Progression of dementia

Dementia is usually a chronic disease in which the mental abilities of those affected decline over time. In order to avoid difficulties in everyday life and problems during estate planning, it is important to be well prepared.

Summary of the most important points

  • Dementia is a neurocognitive disorder. It is usually chronic and can become worse – either progressively or in phases.
  • Signs of dementia include forgetfulness, difficulties with planning and schedules or problems with speech, orientation and motor skills. Personality changes can also occur.
  • Swiss law provides the advance care directive and the patient decree as tools to ensure sufferers of dementia maintain their self-determination. People with dementia should also manage their estate early on.

The typical progression of dementia

Dementia refers to various diseases with similar symptoms. The disease can therefore progress differently depending on the specific diagnosis. However, there are similarities between them, so typical symptoms can generally be described.

In medicine (DSM-5), dementia is a so-called neurocognitive disorder. A distinction is made between mild and major disorders. Mild disorders are those that the brain can compensate for, so limitations are only temporary and those affected can still manage their daily life by themselves. By contrast, the brain is unable to compensate for major disorders, which are further divided into minor and severe major disorders. Dementia is one of the major neurocognitive disorders.

However, this does not mean that a patient’s symptoms can be precisely classified. In fact, these symptoms move in a continuum over time, during which the patient’s mental capacity declines. The continua are also referred to as stages of dementia.

Figure 1: Continuum of the neurocognitive disease. Representation by Prof. Andreas U. Monsch.

What are the most common signs of dementia?

The signs of dementia are varied. But some symptoms do not necessarily indicate that a patient has dementia. Therefore, their overall mental state has to be observed. A suspected case of dementia is confirmed when several of the following signs occur together and often.

A ‘typical’ indication of the start of dementia is forgetfulness, which makes it increasingly difficult for those affected to manage daily matters by themselves, such as planning appointments or finding items. This is closely linked with difficulties in planning simple activities or solving problems, such as planning short trips or cooking simple meals.

As the disease progresses, daily routines become more and more challenging. Examples of this include using electronic devices or paying bills. Difficulties with speech, orientation and motor skills also occur frequently. This means people with dementia have trouble finding the right words or forming sentences that make sense. They can also find it difficult to say where they are, or what date, day of the week or what time it is. Falls or dropping objects are typical examples of the decline in motor skills with dementia.

Dementia sufferers often feel a sense of shame because of these problems. As a result, they may lack motivation and withdraw from society and ultimately become depressed or experience changes in personality. At this stage at the latest, the disease can no longer be hidden from relatives or other caregivers.

What precautions can I take?

Being open about dementia (right from the start) can make the patient’s life as well as the lives of relatives and friends much easier. The first step in a suspected case of dementia is to see medical specialists. They use standardised methods to test cognitive abilities. If the doctor confirms that the patient has dementia, it is important to take precautions in case the disease gets worse. Precautions are therefore of great importance, because after a certain stage of dementia, patients lose their capacity of judgement. Yet this is a prerequisite for many legal and business matters. In certain cases, people lacking capacity of judgement can no longer enter into valid contracts or draw up a will. Arrangements for their estate should therefore be made as quickly as possible in order to avoid a will being challenged after death based on a lack of capacity of judgement.

Persons who lack capacity of judgement are also no longer able to make certain decisions by themselves; therefore, a representative or counsel has to be involved for their protection. Swiss adult protection law provides the advance care directive and the patient decree as tools to maintain the right of every person to self-determination, including in the event of a lack of capacity of judgement. The advance care directive can be used to select people to be in charge of managing their assets, their care and representing them in legal cases. The consent to or refusal of certain medical procedures can be clarified in advance in the patient decree. In this case, it is also possible to involve a natural person as a representative.

Particularly when a patient has dementia, it is advisable, useful and important to make use of these options. They also ensure that well-thought-out and binding decisions can be made, protection is in place, and the patient can look to the future with confidence.

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