Course content – PFLEGE-16

Welcome to the course

Supporting people with dementia means understanding their world and preserving their dignity. This course teaches person-centred, dignified dementia care in 12 modules: from the fundamentals (forms, progression) through understanding the inner world , communication and validation , dealing with challenging behaviour and person-centred care (according to Kitwood) with life-history work, to shaping everyday life and the milieu , specific situations (exit-seeking, delusions), supporting relatives , law/ethics (avoiding freedom-restricting measures, FEM) and self-care . Each module offers learning objectives, a well-founded learning text, an in-depth section, a case study and a transfer-to-practice exercise.

Your learning path

Figure 0.1 shows all 12 modules in the recommended order.

How each module works

Each module has four pages in the book. Use the table of contents or the arrows at the bottom of each page.

This course provides professional orientation; it does not replace individual legal, medical or psychological advice. Legal status: October 2026.

An illness, not normal ageing

Dementia is an umbrella term for diseases of the brain that lead to a progressive decline in memory, thinking, orientation, language and everyday abilities. A clear distinction is important: dementia is not a normal part of ageing but an illness. Memory does naturally decline somewhat with age (you might forget a name now and then), but dementia goes far beyond this – it impairs the ability to cope with everyday life, and it progresses. The most common form is Alzheimer’s dementia; other forms include vascular dementia (caused by circulatory disorders), dementia with Lewy bodies, frontotemporal dementia and mixed forms.

Dementia is common and is becoming more common as society ages – many people in need of care are affected. For care, it is one of the most important topics of all. The core of this course is not just medical knowledge but above all an attitude: understanding people with dementia as valuable, feeling persons and supporting them with dignity.

Figure 1.1 shows how everyday forgetting differs from dementia. Read the left column as the normal range of ageing and the right column as typical warning signs. One sign alone proves nothing. What matters is the pattern, and whether it gets in the way of daily life.

Why “just age” is a risky thought

It is tempting to say “that is normal at his age”. The World Health Organization (WHO, 2026) stresses that dementia becomes more common with age but is not an unavoidable part of growing older. If everyone accepts the thought “just age”, a treatable cause may be missed. Low mood, an infection, a side effect of medicines or poor hearing can all look like dementia, and they need medical attention. Your role is not to diagnose. It is to notice, describe what you see in plain words and pass it on to the doctor and the team.

The same thought also causes harm in the other direction. If a person has been diagnosed, “just age” is no excuse for leaving them without support. Both mistakes have the same root: not looking closely at this one person.

Cause and syndrome: why the forms matter for you

You do not need to treat the forms of dementia like a medical student. You do need to know why they matter. Different causes bring different patterns. In Alzheimer’s dementia, memory problems usually come first. In vascular dementia, the course can be uneven, with sudden steps after small strokes. Dementia with Lewy bodies often brings strong day-to-day swings in alertness and sometimes vivid visions. In frontotemporal dementia, changes in personality or language may be the first signs. These are general professional descriptions, and every person is different.

For care, the practical lesson is simple: ask which abilities this person still has today, and which have changed. A person with changing alertness may manage a conversation at ten o’clock and be confused at four. Knowing this stops you from calling it “bad will”.

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.

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

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.

Reading an everyday scene and responding with dignity

This page turns the knowledge into a short routine. You will work through one scene step by step, then try a similar one yourself. A routine is useful because in a busy shift you rarely have time to think for long. A few steady questions are easier to remember than a long list.

Worked example: Mr Brandt in the corridor

Mr Brandt (fictitious), 78, stands in the corridor at 5 p.m. and says to you: “Where is my wife? She should be here by now.” His wife is not coming, since she is at home. This is the third time today. Step by step:

1. Notice the feeling. His hands are tight and he speaks quickly. He is worried, not “confused for fun”.
2. Think about the cause. It is late afternoon, the corridor is busy, and the meal trolley has just arrived. Evening is often a time of more unrest for people with dementia.
3. Do not argue the facts. Saying “You asked me that before” or “She is not coming” leads nowhere. He cannot keep the answer, but he will keep the feeling of being brushed off (see the in-depth box on emotional memory).
4. Respond to the feeling and offer closeness. Go to his eye level, say his name, walk beside him and say you can see he is worried.
5. Offer something to do. A cup of tea together, a look at a photo of his wife, a gentle walk to a quieter room.
6. Pass it on. If he is often distressed at this hour, tell the team and write down what you saw and what helped.

Small habits that make a difference

• Say who you are, every time. You cannot expect the person to remember you.
• Slow down before you touch. Tell the person what you will do, then wait a moment.
• Keep your face open. People with dementia read faces and tone more reliably than words.
• Write down what helped. A short note to the team turns one good moment into a method.

Two cases and what to take away

The world from the perspective of a person with dementia

The key to good dementia care is a change of perspective: understanding how the world is experienced by a person with dementia. Let us imagine: you can no longer remember what just happened or what is supposed to happen; you no longer recognise familiar places and people; you do not understand why strangers want to touch and wash you; you do not know where you are or what time/what year it is; you may be looking for your mother, who died long ago, or want to go ‘home’ (to a home from the past); you cannot express yourself. This world is often confusing, frightening and threatening. Much of what appears from the outside to be ‘senseless’ or ‘difficult’ behaviour makes perfect sense from the person’s inner perspective.

This change of perspective changes everything: instead of asking ‘Why is the person behaving in such a difficult/senseless way?’, you ask ‘How is the person experiencing this situation, and what need or distress lies behind their behaviour?’ This understanding attitude is the foundation of person-centred care (Module 5) and of responding to challenging behaviour (Module 4).

Why perspective matters more than technique

In a busy shift it is easy to see only tasks: the washing is due, the meal is ready, the person will not cooperate. Perspective-taking turns this around. It starts with a simple fact: a person with dementia lives in a world that is hard to read. Familiar faces look strange. Time jumps. Words do not come. In this situation, the person does what any of us would do: they try to make sense, find safety and get away from a threat. Many behaviours that tire staff are such attempts.

This view does not excuse every behaviour, and it does not mean that the person is always right. It means that you ask first what the behaviour is trying to say. Often this one question changes the next minute of care.

How dementia changes experience

Several changes combine, and not every person has all of them. Memory loss means that the person cannot hold on to what has just happened, so each moment can feel new and unexplained. Orientation loss means that time and place no longer fit; a corridor can look like a railway station. Language loss means that needs cannot be named, so pain or thirst may come out as shouting or refusal. Perception may change as well: shadows, mirrors or patterned floors can be misread. Finally, emotions become more open, because the control that usually dampens them is weaker.

Figure 2.1 shows the central idea of this module. Behaviour is the tip. Below it lie needs and feelings that the person often cannot put into words. The four examples are possibilities, never certainties. They are ways to start asking, not answers.

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.

