What do you think about dementia

Answers to common questions

1. What do "dementia" and "Alzheimer's" actually mean?

Dementia is one of the most common health problems in old age. In medicine, "dementia" is a persistent or progressive condition in which the abilities of memory, thinking and / or other areas of the brain are impaired. Often there are also changes in interpersonal behavior and drive. Thus, the medical use of the term differs significantly from the translation of the term from Latin ("lack of understanding").

The term "dementia" describes a certain pattern of symptoms ("syndrome"). He himself does not represent a specific illness.

Dementia can have many causes, with Alzheimer's disease (named after the psychiatrist Alois Alzheimer) being the most common: it causes around 60 percent of all dementias. It causes nerve cells and nerve cell contacts to gradually perish in certain areas of the brain.

Further information on the subject can be found on our information sheets:

2. How common is the disease?

Around 1.6 million people in Germany are affected by dementia (as of 2020). Most are 85 years or older.

The frequency of dementia increases with age: if less than 4 percent are affected in the age group from 70 to 74 years, it is already more than 12 percent in the 80 to 84-year-olds, and in the over 90-year-olds with just under 41 Percent even around two fifths. In individual cases, however, people under the age of 65 can develop dementia (around 0.1 percent between the ages of 45 and 65).

Since the number of old people will continue to grow in the next few years, it can be assumed that the number of people with dementia will rise to 2.4 to 2.8 million by the year 2050, unless there is a breakthrough in therapy.

Further information on the subject can be found on our information sheet:

3. Is there a prevention?

So far there is unfortunately no protection against developing Alzheimer's. But there are some factors that can reduce the risk of getting sick.

This includes:

  • mental, physical and social activity,

  • balanced diet with lots of fruit and vegetables, rich in vitamins C, E and beta-carotene,

  • Low-fat and low-cholesterol diet, preferably unsaturated fatty acids and

  • the treatment of high blood pressure, cardiac arrhythmias and diabetes mellitus.

4. How is the diagnosis made?

A careful diagnosis includes a thorough examination of the physical and des intellectual State.
Psychological tests are used to test memory, thinking, language and perception. Physical examinations also serve to exclude other diseases Laboratory regulations and imaging procedures such as computed tomography or MRI. This is especially important conversation with the person concerned and their relatives (anamnesis).

The diagnosis can be made by experienced doctors or specialists in neurology and psychiatry. Memory clinics (also known as “memory clinics”) are particularly specialized facilities for diagnosing and treating dementia.

Addresses of the memory clinics sorted by postcode

Further information on the subject can be found on our information sheet:

5. Should people with dementia know their diagnosis?

Basically, patients have the right to be informed about their diagnosis. But they also have the right not to know about the diagnosis. Talking to the doctor can clarify whether and how much someone would like to know about their illness. The necessary and desired information must be conveyed in a language that those affected can understand.

At first it is certainly shocking and painful to find out that you or a family member suffers from dementia. The medical diagnosis can also be an important aid. It gives an explanation for the existing problems, forms the basis for a targeted treatment and is an important prerequisite for future life planning.

6. What treatment options are there?

Alzheimer's disease is still around today not curable, however, the progression of symptoms can be temporarily delayed. Medicines ("antidementia drugs") are available that can maintain mental performance for about a year and also have a positive effect on coping with everyday life.

In order to improve the quality of life of dementia sufferers and their relatives, but also to alleviate behavioral disorders, the doctor can prescribe occupational therapy, speech therapy (speech therapy) and physiotherapy. Other non-drug approaches such as music and art therapy, behavior therapy, self-maintenance therapy, or memory therapy can also be very helpful. The personality and the individual characteristics of the sick should always be taken into account.

Human Affection, activation and employment, appropriate handling of behavioral problems and dementia-friendly Shaping the environment ("Milieu therapy") are also of particular importance for people with dementia.

Further information on the subject can be found on our information sheets:

7. What tips are there for dealing with people with dementia?

Dementia has a different course, and the needs and behaviors of those affected are just as different.

The patient's behaviors change as the disease progresses, and physical symptoms often increase. Dementia can take many forms. Some of the sick are friendly, some are aggressive, some are physically healthy, and some are bedridden. The clinical picture not only changes in the course of the disease, but is often also dependent on the form and time of day.

The caregiving relatives are also in very different situations. Usually it is the older spouses or the children or daughters / sons in law who also have their own families to look after and / or are employed.

There are therefore no general recipes for dealing with dementia sufferers, but it is important to try out what helps in individual cases.

The following tips and manners have proven themselves in practice:

  • Accept the disease instead of denying it.

  • Acquire knowledge about the disease and adjust to its course.

  • Observe the patient, his behavior, his expressions and try to understand them.

  • Adjust your own behavior to the patient, for example speaking slowly and clearly, giving attention, ensuring a constant but flexible daily routine, creating security and security.

  • Do not point out the patient's mistakes, correct, criticize or overwhelm him.

  • Preserve existing skills that involve the sick in everyday activities that they enjoy. In doing so, tie in with familiar patterns of action. What likes and dislikes does the patient have?

  • Adapt the external living conditions, e.g. securing gas and electrical appliances, night lighting, suitable clothing, armbands or notes with name and address, if the patient tends to leave the apartment.

You can find more information on dealing with people with dementia in the “Relatives” section and in our brochure “Living with people with dementia”. To the Online shop

8. How can support groups help relatives?

Caregiving relatives are affected by dementia in many ways. Nobody can and has to take over the tasks of care and maintenance on their own in the long term.

