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Dementia is often a very sensitive and emotionally charged subject for those affected and their families. People with early-stage dementia usually notice themselves that many things in their everyday lives are not working any more – and that can be frightening. This is why tact and sensitivity are needed when you broach the subject.

The following points can be helpful when raising the issue:

• Use ‘I’ messages: It is better to describe your own observations and feelings, rather than reproaching someone. Example: “I’ve noticed you forgetting appointments more often lately. That concerns me.” 
• Avoid the word “dementia”: The word “dementia” is often frightening. This is why it is wiser simply to describe what you see.
• Offer support: When offered concrete suggestions, the person affected will realise you want to help them. For instance, you might offer to go and see the GP together.
• Be patient: The person affected might not want to talk about their difficulties. It is important to give them time but also to offer regularly to look for solutions together.

No, a dementia diagnosis definitely does not mean immediate loss of mental capacity or automatic restriction of legal capacity.

Dementia is usually a slowly progressing disease. In that respect it differs, for instance, from a severe stroke or an accident in which mental capacity can be lost from one moment to the next.

It is important to recognise dementia at an early stage. This leaves those affected time to put their personal affairs in order: drawing up a lasting power of attorney and a living will, settling inheritance matters, considering how they want to spend their remaining time. This means they can make provision for the time when they are no longer able to make their own decisions.

It is generally a good idea for the people around you to be told about your dementia and know the reason why you are having certain difficulties in your everyday life.

It can help to have a conversation in your own surroundings:

• You don’t have to tell everybody everything. It is enough for close family and good friends to know. If you are still working, you should also tell your boss, see Legal issues and making provision.
• You need time and somewhere quiet for this kind of conversation and don’t tell too many people all at once.
• Those affected can also make it clear how they would like people to handle them and their disease.

• After diagnosis: A diagnosis of dementia can trigger a lot of things in those affected and their families. It is normal for feelings such as shock, grief, fear or anger to emerge. It is important people take time to process the diagnosis. An open dialogue with the family or selected individuals can help in this process.
• Find out about support: It is worthwhile finding out soon about possible sources of support. In the early phase of dementia, that means advice services and self-help groups, in particular. See Services and Support.
• Organise important legal matters: It is important for those affected to deal with matters such as a lasting power of attorney, an advance directive (living will) or writing a will as early as possible. See  Legal issues and making provision below on this page.
• Despite being diagnosed with dementia, many people can continue their usual activities. If tasks are overwhelming, people should seek relief.

Even though a dementia diagnosis does not immediately result in incapacity for work, you should inform your employers and colleagues soon. Concealing the fact leads to unnecessary stress. In addition, you will lose valuable time which could be used for planning your continued employment in the company.

Any reduction of workload, dismissal or early retirement will entail considerable financial losses. This is why it is important to get sound advice before having the conversation with your employer. Various institutions offer advice from professionals:

• Inclusion Handicap
• Procap Rechtsberatung
• Pro Infirmis
• Alzheimer Zürich

The same rules under employment law apply to dementia as to any other disease. Protection against dismissal and continued payment of wages are regulated by law. Notice periods vary and depend on years of service, the presence of a collective bargaining agreement (GAV), an individual agreement and daily sickness benefits insurance. You are strongly advised to seek advice from experts.

One parent having dementia will have a major impact on the children. There is a risk that the children will miss out and be overwhelmed by the situation. You therefore need to have an open dialogue with your children. Affected families also should not be afraid of accepting support when they need it.

When a person with dementia has lost mental capacity to make decisions, it is the other parent in that couple who takes full responsibility for the children.

It is impossible to generalise when answering this question. It depends on the individual progression of the disease. Furthermore, mental capacity is always tested in relation to a specific action or decision. Someone may still have mental capacity to make day-to-day decisions, but not about selling their house, for example.

Since the Adult Protection Law came into force, the Child and Adult Protection Authority (KESB) has played a key role in assessing mental capacity.

If a lasting power of attorney exists, the KESB must decide when this is enforced.

However, the right to self-determination of the affected person is always respected. If there is no advance directive (living will), the KESB may set up guardianships for specific areas (e.g. finances or parenting of minor children). Under the new Adult Protection Law, total legal incapacitation no longer exists.

Generally speaking, the sooner the better as far as advance planning goes! Diagnoses are often made late, so that those affected might have become incapable of setting out their wishes in writing.

