Dementia: What exactly is this disease?

More and more people are suffering from dementia. There are currently around 1.7 million people affected in Germany and around 40,000 more are diagnosed every year. The risk increases with age.

What kind of illness is “dementia” anyway?

Translated from Latin, dementia means “away from the mind” or “without mind”. This describes the main characteristic of dementia: the deterioration or even loss of mental abilities.

The disease often begins with poor short-term memory and problems with retention. What is initially reminiscent of “normal” forgetfulness gradually develops. The content of the long-term memory also gradually disappears and with it many learnt skills. However, dementia is actually much more than a memory disorder. As the disease progresses, there is an increasing impairment of attention, language, comprehension, thinking and orientation. Dementia shakes a person’s entire being – their perception, behaviour and experience.

Dementia is the generic term for more than 50 different forms of the disease, including Alzheimer’s – probably the best-known form. A basic distinction is made between the primary and secondary form. In the primary form, the disease originates in the brain. The primary form accounts for 90 per cent of dementia diseases and is currently incurable. This includes Alzheimer’s disease as the most common form of dementia and vascular dementia as the second most common. The secondary form occurs much less frequently. These are secondary symptoms of other underlying diseases, such as metabolic disorders, vitamin deficiencies and chronic intoxication caused by alcohol or medication. These underlying diseases are treatable and in some cases even curable. It is therefore also possible to reverse the symptoms of dementia. Unfortunately, this only affects around 10 per cent of dementia cases.

How does dementia manifest itself? Signs and symptoms

As dementia begins with a deteriorating short-term memory and problems with memory, it is initially difficult to distinguish dementia from “normal” forgetfulness. Particularly in the early stages of the disease, many sufferers try to hide their problems from others and cover up memory gaps with the help of reminders. Sometimes they react aggressively or dismissively when problems or mishaps are mentioned.

The following symptoms may indicate dementia:

• Increasing forgetfulness, when appointments or doctor’s appointments are forgotten more and more frequently.
• Gaps in memory when a recent event is forgotten or the contents of the newspaper you have just read can no longer be reproduced.
• Speech difficulties when individual words are missing in conversation or longer sentences can no longer be completed.
• Changes in mood when sufferers themselves realise that something is wrong, they often try to hide this from others. It scares them, which can lead to uncontrolled emotional outbursts and previously unknown mood swings.
• Growing mistrust when short-term memory deteriorates and everyday situations no longer make sense. For example, missing money – because how are those affected supposed to know that they have just spent it themselves?
• Disorientation in terms of time and space, when those affected can no longer find their way home or can no longer find their way around the regular daily rhythm.
• Social withdrawal, when those affected withdraw from social life out of fear or shame.
• Change in judgement when the way money is handled suddenly changes for the worse, large sums of money are spent or less attention is paid to cleanliness and hygiene.
  Misplacing/ misplacing things when items are put in unusual places and the steps to get there can no longer be retraced.

Note: The risk of developing dementia generally increases with age. While less than two per cent of 65-69-year-olds are affected, the figure is already over 30 per cent for over 90-year-olds.

Suspected dementia: what to do?

Under no circumstances should the suspicion of dementia be suppressed: An early diagnosis can ensure that those affected and you as a relative have access to possible support services.

The first step should be to talk to the person concerned. It is important to find a good time for this and to deal with the situation sensitively, i.e. do not make accusations but give concrete examples to illustrate the change. What changes have you noticed? What worries you?

The second step is to make an appointment with the family doctor. Ideally, the person concerned will already be known as a patient there. They will discuss the symptoms and carry out initial examinations (for example, the well-known clock test). The next step may be a referral to a specialist. If necessary, the doctors will also recommend a visit to a memory outpatient clinic, i.e. facilities in clinics that specialise in dementia.

Note: If the person concerned does not take your suspicions seriously, it can be helpful to document the behaviour over a longer period of time. Several people should be involved, for example relatives, friends or neighbours. A doctor can use such a list to make a preliminary diagnosis.

Once the diagnosis has been confirmed, there is a lot to do and prepare for. If the dementia is still in the early stages and there are no precautionary documents yet, these should be drawn up as soon as possible:

• Draw up a power of attorney for healthcare – this allows relatives to be appointed to represent the person concerned in a legally binding manner as soon as they are no longer able to carry out certain tasks.
• A care directive can supplement the power of attorney – which is bound by the local court.
• The living will ensures that medical decisions are made in the best interests of the person concerned. To this end, it specifies in writing in advance whether and how medical treatment should take place in certain situations.

Dementia prevention: what is possible?

The causes of dementia have not yet been fully researched. However, experts assume that certain factors can favour dementia:

• Diseases such as diabetes mellitus (diabetes), obesity (overweight), thyroid disorders and depression.
• Addictive substances such as smoking, drugs or excessive alcohol consumption, but also medication or medication abuse
• A lack of exercise, vitamins or sleep and an unhealthy or unbalanced diet
• Little education or little “brain training” through reading or similar.
• Social isolation

Conversely, attention should be paid to a healthy lifestyle in order to minimise the risk of developing dementia in old age: mental activities, sport and a healthy diet. Physically, a stable blood pressure, a cholesterol level within the normal range and an appropriate body weight are important and helpful. A hearing aid can also help prevent dementia, as people who cannot hear properly are at an increased risk of dementia in old age.

More information and further links:

• The Wegweiser-Demenz.de from the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth offers various information, films and helpful addresses.
• The Deutsche Alzheimer Gesellschaft e.V. (German Alzheimer Society) offers extensive information on the clinical picture, various counselling services and regional Alzheimer societies and counselling and contact points.
• The Federal Ministry of Health has published a dementia guide with information on home care for people with dementia