The aim of self-help and discussion groups is regular Exchange of personal experiences with people with similar experiences. Many relatives find this a relief.

The common conversation, the exchange of practical tips, Suggestions and experience with professional Help on site can make everyday contact with the sick easier. If necessary, you can Experts (e.g. doctors, lawyers, etc.) can be invited on certain topics.

There is now a nationwide range of self-help groups for caregiving relatives of dementia sufferers. We have created an overview of contact addresses for you.

If there is still no offer in your area, you have the option of setting up a group yourself. Information (brochure "Groups for relatives of dementia patients") and support are also available from the German Alzheimer's Society.

9. What care and care options are there for people with dementia?

About two-thirds of people with dementia are in the Familys supplied and cared for. In some cases, the family carers are supported by outpatient care services supported.

Visiting some sick people Day care facilitiesin which they are looked after and activated during the day. At the same time, the relatives are relieved. Increasing too Care groups in which those affected are looked after by appropriately trained volunteers once or twice a week for a few hours. There are also volunteers Helperswho take care of the care at home by the hour.

If the relatives are temporarily unable to take over care, for example due to illness or vacation, temporary accommodation in facilities is the Short term care possible.

If home care is no longer possible, those concerned can go to a residential community assisted on an outpatient basis live for people with dementia, which are not yet available everywhere. There is also care in an inpatient facility, a Nursing home, in question.

The regional Alzheimer's societies provide information on the corresponding offers and facilities in the respective regions.

Further information on outpatient assisted living communities:

10. Do people with dementia have a right to long-term care insurance?

Since January 1, 2017, long-term care insurance no longer distinguishes whether someone needs help due to physical or mental limitations.

The diagnosis is not decisive for classification in one of the care grades from 1 to 5, nor is a certificate required for an application for long-term care insurance benefits. During a home visit, an expert from the medical service assesses how much the person's independence and certain skills are restricted and how much support is required in various modules. This also includes the cognitive and communicative skills as well as the ability to organize the daily routine, which are limited in people with dementia early in the course of the disease.

More detailed information on this can be found in our Guide to long-term care insurance as well as our information sheet 8 - Long-term care insurance

The Federal Ministry of Health provides a website with the help of which you can have your individual benefit claims compiled:
The care assistant

11. What should be considered when choosing a nursing home?

Anyone who would like to accommodate a relative with dementia in a home should find out about the homes in the region in good time (there are waiting lists in some cases) and make an appointment with the home or care service management. In the conversation and when visiting the facility, particular attention should be paid to the following points:

  • Does the home have a care concept that takes into account the special needs and behavior of people with dementia?
  • Are relatives involved, is their knowledge of the patient's behavior, likes and dislikes used?
  • Is there day-to-day care for the residents or are they left to their own devices?
  • Are there offers to activate the residents, for example by singing, making music, dancing, exercise, going for a walk, occupation, animals?
  • How is the atmosphere and tone in the home? Are the residents treated with dignity?
  • What is the size and equipment of the rooms and the sanitary facilities? Can you bring your own furniture? Can a garden be used?
  • How are measures restricting freedom dealt with?
  • A sample of the home contract, in which all services and costs are listed, should be read carefully before the contract is concluded.

More detailed information can be found in the appendix to our guide "Moving to a nursing home".

12. What are the options if people with dementia can no longer make important decisions themselves?

At a certain point in time, people with dementia are no longer able to make decisions on their own in individual areas that affect them.

As long as the legal capacity is still preserved, they can use the decision-making authority through a Power of attorney transferred to one or more other persons.

Requests for medical and medical treatment, also with regard to life-prolonging measures, can also be included in a Living will be formulated.

If there is no power of attorney, it is usually necessary to obtain one from the responsible supervisory court (district court) legal support to stimulate. The care can extend to all matters that require regulation in the event of illness, for example asset management, health care, housing issues, etc.

With the care law in force since January 1992, incapacitation was abolished. Those affected now only receive support in areas that they can no longer handle themselves. The supervisors appointed by the supervisory court are obliged to take into account the wishes and needs of those affected as far as possible.

You can find more information on the subject on our information sheets

the recommendations for handling advance directives in the case of dementia

and in the "Guide to Legal and Financial Questions".

The brochure “Care Law” from the Federal Ministry of Justice is also helpful.

13. How can I support research?

Research in the area of ​​dementia is carried out on many different levels.

  • Basic research is about studying the biological causes and mechanisms of the disease.
  • Clinical research is about the development of drugs or other therapeutic approaches.
  • Health services research is about improving living conditions and providing support for people with dementia and their relatives.

In clinical research as well as in health services research, studies are repeatedly carried out for which volunteers are sought as participants. The DAlzG regularly informs about serious studies of health services research in its newsletter.

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Information on participating in clinical trials can be found on our Information Sheet 12: Clinical Research

If you want to make your brain available for research after your death to support basic research, you can contact the Brain-Net. Brain-Net is a network of university institutions with various focuses in diagnostics and research that are building a nationwide brain tissue database. www.brain-net.net

Since the amendment of the Medicines Act in December 2016, group-profit research on persons unable to consent has been permitted on the basis of a ruling. Previously, it was forbidden, for example, for people with advanced dementia to take part in research projects that were of no use to them themselves. This will be possible in the future if a person has signed a decision in advance, in the state of being able to give consent and after medical advice.

You can find more detailed information on research as well as current calls for participation in studies on our research pages

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