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

Translating behaviour into needs

Figure 2.3 shows five steps you can use whenever a statement or behaviour puzzles you. This page walks through the steps with one example and then asks you to try them yourself.

Worked example: Mr Demir and the lorry

Mr Demir (fictitious), 86, drove lorries for forty years. Every morning at six he is dressed and waits at the front door. When staff say “You do not work any more”, he gets angry and shouts. Step by step:

1. Hear it. The words are “I have to go to work”. The feeling: pride and worry about not being late.
2. Wonder. The need could be to be useful, to keep a routine or to keep a role. It is probably not about the lorry itself.
3. Check. Is he in pain? Does he need the toilet? Is he cold at the door? The staff check and find nothing urgent.
4. Respond. A carer says, “You are an early starter, Mr Demir. Come and have a coffee first, then you can tell me about your routes.” He follows and talks happily.
5. Share. The carer notes that the morning is a good time for a task. The team agrees on an “early shift job”: checking the post and watering the plants.

Notice that nobody lied. The carer did not say that the lorry was waiting. She also did not argue the facts. She answered the need.

Phrases that open a door

• “That sounds important to you. Tell me more.”
• “You seem worried. I am here.”
• “What was that like for you?”
• “Shall we do it together?”

Two cases and what to take away

Communicating with appreciation

Communication with people with dementia requires adaptation – and it is the key to relationship and wellbeing. Basic rules: be calm and patient (give time!), approach and address the person from the front and at eye level (not from behind/by surprise – that startles them), maintain eye contact, address them by name, use simple, short sentences and clear questions (no long explanations, not several questions at once), speak slowly and clearly, support non-verbally (facial expression, gestures, touch, a friendly tone – people with dementia often understand the emotional level better than words!), and remain respectful and appreciative (no ‘baby talk’, no infantilising – the person is an adult). Very important: respond to the feelings instead of insisting on facts.

The central concept is validation (according to Naomi Feil): accepting with appreciation the feelings and the (experienced) reality of the person with dementia, instead of correcting or refuting them. To validate means ‘to declare valid’ – taking the person’s feelings seriously and giving them the feeling of being understood. This creates security and trust and reduces anxiety and restlessness.

Communication starts before the first word

The person with dementia notices you long before you speak. They see your pace, your face, the way you stand and whether you smile. If you arrive rushed, they feel rushed. For this reason, the first skill is not about language at all. It is about arriving calmly. Figure 3.1 shows a sequence you can use for every encounter, even short ones.

Each move has a reason. Coming from the front prevents a fright. Eye level takes away the feeling of being looked down on. Your name and a smile tell the person that you are friendly, since they may not remember you. Waiting acknowledges that the person needs more time to understand and answer. Many conflicts in care begin with a moment where a carer moved faster than the person could follow.

Words that work

Keep sentences short and put one idea in each. Prefer concrete words (“Please sit here”) to abstract ones (“Let us get ready”). Offer choices only when they are simple: “Tea or water?” is better than “What would you like to drink?”. Use the person’s name, but check how they like to be addressed; many older people prefer the formal form. Avoid “we” for “you” (“How are we today?”) and baby talk, because both signal that you do not see an adult. If the person does not understand, do not repeat the same words louder. Say it again more simply, or show it with a gesture.

Why validation works and where its limits lie

Validation in practice

In concrete terms, validation means: when a person says or experiences something that does not correspond to ‘reality’, you do not contradict but respond to the feeling behind it. Example: Mrs K. says, crying, ‘I have to go to my mother.’ Instead of ‘But your mother died long ago’ (cruel, hurtful, unsettling), you validate the feeling: ‘You miss your mother very much, don’t you? Tell me about her.’ You take the longing/grief seriously, talk about the mother (positive memories) and provide a sense of security. The person feels understood and calms down – instead of experiencing the loss anew each time. Validation does not mean lying (you do not claim that the mother is alive) but accepting the emotional level and responding to it without arguing on the level of facts. It is about appreciation, empathy and taking the inner reality seriously.

Equally important is non-verbal communication: people with dementia increasingly lose their understanding of language, but they ‘read’ the emotional level very precisely – tone of voice, facial expression, posture, touch, the atmosphere. A calm, friendly, attentive manner has a calming effect even if the words are not understood; haste, tension or anger are sensed and increase restlessness/anxiety. That is why your own inner calm and appreciative attitude are so important. For care: communication with people with dementia is less a question of words than of attitude, the emotional level and the relationship. Those who communicate calmly, patiently, appreciatively and in a validating way and respond to feelings reach the person – and create security, trust and wellbeing. This communication competence is one of the most important in dementia care.

Four answers compared

Figure 3.2 compares four common answers to a statement such as “I have to go to my mother”. Correcting is the reflex of many helpers and, as the in-depth box above explains, usually brings pain without gain. Going along with the statement (“She is on her way”) may calm the moment, but it relies on a false statement. Many professionals are uneasy about this, because trust can break if the person senses that they are not told the truth. Distracting can be a kind way to move on, yet when used alone it leaves the feeling untouched, and it may return. Validating answers the feeling without claiming anything false and without arguing. This is why most professional guidance, as general practice, favours validation first, and distraction or redirection afterwards where useful.

Note that the table is a summary of general practice experience, not a measured result. Research on communication approaches in dementia care is varied, and in practice, carers combine methods according to the person and the moment. Think of validation as a stance that makes every method kinder.

The idea behind validation

Validation, as described by Naomi Feil, rests on a simple belief: behind every statement is a feeling, and every feeling has a right to be heard. It was developed for very old people with advanced disorientation. Today the term is used more widely, for an accepting, curious and warm stance. Figure 3.3 breaks this stance into six small steps. They are not a script. You will find your own words. What matters is that you slow down, hear the feeling and name it without judging.

Validation has limits. It does not replace medical care: pain, infection or fear caused by a hallucination need a nurse or doctor. It is not a way to avoid information the person needs for safety: if someone is about to leave the building in a cold night, you must act, calmly and with care. And it is not for you to use as a technique to manage people. If you do not mean it, the person will notice, since they read your tone more reliably than your words.

In Germany: truth, will and the law

There is also a moral debate about how far “therapeutic untruths” are acceptable. Some see them as a kind help, others as a breach of respect. The approach in this course is cautious: avoid lying where you can, and answer the feeling.

Validating in everyday situations

This page shows validation at work in a typical scene, step by step, and gives you phrases to adapt. Use them as a starting point and put them in your own words. Rigid phrases sound false, and people with dementia pick up false notes quickly.