The following documents should be drawn up:

• Lasting power of attorney: A lasting power of attorney enables you to appoint a particular person who will take on responsibility for legal, financial and personal matters. In Switzerland a lasting power of attorney (Vorsorgeauftrag) must be handwritten in its entirety, it must include the place and date and be signed, or be certified by a notary.
• Living will/advance directive: A living will or advance directive (Patientenverfügung) stipulates what medical measures should be taken in the event of someone losing their mental capacity. For instance, it can include stipulations on whether or how long life-sustaining measures should be carried out. 
• Emergency care plan: An emergency care plan (Notfallplan) acts as a guide for all those involved (patients, family members and treatment team) in a medical crisis. In combination with having the most important drugs to hand, unwanted hospital stays can be avoided. The plan should also set out what life-prolonging measures are wanted if the patient loses mental capacity to make decisions. The emergency care plan is usually drawn up by a healthcare professional.
• Will: In your will you can stipulate what happens to your estate. This makes things easier for the people who will inherit because it creates clarity and avoids disputes. In Switzerland a person’s will must be handwritten in its entirety, it must include the place and date and be signed, or be certified by a notary.

Without a power of attorney or living will, the spouse or civil partner, or in the case of unmarried people close relatives, will take on certain duties representing the person with dementia (e.g. in medical or financial matters). In unmarried couples, the partner has no automatic right of representation.

The same terms and conditions apply to dementia as to any other disease. Treatment costs are covered by your basic insurance policy and – if you have any – supplementary insurance policies.

Nursing costs are partly met by health insurers, partly by the people affected themselves and partly by the cantons and municipalities in Switzerland. The people concerned have to bear the costs of accommodation and meals themselves when they stay in a home. If their own financial resources are not sufficient, they can apply for supplementary benefits.

A structured daily life can give people with dementia a sense of security and orientation:

• Regular times for everyday activities, such as mealtimes, can create a sense of routine and provide stability.
• Simple daily schedules provide orientation.
• Rituals, such as going for a walk together every day, help to structure the day. Activities should be matched to the persons’ capabilities and should include breaks.
• Visual aids such as pictures can create additional orientation.

There are a lot of aids that can support people with dementia in their daily lives:

• You can make a note of important information on calendars, sticky notes or whiteboards.
• For people who know how to use digital devices (smartphone, tablet, computer), there are also apps for recording and structuring important information.
• Communication tools such as picture cards can be used to express thoughts or needs.

Besides that, there are various technological devices and aids to help keep people safe:

• GPS trackers or door alarms can be helpful for people who often wander or get lost.
• Electrical appliances with an automatic cut-off can prevent accidents.
• Home security solutions offer various types of alarm systems. For instance, they can alert someone if the blinds are not opened or closed at the usual time in someone’s  home.
• Good lighting is very important as well as grab rails and non-slip mats in the bathroom.
• Thermostats for the hot water help to avoid burns.
• Rollators and wheelchairs will help when someone is no longer able to walk very well without assistance.

The choice of appropriate aids should be matched to the needs and capabilities of the person concerned. Advice from professionals is strongly recommended.

Dementia causes difficulties with language and understanding, which worsen steadily over time and make it harder for people with dementia to interact with those around them. Friends and relatives have to learn how to adapt their communication.

These tips can be helpful:

• Approach people from the front and try to make eye contact: you should always converse at the same eye level with people who have dementia. It is important to establish eye contact before every conversation and address the person by their name.
• Speak slowly and clearly: People with dementia need to be given time to understand what has been said. Pauses between sentences can help with that.
• Simplify content: You should avoid long sentences, technical or foreign words or even irony. At the same time it is important to use adult-appropriate language. “Baby talk” is demeaning to the other person
• Ask simple questions: Questions that can be answered “Yes” or “No” are easier than questions such as “Why?”.
• Listen attentively: People with dementia also need you to listen to them carefully. If they have not expressed themselves clearly, it is always OK to ask.
• Don’t be critical: You should let wrong statements and assertions just stand. Arguing and contradicting are rarely helpful, but mainly result in stress and tense situations.
• Don’t take things personally: Sometimes people with dementia may criticise and blame the person dealing with them. Feelings such as helplessness, insecurity and frustration often lie behind this. The criticism is rarely meant personally. In such cases it is best to take a short break, then change the subject afterwards.
• Take concerns and feelings seriously: It can be difficult to identify and understand the needs and wishes of people with advanced dementia. Nevertheless, it is important that people affected are taken seriously.

People with dementia find many activities increasingly difficult. There are other things they can still do well and enjoy doing. It helps to concentrate on these positive activities. These moments can be shared together and emphasised. This provides validation and a better quality of life.

The feelings and experiences of people with dementia should be taken seriously. Caregivers should try not to correct “untrue” statements but concentrate on the feelings lying behind them. In this way, they can build up trust and reduce stress. Attempting to bring people with dementia back to “reality” will often cause merely frustration and withdrawal.

People with dementia often have a better memory of things that are long past. When they are able to talk about the past and someone listens to them, they feel appreciated and capable.

