Course content – PFLEGE-16
The modules of this course – work through them in order.
3. Module 2 · Understanding the inner world
3.1. In depth: time, needs and the legal frame
The inner world: time, needs and the legal frame
The reality of the person with dementia
For people with dementia, reality often shifts – especially in the advanced stage they increasingly live in their past and in their emotional world. A 90-year-old woman may experience herself as a young mother who has to get to her children (long since grown up or deceased); an old man may believe he has to go ‘to work’. For the person this is real – it is not ‘madness’ but an expression of their inner reality, fed by deeply rooted memories and needs. The common, well-meant mistake is to keep ‘bringing the person back to reality’ (e.g. ‘Your mother died a long time ago’, ‘You are here in the care home, not at home’). This is usually harmful: it unsettles and hurts (each time the person experiences the loss/the strangeness anew) and leads to resistance and suffering without improving anything (the person cannot retain the ‘reality’). The better way is validation (Module 3): accepting the person’s feelings and world of experience instead of correcting them.
This change of perspective requires empathy and imagination: putting yourself into the person’s confusing, often fear-laden world. Those who manage this meet the person with dementia with understanding rather than frustration, look for the need behind the behaviour and can convey security and a sense of safety. This understanding attitude is more effective than any ‘technique’: a person whose inner world is understood and respected feels safer and is less restless/anxious. For care, the change of perspective is therefore the most important basic competence in dementia care – the basis for communication, behaviour, relationship and dignity.
Change of perspective
| Instead of | Better |
|---|---|
| ‘Why is she behaving so senselessly?’ | ‘How is she experiencing this, what does she need?’ |
| ‘Bringing her back to reality’ | Accepting her world of experience (validation) |
| Behaviour as a ‘problem’ | Behaviour as communication |
Understanding ‘wanting to go home’
A common, often misunderstood phenomenon is the wish to go ‘home’ – even in people who have lived in the care home/in this place for a long time (or always). The reflex is often to correct (‘But you are at home’). Yet the ‘home’ the person is looking for is usually not a specific building but a feeling: the feeling of security, safety, familiarity and belonging – often linked to the home of their childhood or a time when the person felt safe and looked after. ‘I want to go home’ therefore often means: ‘I feel strange, insecure and lost here – I long for security and safety.’ Those who understand this do not respond with correction but with what the person actually needs: conveying security and a sense of safety (closeness, attention, reassurance, familiar things, ‘You are safe here, I am with you’), responding to the feelings (validation) and, if appropriate, talking about the ‘home’ of the past (this often awakens positive memories and has a calming effect). This approach – recognising and meeting the need behind the statement – is typical of understanding dementia care. It shows how the change of perspective and understanding the inner world lead to helpful, dignified care, whereas mere correction (‘You are at home here’) misses the need and increases suffering. The example of ‘wanting to go home’ is a model case showing that behaviour in dementia is communication – and that our task is to decode and respond to the message behind it.
This understanding attitude is the core of good dementia care: not correcting the facts, but understanding and responding to the feelings and needs.
Living in another time
Figure 2.2 pictures what many carers observe: as dementia advances, a person may feel that they are living in an earlier phase of life. Someone who worked as a nurse for thirty years may “start the shift”. A man who raised children may look for them. This does not mean that the person has lost their mind. The needs of that period, to be useful, to protect others, to be home on time, are still alive and still deserve respect.
The practical conclusion: ask about the earlier life and use it. A question such as “What was your work like?” opens a door and meets the need to feel useful. Module 5 shows how life-history work builds on this.
Needs behind behaviour
It helps to sort possible needs into groups. Physical needs: pain, hunger, thirst, toilet, tiredness, too hot or cold. Emotional needs: comfort, safety, love, belonging, a feeling of being useful. Needs of the senses: too much noise or too little stimulation, poor light, hearing aids or glasses missing. Social needs: company, a role, being listened to. Since people with dementia often cannot name these, you have to read them. Always check physical needs first, because they are quickest to solve and easiest to miss. This idea is developed further in Module 4.
A note of caution
Perspective-taking is a skill, not mind-reading. Your interpretation is a guess. Try it gently: offer a drink, a blanket or a quiet seat, watch the reaction and adjust. If the person becomes calmer, you were probably close. If not, think again. Different team members will read the same behaviour differently, and a short team conversation is often the best tool. Strong views also exist on how far one can ever understand another person’s inner world. A modest position is useful: we can never be sure, but we can ask and respond kindly.
In Germany: behaviour and inner life in the care law
German care law takes the inner world seriously in several places.
- Section 14 SGB XI (Social Code Book XI, the law on social long-term care insurance) lists behaviours and psychological problems as a separate area in which the need for support is assessed. It names, among others, night-time restlessness, fears, delusions and resistance to care (Bundesministerium der Justiz, n.d.-a). The law therefore treats these as part of the illness, not as bad will.
- Section 2 SGB XI says that wishes about how help is given should be met where appropriate (Bundesministerium der Justiz, n.d.-b). For people who can no longer state wishes, this means you look for them through observation, life story and relatives.
- The federal government’s Charta der Rechte hilfe- und pflegebedürftiger Menschen (Charter of rights of people in need of help and care) describes the rights of those who need help and care (Federal Ministry for Family Affairs, Senior Citizens, Women and Youth [BMFSFJ], n.d.). It is a useful reference when you explain to colleagues why dignity is more than politeness.