Worked example: Mr Hoffmann and the school run

Return to Mr Hoffmann from the beginning of this module. He says: “Where is my wife? We have to pick up the little ones from school.” Walk through the six steps from Figure 3.3:

1. Centre yourself. You breathe out, relax your shoulders and walk up from the front.
2. Listen to the feeling. Behind the words: worry and a sense of duty as a father.
3. Name it. “You are worried about the children, Mr Hoffmann. You are a caring father.”
4. Ask gently. “Tell me about them. What are their names?”
5. Stay close. You sit beside him and listen to the stories, nodding.
6. Close warmly. “Thank you for telling me. Shall we have a coffee together?”

Compare this with the correcting answer, “Your children are grown up”. Mr Hoffmann would have to meet the surprise of time passing again, and the worry would stay. With validation, the worry is heard, and the conversation may even bring a smile.

When words do not reach

In later stages, speech may be very limited. Then your hands, voice and presence do the work. Use slow, warm touch only if the person welcomes it, watch for signs such as stiffening or turning away, and respect them at once. Humming, a familiar song, a soft towel or a hand on the back can reach where words cannot. Keep the surroundings calm: switch off the television while you talk.

Two cases and what to take away

Behaviour is communication

‘Challenging behaviour’ (formerly ‘behavioural problems’) – restlessness, aggression, screaming, running away, resistance, calling out, night-time restlessness – is one of the greatest challenges in dementia care. The decisive change of perspective: this behaviour is not malice and not meaningless but a form of communication – the expression of an unmet need or of distress that the person cannot communicate in any other way. Because people with dementia can no longer put their needs and their suffering into words, they ‘show’ them through behaviour. The task of care is to decode the message behind the behaviour and to meet the underlying need – instead of merely ‘fighting’ the behaviour or ‘sedating’ it with medication.

Possible causes/needs behind challenging behaviour: physical distress (pain! – Course 14, hunger, thirst, urge to urinate, constipation, tiredness, illness/infection, side effects of medication), psychological distress (anxiety, loneliness, boredom, being overwhelmed, grief, loss of control), the environment (too many stimuli, noise, haste, unfamiliarity, darkness), or communication/relationship problems (misunderstanding, disrespectful treatment, being addressed from behind).

Looking for the cause instead of sedating

The most important principle: look for the cause/need instead of sedating prematurely. The common, problematic reflex in response to challenging behaviour is to give sedatives (sedation). This may ‘calm the person down’ in the short term, but it does not solve the problem (the need/distress remains unmet) and carries considerable risks: falls, further decline, confusion, loss of quality of life – and the person continues to suffer (merely ‘sedated’). In addition, many of these medicines are risky in old age (PRISCUS 2.0 list, Course 11). The better, professionally required approach is searching for the cause: why is the person behaving like this? When/during what does the behaviour occur (during personal care? in the evening? in noise?)? A particularly important, often overlooked point: pain is a very common, unrecognised cause of challenging behaviour in dementia (Course 14, Module 3) – always think of pain in cases of restlessness/aggression and, if appropriate, arrange a treatment trial. A urinary tract infection, constipation, hunger, thirst, boredom, anxiety or being overwhelmed may also lie behind it.

Once you have identified the cause, you can meet the need: treat pain, accompany the person to the toilet, give them something to eat/drink, offer occupation/exercise, relieve anxiety (validation, closeness, security), reduce overload (fewer stimuli) or adapt the environment. The ‘challenging behaviour’ often disappears when the underlying need is met. For care, this is the central competence: reading behaviour as a message, looking for the cause, meeting the need – instead of sedating. This requires observation, patience, creativity and knowledge of the person (life history, Module 5), but it is far more effective and more dignified than sedation. Medication (as prescribed by a doctor) may be necessary as a supplement in certain situations, but never as the first or only ‘solution’ instead of searching for the cause. This approach – understanding instead of sedating – is the heart of a dignified response to challenging behaviour.

The iceberg: what you see and what lies beneath

The word “challenging” is worth a second look. It describes how the behaviour feels to the people around the person: it challenges the team, the relatives and the routine. It says nothing about the person’s own experience. For the person, the behaviour is usually an attempt to cope, to protect themselves or to be heard. Figure 4.1 uses the picture of an iceberg. Above the water line is the small part you can see and hear. Below it lies the much larger part that explains it.

Figure 4.1 also warns you about a trap. If you work only on the tip, for example by telling Mrs Weber to calm down, the cause beneath stays where it is. The behaviour then returns, or it changes into something quieter, such as withdrawal. Withdrawal looks “easier” for the team, but the person may suffer just as much. So a quiet resident is not automatically a content resident.

Two more points belong to the foundations. First, behaviour that is new or suddenly much worse is a signal. A new infection or an acute confusional state (a sudden, often short-lived change in alertness and thinking, called delirium) can be the reason, and both need a doctor quickly. Second, safety always comes first: if a person is in danger or endangers others, you protect everyone calmly and call for help. The search for the cause follows straight after the situation is safe.

Reading causes, and why sedation is not a first answer

Why the body comes first

The table above lists four areas, but in practice you start with the body. There are two reasons. A physical cause can often be treated quickly, and a missed physical cause can do real harm. A person with advanced dementia may no longer be able to say “my tooth hurts” or “I need the toilet”. The need is still there. It simply shows itself as restlessness, calling out or resistance.

As general professional knowledge, a useful body check covers the following points. Is the person in pain, for example when moving, sitting or being touched? When did they last drink, eat and use the toilet? Is the bladder full, or is there constipation? Are there signs of infection, such as fever, a new smell of urine or a cough? Are the teeth, the mouth or the skin sore? Is the person too hot or too cold? Can they see and hear well, and are glasses and hearing aids in place and working? Did a new medicine start recently, or did a dose change? Nurses and doctors decide on any medical steps. Your role is to notice, to record and to report.

Pain deserves special attention because people with dementia often cannot report it in words. Look at the face (frowning, grimacing), at the voice (moaning, calling), at the body (guarding a limb, stiffness, rubbing a place) and at changes in habits (not eating, sleeping badly, refusing to walk). The module on pain management in this course series covers pain scales in detail, so here the main message is: when behaviour changes, think of pain early.

A stepwise path before any sedative

Figure 4.2 puts the principle of this module into a sequence. It does not replace professional judgement or the instructions of the doctor in charge. It shows the order in which a team can think. Each step is small, and several steps can be done in one shift.

Notice that step 6 does not say “never medication”. The original text of this module already makes this clear: medication may be needed as a supplement in certain situations, but not as the first or only answer. A person in severe distress, or in danger, has a right to relief. What matters is the order, and that the decision is taken by a doctor after the causes have been looked for.

What international guidance says

The World Health Organization (WHO) has a public fact sheet on dementia that is updated regularly. It states that when a person with dementia may harm themselves or others, non-drug approaches should be tried first. It adds that antipsychotic medicines, such as haloperidol or risperidone, may be considered only when clearly needed, with caution and close supervision (World Health Organization, 2026). The same fact sheet notes that physical and chemical restraints are widely used in care homes and hospitals, even where regulations aim to protect freedom and choice, and it calls for legislation based on human rights standards.