It can be extremely valuable to talk to people with dementia about earlier times, look at old photos together or listen to music from the past. It helps those affected to understand themselves better and gives them a feeling of identity.

When doing this, it is important to adopt a cautious approach and place special emphasis on positive memories. This can promote wellbeing and reduce anxiety.

Dementia can make living together more difficult and can be very challenging. Potential difficulties include:

• Loss of independence: People with dementia increasingly need support with activities of daily living, such as getting dressed, eating, personal hygiene or orientation in their own home. This leads to growing dependence on family members, who often have to take on more and more tasks for them.
• Communication problems: Conversations become more difficult because those affected can no longer remember words, names or relationships. They lose their sense of time, repeat themselves or cease to understand complex sentences. This can result in misunderstandings and frustration on both sides.
• Changes in behaviour: The personality of people with dementia can change. Those affected sometimes become mistrustful, anxious, irritated or even aggressive. Family members often find it hard to accept and cope with these changes.
• Emotional stress and role reversal: Family members, especially partners and children, experience a role reversal. Partners become carers, children become caregivers to a parent. This can place excessive demands on the family and cause grief, shame or feelings of guilt. Their emotional closeness frequently suffers from the new situation, but it can also bring them closer together.
• Danger in daily life: People with dementia often underestimate their limitations and want to continue hazardous activities such as driving or cooking. This can lead to risky situations, which families have to supervise or prevent.
• Social isolation: As the behaviour of people with dementia can be hard for outsiders to understand, families often withdraw. Grandchildren or friends might avoid contact because dealing with the situation becomes difficult or stressful.

Important: A respectful, patient approach, finding out about the disease and accepting help are crucial to reducing the stress and making it easier to live together.

These strategies can help:

• Show acceptance and understanding: You should accept the altered reality of people with dementia and take seriously their mental world. You should avoid correcting, criticising or rebuking them, even if things they say or do seem wrong.
• Clear and simple communication: Short and simple sentences make communication easier. Gestures, touch (if welcomed) and eye contact will aid understanding.
• Avoid criticism, arguments and being self-opinionated: You should avoid arguments, telling people off or insisting on the “correct” memories. Accusations and allegations by people with dementia usually arise because they feel helpless and frustrated. The best thing is to ignore these and change the subject.
• Provide structure and orientation: A well-ordered daily routine with set times for meals, rest and activities is reassuring. Hectic, loud or challenging environments should be avoided. You need to allow enough time for exceptional events.
• Explore feelings and reassure: The feelings of people with dementia are important, not just their words. If they seem about to become agitated, it is helpful to focus their attention on positive and pleasant things.
• Recognise early warning signals: Being overwhelmed, hunger, tiredness and pain can escalate matters. It is therefore advisable to take action early and remove the causes.
• Take your own stress seriously: If caregivers are stressed, conflicts with the person receiving the care become more likely. It is important to give yourself breaks and seek support.

These strategies can help to prevent or at least defuse a lot of conflicts so that living together becomes less tense for all involved.

Exercise is healthy for people with dementia for a number of reasons.

• Regular physical activity can boost blood flow in the brain. This improves the supply of oxygen and nutrients and supports cognitive functions.
• What’s more, exercise improves muscle strength, balance and coordination, thereby reducing the risk of falls. This helps people maintain their independence in daily life for longer.
• Exercise also has a positive impact on mood: it enhances wellbeing, reduces stress and depressive symptoms and encourages social contact through group activities such as dancing or going for walks.

Regular exercise significantly contributes to the quality of life of people with dementia.

You can train the brain in a variety of ways: with board games, reading, creative crafting, music, singing, exercise, contact with an animal and generally contact with other people in shared activities. It is obviously important to ensure the activities are suitable for the skills and interests of the person concerned.

Various organisations offer activities that improve brain performance, mostly under the heading of “memory training”.

Training apps can be another option, although they may require guidance and instruction.

Social contact can reduce the risk of dementia in a number of ways:

• Cognitive stimulation: Conversations and human interaction put demands on the brain at different levels, such as hearing, understanding, remembering as well as perception of tone of voice and facial expression. This trains concentration, memory, the senses and language ability.
• Building up cognitive reserve: Social activities help to network nerve cells better and strengthen connections. This increases the brain’s “cognitive reserve”, so that it can compensate for damage longer.
• Reducing loneliness: People who feel lonely have up to twice the risk of developing Alzheimer’s.
• Improving wellbeing: Regular social interaction can enhance general wellbeing. It can also lower the risk of depression, which is considered a risk factor for dementia.
• Promoting an active lifestyle: Social activities are often associated with physical exercise, which additionally lowers the risk of dementia.
• Active participation: Actively participating in social activities is more important than passively receiving social support. It can help people to have a role and function in society.

