Course content – PFLEGE-16
2. Module 1 · What is dementia?
2.1. In depth: course, stages and the German care framework
Course, stages and the German care framework
Course and symptoms
Dementia usually progresses over years, often in stages (mild, moderate, severe). Symptoms include: memory impairment (especially short-term memory – new information is not retained; long-term memory/early memories are preserved for longer), disorientation (to time, place, situation and later to person), language impairment (word-finding, comprehension), impaired thinking and judgement, loss of everyday abilities (dressing, eating, personal hygiene), changes in behaviour and mood (restlessness, withdrawal, anxiety, ‘challenging behaviour’ – Module 4), and finally an increasing need for care. Over the course of the illness, people lose more and more abilities and become increasingly dependent on help.
A crucial point for care: despite the decline in cognitive abilities, feelings and the need for dignity, relationship, security and belonging are often preserved for a long time. People with dementia are feeling persons – they sense whether they are being treated respectfully or condescendingly, whether they feel safe and secure or anxious and alone, even if they can no longer remember details or put them into words. This insight is the key to good dementia care: it is not about halting cognitive decline (that is possible only to a limited extent) but about enabling dignity, wellbeing, security and relationship for the person despite dementia. Medical treatment (medication can in some cases slow the progression/relieve symptoms) is the doctor’s responsibility; humane, person-centred support is the central task of care – and it can have an enormous influence on quality of life.
Dementia: symptoms
| Area | Impairment |
|---|---|
| Memory | New information is not retained |
| Orientation | Time, place, situation, person |
| Language/thinking | Word-finding, judgement |
| Everyday life/behaviour | Loss of abilities, restlessness/anxiety |
Emotional memory remains
A fascinating insight that is significant for care: while factual memory (names, events, time) is increasingly lost in dementia, emotional memory is often preserved for a long time. This means that a person with dementia may no longer be able to remember a conversation, a visit or an action, but the feeling associated with it remains – the joy of a loving encounter, the fear after a frightening situation, the sense of security from a gentle touch. An example: after a friendly visit, the person may not remember the visit itself but is in a good mood afterwards (the good feeling remains); after a frightening situation they are anxious without being able to say why. This insight has major consequences for care: it is worth making every encounter positive and dignified – even if the person will not remember it, it leaves a good feeling. Conversely, haste, harshness or disrespect leave a bad feeling that lingers (anxiety, restlessness, mistrust), even without conscious memory. For care this means: ‘It gets through, even if it is not remembered.’ This insight motivates you to make every encounter with a person with dementia mindful and caring – not for the memory, but for the feeling that remains. It is a strong argument against the thought ‘it doesn’t matter, she’ll forget it anyway’ and in favour of consistently dignified, attentive support. Emotional memory makes it clear: how we treat a person with dementia shapes their wellbeing directly – every encounter counts.
This insight is the emotional core of person-centred dementia care: the person with dementia is and remains a feeling being whose wellbeing we directly influence through our attitude and the way we treat them.
Stages as a rough guide
Figure 1.2 sets out the three stages named above. Treat it as a map, not a timetable. Some people stay in one stage for years, others change quickly after an illness, a hospital stay or a move. In the mild stage, the person often knows that something is wrong, and this awareness can bring fear, shame or low mood. Clear routines and quiet reminders help most. In the moderate stage, orientation and language break down more, and help with washing and dressing is needed; this is often the time when restlessness and misunderstandings increase. In the severe stage, speech may be very limited. The person depends on you to read the signs of comfort and distress: face, posture, breathing, muscle tension.
The band at the bottom of the figure is the most important part. At every stage, the person is a feeling human being. They notice if you are kind or hurried, even when they cannot name it.
Dementia worldwide
The WHO (2026) estimates that about 57 million people lived with dementia worldwide in 2021, and that about 10 million new cases occur every year. It reports that Alzheimer disease is the most common cause, accounting for an estimated 60 to 70 per cent of cases. Figure 1.3 redraws these figures. The WHO also notes that unpaid carers, mostly family and close friends, provide a large part of the care. This is why later modules (see Module 10) give so much room to relatives.
Note what the bar does not say. It does not tell you how many people in your own setting have Alzheimer disease. It also does not show how many have mixed forms, which are common in practice. It is a global estimate, nothing more.
What can look like dementia
Several conditions can resemble dementia or make it worse. Delirium, a sudden state of confusion often caused by infection, pain, dehydration or a change of surroundings, is the best known. Depression, vitamin deficiencies, thyroid problems, hearing and vision loss and some medicines can also play a part. As general professional knowledge: a sudden change in a person’s state is always a reason to alert the nurse in charge or the doctor on the same day. Do not wait for the next routine round and do not assume it is “the dementia getting worse”.
In Germany: how dementia appears in the care system
Care in Germany is organised by the Social Code Book XI (SGB XI), the law on social long-term care insurance. Four points matter for dementia care.
- What counts as “in need of care”. Section 14 SGB XI looks at six areas of life, among them cognitive and communicative abilities, behaviours and psychological problems and shaping everyday life and social contacts (Bundesministerium der Justiz, n.d.-a). This is why dementia, with little physical illness, can still lead to a high level of support.
- Five care levels. Section 15 SGB XI sets five Pflegegrade (care levels, 1 to 5), based on a scored needs assessment with six modules (Bundesministerium der Justiz, n.d.-b).
- Aim of care. Section 2 SGB XI says that care benefits should enable a life that is as independent and self-determined as possible and that corresponds to human dignity (Bundesministerium der Justiz, n.d.-c).
- Extra time for people in care homes. Section 43b SGB XI gives residents of inpatient facilities a right to additional support and activation beyond basic care (Bundesministerium der Justiz, n.d.-d).
On the policy level, the National Dementia Strategy has four fields of action: taking part in community life, support for those affected and their relatives, medical and nursing care, and research. It contains more than 160 measures and has been put into practice since September 2020 (Federal Ministry for Family Affairs, Senior Citizens, Women and Youth [BMFSFJ], 2022). You do not need to know the measures by heart. It helps to know that dementia is treated as a task for the whole of society, not only for care homes.