In Germany, professional guidelines for dementia, published by medical societies, follow the same direction: non-drug measures come first, and the use of antipsychotic medicines is limited. This course does not quote their wording, because the text of the current guideline could not be verified for this module. Treat this sentence as general professional knowledge, and ask your organisation which guideline or internal procedure applies in your setting.

In Germany: sedation can also be a legal question

Finally, a note on the person’s view. Pain, fear and boredom are not abstract. A person who is sedated instead of helped may still be in pain, only less able to show it. Understanding instead of sedating is therefore not only more effective. It respects the person’s dignity and their right to be taken seriously.

Detective work in practice

This page shows the search for a cause at work, step by step. It also gives you a simple observation form and phrases to adapt. Use them as a starting point. Every person and every team is different, and a form helps only if it is used and read.

Worked example: Mrs Weber and the morning wash

Return to Mrs Weber from the beginning of this module. The team says she is “aggressive in the mornings”. Instead of a label, a carer, Nadia (fictitious), decides to look closely for one week. Figure 4.3 shows what she writes down. The form uses four questions from the detective principle: when and where, what came before, what the behaviour was, and what helped.

Read the table as Nadia would. The pattern points to three possible causes: pain in the shoulder, a cold room and the way she is approached. Notice what Nadia does not do. She does not decide that she has found the one true cause. She writes “possible” and chooses small changes that cost little and carry no risk.

1. Record. Write down what you see, not what you think. “Pushes hand away” is an observation. “Is aggressive” is a judgement.
2. Look for the pattern. After a week: always the same time, the same place, the same movement or the same person?
3. Make a list of possible causes. Here: pain, cold, being startled.
4. Report. The suspected pain goes to the nurse in charge, who decides how the doctor is informed. You do not decide on medicine.
5. Change one thing at a time. Warm the room, greet from the front, work slowly, give a warm towel. Changing everything at once makes it unclear what worked.
6. Check and share. After a few days, was there a change? Write it into the care plan so the next shift knows.

In this example the mornings became calmer after a few days, and the doctor was asked to look at the shoulder. This is a typical story, but it is not a promise. Sometimes nothing changes, and the search continues with the next possible cause. That is part of the work and not a failure.

Two cases and what to take away

The person at the centre

Person-centred care (shaped decisively by Tom Kitwood) is the core of modern dementia care. Its basic idea: the person with dementia is and remains a person with dignity, individuality, a life history and needs – they are not to be reduced to their illness or their ‘deficits’. Kitwood coined the term ‘personhood’: the recognition of the human being as a valuable, unique individual who exists in relationship with others. This personhood must be actively maintained and strengthened – through the way we treat the person. At the centre are the psychological needs that Kitwood described: love (at the centre), comfort, attachment/security, occupation/inclusion, identity and belonging. When these needs are met, the person does well; when they are disregarded, the person suffers.

Kitwood also described how personhood can be undermined (through ‘malignant social psychology’ – e.g. infantilisation, ignoring, mockery/accusation, objectification, treachery, outpacing) and how it is strengthened (through appreciation, recognition, enabling, celebration, inclusion). For care, person-centred care means: seeing and treating the person with dementia in their individuality and dignity, meeting their psychological needs and supporting them as a person – not as a ‘case’ or a ‘task’.

Life-history work – knowing the person

A central tool of person-centred care is life-history work (biography work): knowledge of the person’s life course, personality, preferences, habits, values, occupations, hobbies, important relationships and formative experiences. Why is this so important? Because people with dementia increasingly live in their past (Module 2) and because their life history helps you to understand the person, to interpret their behaviour, to recognise their needs and to offer them familiar and meaningful things. Examples: if you know their occupational history (e.g. ‘was a farmer’), you may understand why someone wants to get up early and go ‘to work’, and you can offer meaningful occupation (e.g. gardening). If you know their preferences (favourite music, favourite food, customary rituals), you can bring joy and familiarity. If you know formative experiences (e.g. wartime experiences), you understand certain fears and can avoid them/take them into account. If you know their relationships, you understand the longing for particular people. The life history – usually obtained from relatives and documented – is thus a treasure for individual, person-centred support.

Person-centred care therefore means seeing and supporting every person with dementia in their uniqueness – not ‘people with dementia’ as a group, but this particular person with their history, their preferences and their needs. This requires interest in the person, life-history work and a willingness to tailor care individually. The reward is great: a person who is seen as a person, understood through their life history and whose needs are met experiences more dignity, wellbeing, security and contentment – and shows less challenging behaviour. Person-centred care is thus not only an ethical attitude but also professionally effective. It is the foundation of all dementia care and links all the other modules (communication, behaviour, everyday life, environment) into a coherent whole: doing justice to the person with dementia as a person.

The needs at the heart of the approach

Figure 5.1 shows the psychological needs in the shape of a flower, with love in the middle. The picture helps you remember an important idea: the needs are connected. A person who is held (comfort) feels safer (attachment), dares to join in (inclusion), has something to do (occupation) and remains someone (identity). If one petal is missing, the others suffer too. Many writers describe Kitwood’s list with these five petals around love. The course text above adds belonging, which is closely related to inclusion, and the table on the next page lists the needs in the same grouped way.

Figure 5.1 is a reflection tool and not a checklist. Ask yourself of a particular person: which petal is strong today and which is weak? A resident who sits alone in a corner may be missing inclusion. One who wanders and pulls at doors may be missing attachment or occupation. The answer often points to a very small, practical step: a hand on the shoulder, a seat at the table, a task that matters.

Strengthening personhood and using life history with care

Turning the list into daily practice

A list of eight harmful and seven helpful behaviours is hard to remember in a busy shift. Figure 5.2 therefore pairs each harmful habit with a helpful alternative that you can try at once. The pairs are a teaching aid. They are not a scoring system, and they are not a way to blame colleagues. Kitwood himself stressed that the harmful behaviours are usually not meant badly. They grow from time pressure, habit and fear of doing something wrong.

Look at the example from the start of this module. “Time for our dinner, dear. Let us be a good boy” infantilises Mr Okafor and treats him as a task. A strengthening alternative would be: “Good evening, Mr Okafor. Dinner is ready. You drove buses for many years, did you not? Would you like to sit by the window?” This sentence recognises him, includes a piece of his life and offers a choice. It takes about as long as the first one.

Life-history work: what belongs in it, and what does not

The original text describes life-history work as a treasure. Like every treasure, it needs careful handling. A good life-history sheet is short, practical and alive. It records things that help you to offer familiar, meaningful experiences. Typical sections are: what the person likes to be called; family and important people; home and places; work and role; hobbies and interests; favourite music, food and drink; daily habits (when they wake, how they like their tea); things that calm them; things that frighten or upset them; and what is important to them in their beliefs and customs.

