfamiliar surroundings. And what is often noticeable is an impoverishment of the language. Sufferers tend to use simpler words and shorter sentences or stop in the middle of a sentence and can no longer finish their thoughts.
When should I worry?
Herzog: Well, especially if these symptoms progress particularly quickly, i.e. get significantly worse within six months. Or when the restrictions become so severe that more and more outside help becomes necessary in everyday life. And last but not least: of course, if such symptoms are noticed unusually early, i.e. before the age of 60.
Dementia is incurable. Nevertheless, early diagnosis is important. Why?
Herzog: Because this way you can take countermeasures as early as possible. And so now, but especially in the future, symptoms can be improved with medication and non-medication measures.
Which measures specifically help?
Herzog: We know that some factors can play a protective role. To do this, the dementia risk factors must be minimized as much as possible. These include hearing loss, obesity, smoking, alcohol consumption, lack of exercise, social isolation, but also diabetes and high blood pressure.
This is precisely why age-related hearing loss should not only be treated from the perspective of an ENT doctor, but also with a view to preventing dementia; we see a major positive effect here. You should not smoke and drink little or no alcohol. But regular exercise and a healthy, balanced diet are also beneficial.
However, there is currently conflicting data on nutrition. According to a current study, the actually recommended MIND diet cannot really influence the progression to dementia or cognitive problems in healthy older people. Nevertheless, I think it makes sense for most people. Because we shouldn’t just focus on the brain, but the entire cardiovascular system. And here we know that the MIND diet, i.e. a low-meat diet with lots of fruit and vegetables and rich in unsaturated fatty acids, has a positive effect.
Can you tell us what you do to protect yourself from dementia?
Herzog: [lacht] I already do quite a lot. However, I have to be honest and say that I do this for my overall health. I consciously try not to think too much about dementia. Because you also have to say: around 60 percent of the factors are genetic. That means it lies dormant within us, whether we want it or not.
But what I strongly believe in, and I recommend it to all patients, is regular exercise, especially endurance sports. For example, I enjoy cycling or running a lot. I also strive for mental stimulation. My job makes it relatively easy for me because you are constantly required to keep yourself informed and continue your training. But I try to cultivate not just professional interests, but as many and broad interests as possible – taking advantage of cultural offerings, learning foreign languages, reading a lot, surrounding myself with young people. This interaction is a very strong protective factor. And I try to eat a healthy and balanced diet, really according to the aforementioned MIND diet.
But of course I also have my vices. On a nice evening I also like to drink a glass of wine… or two.
The diagnosis is often a shock for relatives. What do you advise you?
Herzog: I think it is appropriate to treat those affected as equals for as long as possible. So don’t patronize them or interrupt them. And don’t exclude them from certain activities from the outset.
Second, wherever possible, try to provide the greatest possible flexibility for the behavior and spontaneous ideas of dementia patients. In my experience, they can still do a lot in the early to middle stages. You just can’t always access or achieve it precisely. That’s why it’s helpful to postpone things, postpone them or even let them go.
And thirdly, we also try to convey this in family seminars: try as much as possible to put yourself in the perspective, in the reality of life, of these patients with a completely changed perception of their own environment. Don’t argue with classic verbal logic, but rather that it makes sense for those affected. You can imagine it something like this: How would I feel if I fell asleep now and woke up again after 30 years in a completely different world – with oversized cars, extravagant fashion and completely new realities such as working from home. This is roughly what it feels like for those affected, who often live very much in the past.
Is it better not to contradict people with dementia at all?
Herzog: I wouldn’t advise that. But you should think carefully about where and when you object. Relatives often argue with patients over trivialities or recurring, recurring points. It’s often like a mediocre marriage: In the end, it’s not worth the conflict at all. Especially since the patients quickly forget the argument and it is resolved anyway.
But that doesn’t mean that you shouldn’t generally set boundaries. There is challenging behavior, there are insulting, hurtful comments. You can reflect on them and say ‘no’ clearly – both for reasons of your own psychological hygiene and in a sensible manner.
It’s particularly painful when your partner no longer recognizes you…
Herzog: That’s right, it’s very hard at first. The important thing here is not to take it too personally. And it is not constant, but occurs in phases or episodically.
Ultimately, you can also try using a few tricks to make yourself visible. For example, you can use your usual perfume or aftershave from before, or sing or whistle a song together. So come via smell or hearing – that often works very well.
There is also an Alzheimer’s drug that currently offers great hope.
Herzog: Correct. Two Alzheimer’s drugs are already approved in the USA: Lecanemab and donanemab. Both affect the Alzheimer’s-related protein deposits in the brain, which contribute to cognitive decline. Lecanemab is also expected to come onto the European market, hopefully this year. And yes, I think relatively highly of it because it is the first drug that actually has a disease-modifying effect.
Of course, there are still many question marks. According to studies, the effectiveness is not yet such that it really reverses the course of the disease. The safety aspects also need to be critically weighed up and the entire supply aspect – what do we actually do with the substance? Who should administer it? Who should receive it? Where can monitoring take place? – is still unclear.
Nevertheless, there is probably hardly a drug for such a common disease that presents so many difficulties and at the same time offers so much hope. Because it is simply the first thing that actually gives us some access to the disease.
Keyword “security aspect”. Are you talking about possible side effects?
Herzog: Exactly. In the approval studies, two in particular were noticed with a very relevant frequency: cerebral edema, i.e. tissue swelling in the brain, and small, so-called microbleeds.
This phenomenon, which is initially noticeable in imaging, is called “amyloid-related imaging abnormalities” (ARIA). So you know it’s probably a normal part of this clearing process. For example, if you hit a part of your body, swelling, i.e. edema, initially forms as a normal part of the healing process. The bleeding is most likely due to a temporary change in the permeability of the vessel walls. The good thing is that in the registration studies, edema and microbleeds were, in most cases, asymptomatic. So most patients didn’t even notice these side effects; they were coincidental findings during magnetic resonance imaging.
However, we have to be realistic: We don’t yet know what the drug will do in the long term. And whether this might make the brain more susceptible to other problems in a few years.
And it’s only suitable for patients in the early stages of dementia, right?
Herzog: Yes, and that will probably be the crucial question. Do patients in a phase in which they still have very few symptoms want to be treated with a medication that also carries risks? It’s always a matter of balancing… I think you can expect a moderately good effect with the currently available substances.
What do you think: Will dementia become curable, perhaps even soon?
Herzog: Certainly not soon. And I don’t really believe that dementia can be cured. It is simply far too complex a systemic disease of the entire brain, the cause of which actually lies in the genes. But I am very confident about significantly improved diagnostics and treatment options in the next ten to twenty years. That we can make dementia a disease that is significantly less scary.