Studies show that especially social engagement and the frequency of social contact are a protective factor against dementia. It is important to maintain social connections throughout life and be open to meeting new people in order to build up and maintain a strong social network.

See Services and Support under “Social contact, activities and self-help”.

Caregivers and supportive relatives do a significant but also a demanding job. So that their own health is well looked after, it is important for daily life to be well organised:

• In the person’s own home, you can remove trip hazards and install orientation aids to make daily life simpler. In addition, there are tools that can support people with dementia in their everyday life. See Services and Support under “Respite, caring, safety”.
• Shared activities and memories create positive moments. However, it is important to react flexibly to how the person concerned feels on the day and not to set expectations too high. In this way, unnecessary stress can be avoided.
• It is advisable to get well-informed at an early stage and to exchange experiences with other family members, if need be. You should discuss and sort out financial and legal matters early on.
• Families should pay attention to their own limitations. Purposely scheduling free time and accepting support are extremely important. Yet a lot of families find it hard to set limits, to ask for help and hand over responsibility. Talking to people close to you can be valuable and offer some relief. Professional counselling and self-help groups can also provide support.

Day centres (see Services and Support under “Respite, nursing, care and safety”) provide relief for caregiving family members and offer social contact and activities for those who have dementia.

• Occupational therapy and physiotherapy
• Memory training
• Accompanied walks
• Games afternoons
• Creative crafting
• Dancing, singing and making music
• Concerts and lectures

Of course, the individual needs of the person affected are taken into account: they decide for themselves which activities they wish to participate in.

Other forms of support can be found on the page Services and Support.

The right time for professional care or a nursing home in cases of dementia differs from individual to individual. Here are a few indicators:

• When a person’s safety at home is no longer guaranteed, perhaps due to the risk of falls or a tendency to wander.
• As soon as the family can no longer cope with the caring responsibility.
• If the person needs medical treatment that cannot be provided at home.
• If the person affected is increasingly confused and needs round-the-clock care.
• If changes in behaviour occur, such as aggressiveness, which are difficult to handle.
• As soon as the person’s quality of life in their home is significantly reduced.
• If the housing situation is no longer suitable and cannot be adapted.
• If social isolation is imminent.

It is important to talk about options early and to proceed step by step, perhaps starting with day care on certain days of the week. Decisions should always be made jointly with the person living with dementia, if possible. 

The grief around someone who is seriously ill but is still alive is just as real and painful as the grief we feel after someone dies. However, it is often less well recognised by society. The following approaches can help to deal with this special form of grief:

• Admit your feelings: It is helpful deliberately to let out your feelings, such as pain, anger, longing or despair, and not suppress them. Grief is a natural healing process.
• Seek dialogue: Sharing thoughts and experiences can be a relief and a comfort, whether talking to trusted individuals, in dialogue with a professional or in a family support group. See Services and Support under “Social contact, activities and self-help”.
• Keeping a diary or writing a letter can also help to organise your own thoughts.
• Rituals and memories: Even though the person you are grieving is still living, consciously keeping memories alive can be helpful – perhaps with photos or small rituals. This creates space for the feelings and recognises the significance of the relationship.
• Self-care: Regular rest will help to maintain your own physical and mental health. Small pleasures and taking deliberate breaks will also strengthen emotional resilience.
• Professional support: If grief becomes too overwhelming or even tips over into depression, it may be helpful to turn to counselling or therapy services.

Palliative care is a broad concept that encompasses counselling, support and care of people who are suffering from an incurable disease. The independence of the person affected should be preserved for as long as possible and the best possible quality of life should be achieved. Palliative (relieving) and curative (curing) treatments complement each other.

As people with advanced dementia often cannot communicate their wishes anymore, it is very important to draw up a living will/advance directive at the beginning or – even better – before a person gets ill.

More information about palliative care can be found on the Stadt Zürich website: Palliative Care.

Active euthanasia (where a third party ends a person’s life, for instance by lethal injection) is strictly prohibited and a criminal offence in Switzerland. Assisted suicide or “accompanied suicide” by organisations such as Exit is permitted, provided it is the person wishing to die who takes the lethal medication.

However, it is a precondition of assisted suicide that the person concerned still has mental capacity at the time of the decision and when taking the lethal medication. Therefore people with dementia can only utilise assisted suicide if they still have mental capacity at the time of carrying out the act and are able to express their wish clearly, permanently and without support from other people.

As soon as mental capacity is lost because of advanced dementia, assisted suicide is no longer permissible in Switzerland. A living will/advance directive that stipulates accompanied suicide for this eventuality is not sufficient to meet the legal requirements.

Assisted suicide of someone who lacks mental capacity is manslaughter under criminal law and is prohibited in Switzerland.