Not everything in a life belongs in a care file. Painful experiences, such as war, flight, violence or loss, may be part of the story. Where they matter, they help you to understand a fear and to avoid triggers. They should be recorded with care, only as far as they help the person, and in neutral words. Some people also have things they never wished to share. Not knowing a part of a person’s life is not a failure, and the sheet is never complete.

There is a second reason for care: the person is more than the sheet. A life history is a starting point for a conversation and not a script. People change, and a person who loved gardening at sixty may not want to garden at eighty-five. Check the offer against the reaction you see today. Does the person smile, join in and relax, or look away? Your observation counts more than the record.

In Germany: dignity, wishes and personal data

The practical message is simple. Collect only what helps, say why you ask, and keep it where only the people who need it can read it. Photographs, letters and objects that relatives bring can be even more helpful than a form, provided they are handled respectfully and returned.

From life story to a personal offer

This page shows how a few facts about a life become a concrete, respectful offer. Work through the example, use the phrases as a starting point and put them in your own words. Rigid scripts sound false, and people with dementia notice quickly.

Worked example: Mr Okafor and the bus

Return to Mr Okafor from the beginning of this module. He has moved into the home three weeks ago. He eats little, sits at the window and sometimes stands up at half past five in the morning, saying that he must “start the early shift”. A carer, Sofia (fictitious), speaks to his daughter, with Mr Okafor’s agreement, and fills in a short life-history sheet. Figure 5.3 shows the route from the sheet to the offer.

Look at what the sheet changes. Without it, Mr Okafor’s early rising looks like restlessness or confusion, and the team might ask whether he needs something to calm him (compare Module 4). With it, the behaviour makes sense: his body clock and his sense of duty still belong to a bus driver. Sofia suggests a calm morning routine. At six o’clock, a carer greets him by name, brings a coffee and asks him to check the timetable and “the day’s route” on a large sheet. After a few mornings he stays in his room until then and eats breakfast with more appetite. He still has bad mornings, and the team keeps an eye out for pain, loneliness and other causes. The offer does not cure anything. It gives him a role.

Two cases and what to take away

Security through structure and meaningful activity

Good organisation of everyday life is central to the wellbeing of people with dementia. Two elements are particularly important: a reliable daily structure and meaningful activity/occupation. The daily structure (familiar, regular routines and rituals – fixed times for meals, activities, rest) provides security and orientation: in a world that dementia has made confusing and unpredictable, recurring, familiar routines provide stability and reduce anxiety and restlessness. Rituals (e.g. a particular morning routine, a song before meals, a good-night ritual) have a calming and orienting effect.

Meaningful activity and occupation meet the basic need for occupation/inclusion (Kitwood, Module 5) and give the day meaning and joy. People with dementia – like all people – need activity, participation and the feeling of being needed and being able to do something. Inactivity, on the other hand, leads to boredom, withdrawal, restlessness and decline. Activities are designed to be individual (adapted to life history, preferences and abilities – Module 5), resource-oriented (what the person can still do, not what they can no longer do) and free of overload/pressure to perform.

Activities that do people good

Meaningful activities for people with dementia are based on their abilities, preferences and life history (Module 5). Examples: familiar everyday tasks (folding laundry, helping to lay the table/cook, gardening, sweeping – they give the feeling of being needed and competent), exercise (walks, seated dance, gymnastics – important for body and mind, cf. Course 08), music (singing, listening to music – often reaches people with dementia deeply, awakens memories and feelings, has a calming/activating effect), sensory stimulation (basic sensory stimulation, multisensory rooms, tactile/olfactory stimuli), reminiscence work (old photos, objects, songs, stories – activate the preserved long-term memory and provide joy/identity), creative activities (painting, handicrafts), animals (animal visits/animal-assisted therapy), and simple sociability (being together, conversations). It is important that the activities are enjoyable and successful (no pressure to perform, no overload – the person should feel competent and comfortable, not overwhelmed/exposed).

For care it is important to understand: activity and occupation are not a ‘luxury’ or a ‘nice extra’ but a basic need and a central part of dementia care. Inactivity and boredom are common (overlooked) causes of restlessness and challenging behaviour (Module 4). Good organisation of everyday life with structure, rituals and meaningful, enjoyable activity promotes wellbeing, independence and contentment and reduces restlessness – it is therefore also ‘therapy’. Care staff shape everyday life consciously (in cooperation with care assistants (Betreuungskräfte)/social care support, occupational therapy and relatives), individually and with dignity. Small moments count too: a song sung together, a walk, folding laundry, a conversation about the old days – all of this gives the day meaning and joy and strengthens personhood. The organisation of everyday life is therefore an essential, often underestimated contribution to the quality of life of people with dementia.

A day with anchor points

“Daily structure” does not mean a rigid timetable. It means a small number of reliable anchor points that return every day in the same order, with flexible time in between. Mealtimes, getting up, a walk, a rest and an evening ritual are typical anchors. The person may not remember the clock, but the body and the senses learn the rhythm: the smell of coffee, the same song, the same carer’s greeting. Figure 6.1 shows a sample day for one person. It is a model to adapt and not a prescription. Someone who always rose at five or liked a long evening will need a different curve.

Notice what makes an anchor effective. It is repeated, and it is sensory and personal. A good-night ritual may be a warm drink, a lamp on a low setting, a familiar song and the same words every night. It matters more that the sequence is the same than that it is long. Rituals also protect carers: when the day follows a rhythm, there is less to negotiate, and fewer moments of conflict.

Finding the right level, and who provides what

The right level of challenge

The original text asks for activities that are enjoyable and successful, without pressure and without overload. In practice the hardest part is finding the right level. An activity that is too easy feels childish and leads to boredom. One that is too hard leads to frustration, shame or anger. Figure 6.2 shows three zones. They are a thinking aid based on general professional experience, and they are not measured values.

Two practical rules follow from Figure 6.2. First, always leave a way out. If the person walks away, that is a clear answer, and you respect it. Second, make the task look like what it is. A folded towel that is later used, a laid table that is really eaten from or a seedling that is really planted gives a sense of purpose. Tasks that look like “busywork” are noticed, even in advanced dementia.

Choice, privacy and the limits of “activation”

Activity is not a duty. Some people have always preferred their own company, a book or a window. A person who does not join the singing may still be content, and forcing participation can become another form of pressure. Offer, invite, repeat, and accept a refusal on the day. Ask whether the person is bored, lonely or simply calm. These need different responses. Also pay attention to how activities are presented. Words such as “group”, “therapy” and “programme” can put people off, while “come and help me” is often welcomed.

The evidence for single interventions is varied. Music, exercise and reminiscence are widely used and valued, and the original text rightly stresses the effect of music on wellbeing. At the same time, responses differ strongly between people, and no activity works for everyone. This course therefore treats these approaches as good general practice and as invitations to try, observe and adapt, and not as guaranteed treatments. For stage-specific details of cognition and speech, see Modules 1 and 2.

In Germany: who is responsible for activities?

Planning a day and an activity

This page shows how to plan one small activity and one anchor point for a real person. Use the steps and phrases as a starting point and adapt them. The best plan is the one that fits the person today, and that you can keep up in a busy shift.

Worked example: Mrs Novak and the afternoon walk

Return to Mrs Novak from the beginning of this module. In the afternoon she walks up and down the corridor and calls for her sister. Her son tells the team that she was a seamstress and that her sister used to visit on Sunday afternoons to sew and drink coffee together. The team decides to plan one activity for the afternoon. Figure 6.3 shows the six steps they follow.

1. Choose. The activity comes from her life story (sewing, a Sunday-afternoon ritual) and from what she can do today: sorting and holding, not threading needles.
2. Prepare. A basket of buttons, fabric scraps and ribbons, a quiet corner with good light and a cup of coffee at 3 p.m.
3. Invite. “Mrs Novak, could you help me? I have a basket of buttons that need sorting, and you know about these things.”
4. Do together. Sit beside her. Say little. If she holds up a button, comment on its colour. Watch for the signs in Figure 6.2.
5. End warmly. Stop when she tires: “Thank you, that was a great help.” Leave the basket where she can find it.
6. Note and share. Write what she did, how long, and whether she calmed down. Share it at handover, so the next shift can offer the basket again.

Over the following days the team makes the Sunday-afternoon coffee a fixed anchor point (Figure 6.1) and puts on a song she knows. She still walks and calls out sometimes, and the team keeps checking for pain, thirst and the toilet (Module 4). But the afternoons have a rhythm and a purpose they lacked before. The change was small and cost almost nothing.

Two cases and what to take away

The environment as ‘therapy’

The environment (the milieu) has a major influence on the wellbeing and behaviour of people living with dementia – this is referred to as milieu therapy/milieu design. Because people with dementia find it harder to understand and process their surroundings and are easily over- or under-stimulated, a dementia-friendly design is important. Aims: promote orientation, provide safety, design stimuli appropriately (neither overwhelming nor impoverished), create familiarity and homeliness, and enable movement. A good environment has a calming and orienting effect; a poor one (overstimulating, bare and clinical, confusing, unsafe) fosters anxiety, restlessness and disorientation.

Elements of dementia-friendly design: good lighting (bright, glare-free, avoiding shadows – shadows can trigger fear/misperceptions; orientation lighting at night), contrasts (e.g. high contrast between plate and food – Course 07; a coloured toilet seat so that it can be recognised), clear orientation aids (signage with pictures/symbols, names/photos on room doors), familiarity (personal/familiar objects, homely rather than clinical design), low-stimulus retreat spaces and stimulating areas (balanced), safe walking routes (circular routes, clear and safe corridors – enabling movement without dead ends/barriers), and the avoidance of hazards and overstimulation (noise, hectic bustle).

Designing for orientation and safety

Orientation can be supported by the environment: clear, highly visible signage (with symbols/pictures, not just text – e.g. a toilet pictogram), personal labelling of rooms (name, a photo of the person when younger, familiar objects on/in front of the door), seasonal/time orientation (calendars, seasonal decorations, daylight), and a clear, recognisable layout. Safety takes into account: avoiding fall hazards and barriers (Courses 08/18), securing dangerous areas/substances, but – very importantly – without restricting the person unnecessarily (no ‘locking in’; creating safe opportunities for movement instead of preventing movement). Circular walking routes (indoors/in the garden) are a fine concept that gives the urge to move (including exit-seeking, Module 8) a safe space – the person can walk without ending up in dead ends/at locked doors (which triggers frustration/restlessness). Managing stimuli is also important: too many stimuli (noise, commotion, garish patterns, a television left running) overwhelm and unsettle; too few (a bare, low-stimulus environment) lead to under-stimulation and withdrawal. The right balance – stimulating but not overwhelming – promotes wellbeing.

For care staff it is important to understand that the environment is a powerful, often underestimated factor: many behaviours and states (restlessness, anxiety, disorientation, risk of falling) are partly influenced by the environment. Care staff can contribute a great deal through attentive observation (What in the environment unsettles/calms the person?) and by suggesting design changes (to management/the team). A lot can be done on a small scale, too: ensuring good lighting, reducing noise, allowing familiar objects, labelling the room door, creating opportunities for retreat and movement. Milieu design links with mobility (Course 08, a movement-friendly environment), fall prevention (Course 18) and nutrition (Course 07, contrasts) – an expression of holistic dementia care. A dementia-friendly environment is ‘therapy’ in action: it works around the clock, entirely without medication, and promotes orientation, safety, movement and wellbeing.

Person and environment: a two-way fit

It helps to think of behaviour as the result of two things: what the person can still do and understand, and what the surroundings ask of them. When abilities shrink, the same room that once felt easy can become too demanding. The environment is then no longer neutral. It either carries the person or works against them.

Perception is the most practical starting point. Brain changes in dementia can affect how contrast, depth, brightness and reflections are processed, often on top of the ordinary changes of the ageing eye. The result is that people may misread what is in front of them without being confused about everyday things in general. Figure 7.1 lists five common traps. Each row has the same pattern: what staff see, what the person may see, and a simple response.

Use Figure 7.1 as a checklist for a walk-through. Two points deserve emphasis. First, the person’s reaction is the best evidence: stopping, stepping over a line, avoiding a spot or startling at a mirror all tell you where a trap lies. Second, you do not need a building project. A mat that is removed, a lamp that is moved, or a mirror that is covered can solve a problem in minutes.

Light, sound, safety and homeliness

Light: the cheapest intervention

Light affects how well a person sees and also how well they sleep. Daylight during the day helps the body clock, and a room that is dim at noon but bright at midnight can add to day–night confusion (Module 8). Aim for even, glare-free brightness in the places where people walk, eat and wash, and use windows and the garden as often as the person can manage. At night, a low, warm orientation light on the way to the toilet is safer than a bright ceiling light, which wakes people fully and throws hard shadows. Curtains or blinds can reduce reflections from low evening sun, which is also when some people become more restless (“sundowning”, Module 8).

Sound and the feeling of the room

Noise is easy to overlook because staff get used to it. A television in the background, call bells, trolleys and several conversations at once can add up to more than a person with dementia can sort out. Ask in each room: is anyone actually watching the television? Can a quiet corner be created? Is there a place where a person can hear a familiar voice or a song without competing sounds? Soft materials, closed doors and a calm voice reduce noise at little cost. Figure 7.2 shows how too little and too much stimulation each show up in behaviour.

Read Figure 7.2 from the middle outwards. In the balanced column, the person chooses how much to join. In the other columns, the behaviour itself is the message, and the useful response is to adjust the environment before reaching for any other explanation (Module 4).

Safety without locking in

Safety measures and freedom of movement often seem to pull in opposite directions. The original text states the principle: secure what is dangerous, but do not restrict the person unnecessarily. In design terms this means that you secure the hazard, not the person. Examples are covering hot pipes, storing cleaning substances out of reach, removing loose cables and rugs, choosing non-slip but matt floors and fitting handrails with good contrast. Where a door must remain closed for reasons of safety, ask whether a visual solution, such as a door that looks like a wall or a bookcase, is possible, and discuss it in the team. Some solutions raise ethical and legal questions of their own, because they can mislead the person. Disguising a door is a measure that needs to be discussed, not simply installed (Module 11). The legal framework for deprivation of liberty is explained in the box at the end of this page.

Homeliness against the institution

Many care settings look like hospitals: long corridors, uniform doors, bright lights and no personal signs. A homely space is smaller, more varied and more personal. Familiar furniture, a favourite chair, photographs and everyday objects allow people to recognise “my place”. It is a mistake to equate homely with cluttered: familiar objects should be selected, within reach and not hidden among too many others.

Who decides what in your setting?

Walking through a space with dementia eyes

This page shows how to examine a space in four steps and how to plan a route that supports movement. Adapt the steps and phrases to your setting. A good change is small, tested and shared.

Worked example: Mr Costa and the corridor

Return to Mr Costa from the beginning of this module. The team decides to do a walk-through of the corridor, once in the afternoon and once in the evening, and to look at it from his eye level. They follow the four steps below and record what they find.

1. Watch first. Mr Costa stops each evening at the same spot, where a dark mat meets the corridor floor. He does not stop at lunchtime. A carer notices that the evening light from the window makes the floor shine.
2. Look through his eyes. The team stands where he stands. The dark mat can look like a hole, the shiny floor like water, and the mirror at the end shows a figure that moves towards him.
3. Change one thing at a time. On the first day they remove the mat. On the third day they cover the mirror with a picture. On the fifth day they fit a blind. Each change is noted so that the team learns what helped.
4. Check and share. After a week Mr Costa walks through the corridor in the evening with a cheerful remark about the picture. The team writes the changes in the care plan and tells the next shift.

Notice the order: watch, look, change one thing, check. Changing everything at once makes it impossible to learn what works, and it can confuse the person if familiar things disappear overnight.

A route that invites walking

Figure 7.3 shows a ring-shaped route with four places to pause: a seat with a view, a memory shelf, a garden door that is open by day and a quiet alcove. The plan follows the idea in the original text of circular routes without dead ends. It is a layout idea and not a standard. What matters is that the person can walk, stop, look and return without meeting a locked door or a blank wall.

Look at how the four places work together. The seat offers a rest before the person gets tired. The memory shelf offers something to touch and talk about. The garden door gives access to daylight and fresh air. The alcove offers a retreat when the route becomes too busy. When the person is walking to find something, you can accompany them for a stretch, and then offer a seat and a drink.

Two cases and what to take away

Managing difficult situations

Certain situations are particularly challenging in dementia care. With a exit-seeking/walking with purpose (Weglauf-/Hinlauftendenz: the urge to leave/walk about), there is usually a need behind it (urge to move, searching for something/someone, wanting to go ‘to work’/‘home’ – Module 2, anxiety, restlessness): you understand the need, enable safe movement (circular routes, accompanied walks, movement activities), design the environment (Module 7), and avoid locking in/physical restraint (Module 11). With aggression (Module 4): look for the cause/need (pain!, anxiety, being overwhelmed), respond calmly and in a de-escalating way (do not confront, Course 23), provide safety, protect yourself and others. With delusions/hallucinations (the person sees/hears/believes things that are not real, e.g. ‘being robbed’, strangers in the room): do not argue/contradict (for the person it is real!), take the feelings seriously (fear, mistrust), provide safety, distract, and check for triggers (e.g. mirrors, shadows, misperception – Module 7; or a physical cause/delirium).

Other situations: night-time restlessness/disrupted day–night rhythm (daily structure, activity during the day, calm/safety at night, checking causes), ‘sundowning’ (restlessness in the evening – adapt the environment, calming rituals), resistance to care (Course 06 – familiarity, calm, no coercion, understanding the cause), eating problems (Course 07). The common denominator: understand the cause/need, respond calmly and empathetically, provide safety, no force/physical restraint.

Responding to delusions and mistrust

A common, distressing phenomenon is delusion – especially the delusion of theft (‘Someone has stolen/taken something from me’) or mistrust of people. For the person this belief is real and frightening – often it is an expression of loss of control (the person cannot remember where they put something and ‘explains’ its disappearance as theft) and of insecurity. The wrong approach is arguing/contradicting (‘Nobody has stolen anything from you, you have mislaid it’) – this reinforces mistrust and conflict and hurts. The right approach: take the feelings seriously and validate them (acknowledge the fear/mistrust/loss: ‘It’s annoying/worrying that you can’t find it’), provide safety and relationship (build trust), help search together (instead of contradicting, support the ‘search’ for the missing item – often the item turns up, or the person is distracted/calmed), distract and reduce triggers. It is also important to consider possible physical causes: new or increased hallucinations/delusions can also be signs of delirium (acute confusion due to infection, dehydration, medication – Course 10) and must then be investigated (do not simply accept them as ‘dementia’!). For care staff it is important to respond calmly, patiently, non-confrontationally and empathetically, to take the feelings seriously, to provide safety, and, with newly occurring/increased symptoms, to think of delirium and have it investigated by a doctor. Dealing with delusions/mistrust requires a particular amount of patience and the ability not to take it personally (the mistrust is not really directed at the carer but is an expression of the illness/insecurity).

These situations exemplify the principles of dementia care: understanding (inner world, need), validating (accepting feelings), providing safety, not confronting, considering causes (including physical ones). Those who master these principles can handle even difficult situations with dignity and effectiveness.

One frame for many situations

The situations in this module look very different, but the same four questions help in each of them. What is the person trying to do or say? What might be behind it: a need, a fear, a pain, a habit from earlier life? What is happening around the person, in the room, the time of day and the people present? And is this new, or has it been there for a while? These four questions turn a behaviour that feels like an attack into information. They also protect staff, because a carer who is looking for the meaning is less likely to take the behaviour personally.

The last question matters most. A change that comes on over hours or days is handled differently from one that has built up over months. Figure 8.1 shows the fork. It does not diagnose anything. It tells you where to look first and who to tell.

Read Figure 8.1 from the top. If the change is sudden, the left-hand path applies, and the next step is to report it rather than to manage it alone. If it is slow, the right-hand path leads back to the approach of Modules 4 and 7. If you are unsure which path applies, treat it as the left one and ask. A report that turns out to be unnecessary costs little, and a missed delirium can be dangerous.

Delusions, delirium, aggression and exit-seeking

Hallucinations and delusions: what to say

A hallucination is a perception without an outside source, such as seeing a person who is not there. A delusion is a fixed belief that does not fit the facts, such as the belief that a carer is stealing. Both feel completely real to the person. The aim is neither to confirm nor to dispute. It is to acknowledge the feeling, to offer safety and to change the situation around the person. Figure 8.2 contrasts typical responses to an accusation of theft. Acknowledging a feeling is not lying: “That sounds frightening” is true whatever the person has seen.

Note what the right-hand column has in common. Each response keeps the person’s dignity, offers an action and avoids a debate about facts. If a hallucination is not frightening, you can leave it alone. If the person is afraid, you can say what you are doing to help, such as switching on a light or sitting close. If the content of the delusion is the same every day, such as a missing purse, a “safe place” for the valuables and a note of what is where can help.

Aggression: protect, then understand

Aggression in dementia is usually a reaction to fear, pain, being overwhelmed or being cornered. In the moment, your own safety and that of others comes first. Keep an escape route behind you, avoid standing in a doorway that blocks the other person, keep your hands visible, speak slowly in a low tone, give space and do not argue or touch without warning. If you are in danger, step back and call for help. After the situation has calmed, look for the cause: pain, thirst, toilet, noise, a stranger, an intrusive task. Report the incident according to your organisation’s procedure, and note triggers and what helped. This is a team task, and nobody should be alone with an escalating situation.

Exit-seeking and walking with purpose

People walk for many reasons: a need to move, a search for a person or place, a habit from working life, boredom, pain or restlessness, or an attempt to escape an unpleasant situation. Many of these reasons can be addressed without any restriction. The goal is to turn a risky walk into a safe one. Accompany the person for a stretch, ask where they are going and listen to the answer, and then offer something that honours the intention, such as a walk in the garden loop, a task (“I need to check the shopping list”) or a cup of coffee. Where there is a real risk of leaving the building, the team agrees on a plan: who can notice, how the person is brought back, what the person wears and what information is on hand if they go missing. Do not make promises you cannot keep, and do not tell untruths that you will have to defend later.

Night-time restlessness and sundowning

Restlessness in the late afternoon and at night often has several causes working together: a disturbed body clock, too little daylight and activity during the day, pain, a full bladder, hunger, noise at night and a room that is unfamiliar in the dark. Review the day as well as the night. More daylight, a walk after lunch, a calming evening routine, a warm drink, and a quiet room with a low orientation light often help (Modules 6 and 7). Sleeping tablets are a medical decision, not a care routine, and are not part of this course.

Who decides what in your setting?

Responding in the moment

This page shows what a calm response to a difficult situation can look like, step by step, and gives phrases you can adapt. Every setting has its own procedures, and your team’s rules take precedence.

Worked example: Mrs Adler and the school run

Return to Mrs Adler from the beginning of this module. At about 4 p.m. she puts on her coat and heads for the door. The team uses the five steps in Figure 8.3.

1. Stay calm. The carer, Daniel (fictitious), does not block the door. He lowers his voice, stands to the side and greets her by name.
2. Walk alongside. “Mrs Adler, I will come with you.” He goes with her along the corridor, a little behind and at a distance she can accept.
3. Ask about the reason. “Where are you going?” She says that the children are waiting. Daniel replies, “You are worried about the children. Tell me about them.” She talks about her two sons and the school.
4. Offer a route. After some minutes he suggests, “Shall we have a coffee before we go, and walk through the garden room?” She agrees. They sit by the window, then walk the loop.
5. Report and review. Daniel notes the time (4 p.m.), the likely trigger (a former school-run routine), and what helped (accompaniment, talking about the children, coffee). At handover the team makes a fixed anchor point of a coffee at 3.45 p.m. and a short walk, and asks the son for photographs of the children.

Notice that nobody lied and nobody locked a door. The team respected the meaning of the walk and offered a safe form of it. They also checked for pain, thirst and the toilet, as they would on any day. The plan will need to be reviewed in a week, and the team will report any sudden change at once.

Two cases and what to take away

Making basic care dementia-sensitive

Everyday basic and nutritional care (Courses 06/07) places particular demands on care for people with dementia – this is where the principles of this course (understanding, communication, relationship, no coercion) merge with practical care. With personal hygiene (Course 06, Module 9): people with dementia often experience personal hygiene as threatening (they do not understand why strangers are undressing and washing them; fear of water/touch; shame). Helpful are: calm and time (no rush!), a familiar key carer, simple communication that announces each step, using habits/life history (when/how did the person wash in the past?), distraction and pleasant stimuli (music, a warm towel), basic sensory stimulation (Course 06), proceeding in small steps, and – very importantly – no coercion (if the person resists, stop, calm them, try again later/differently).

With nutrition (Course 07, Module 9): people with dementia forget to eat/drink, do not recognise food (contrasts!), can no longer remain seated at the table (finger food/eat by walking!), lose the ability to use cutlery, refuse. Helpful: a calm environment, finger food, contrasts, favourite dishes, patience, guidance, no coercion. The common denominator: knowledge about dementia (understanding, communication, relationship, life history, no coercion) makes basic care dementia-sensitive.

Relationship beats technique

The most important principle for basic care in dementia: relationship beats technique. Whether personal hygiene or a meal succeeds depends, for people with dementia, less on the ‘right technique’ than on the relationship, the atmosphere and the attitude. A familiar, calm, respectful carer who knows the person (life history!), takes time, communicates empathetically, conveys safety and exerts no pressure can make personal hygiene/a meal succeed where a hurried, unfamiliar, pushy member of staff fails. Conversely, the most common cause of ‘resistance’ to care is not ‘malice’ or ‘uncooperativeness’ but fear, being overwhelmed, shame, pain or disrespectful/hurried handling (Module 4). Those who understand this approach basic care differently: with relationship, calm, familiarity, empathy – and by understanding resistance as communication. In concrete terms: when the person resists, do not ‘push through’ or even use force (this increases fear/resistance, violates dignity and is legally impermissible – Courses 04/06), but stop, calm the person, understand the cause (pain? fear? wrong time? being overwhelmed?), and try later or differently (different time, different person, different order, more calm, distraction, in line with life history). Care often succeeds then. For care staff this is an important, relieving insight: you do not have to impose care ‘against’ the person but can shape it ‘with’ the person – through relationship, understanding and patience. This sometimes requires more time and creativity, but it is far more effective and dignified (and more pleasant for both sides) than a struggle. Dementia-sensitive basic care is thus a prime example of how the principles of dementia care (understanding, relationship, communication, life history, no coercion) improve everyday care practice.

This insight links the dementia course with basic care (Courses 06/07): the best care technique is of no use without the right attitude and relationship – and this applies especially to people with dementia.