Dementia and Alzheimer's: the most important questions and answers
The term dementia is understood to mean an impairment of the memory, which generally begins later in life and at the beginning mainly affects short-term memory, and later also long-term memory. In addition, language, thinking and judgment as well as temporal and spatial orientation may be limited. Typical of the disease is that it progresses steadily and can be influenced only insignificantly by medication.
Dementia can have many different causes, but in most cases occurs in the form of Alzheimer's disease. From a medical point of view, Alzheimer's is an exclusion diagnosis, so for every dementia, there is the suspected diagnosis of Alzheimer's disease as proof of another cause.
Alzheimer's disease is a neurodegenerative process characterized by the death of nerve cells. Neurodegenerative forms of dementia are most common besides vascular dementia, which is based on cerebrovascular damage.
There are a number of simple neuropsychological tests that can reveal a mental (cognitive) limitation. The Mini Mental Status Test (MMST) is most commonly used and has the advantage of being able to differentiate between mild, moderate and severe impairments of memory performance. In order to determine the cause of dementia more precisely, further examinations, such as blood and urine diagnostics, imaging procedures or a brain water examination, must be carried out following a positive neuropsychological test.
Dealing with the diagnosis Dementia is difficult for both the patient and the loved one, and is a challenge every day. A comprehensive understanding of the condition, its course, and its manifestations can help you better understand and classify symptoms and behaviors. The relief offered by institutions or volunteers in almost all regions and cities should be used as much as possible and should not be rejected because of false shame or feelings of honor.
Definition of dementia
Dementia is an acquired impaired brain function that leads to a decrease in the ability to think and to speak, language, and temporal and spatial orientation. According to the ICD-10 (International Statistical Classification of Diseases and Related Health) there is a dementia, if in addition to the memory disorder:
- at least one additional cognitive partial performance is restricted. These include:
- Speech disorders (aphasia);
- the inability to recognize and name things (Agnosie);
- the limited ability to coordinate movements (apraxia);
- the inability to plan, organize and follow the sequence of actions.
- the symptoms persist for more than six months;
- there is a chronic worsening of complaints;
- social or professional functions can no longer be completed;
- an awareness disorder could be ruled out for the presence of the symptoms.
Dementia is a disease of old age and increases in frequency as life expectancy increases. So it is not surprising that there have been more and more cases of illness in recent years, bearing in mind that life expectancy has doubled in the last 100 years and the number of over-80s has increased almost tenfold.
Causes of dementia
The causes of dementia are very diverse. In principle, the two major groups of primary and secondary forms of dementia can be distinguished from each other. The primary forms are characterized by processes that take place directly in the brain or on the nerve cells and lead to impaired memory function. These processes are progressing steadily and can only be stopped badly by conventional therapy methods.
The much rarer, secondary forms of dementia are symptom of an underlying disease that can in principle take place anywhere in the body, but also has effects on the brain.These forms of dementia do not progress, or only slowly, and are usually arrestable or reversible by treating the underlying condition.
Primary dementia forms
The most common form of dementia is Alzheimer's disease, which accounts for over 50% of dementia cases. Alzheimer's disease is a neurodegenerative disorder characterized by a progressive loss of nerve tissue that occurs primarily in the temporal lobe and hippocampus. These areas of the brain are important for understanding speech, hearing and smelling, but also for learning new things and their transfer into the long-term memory.
At the same time deposits of metabolic end products, so-called senile plaques, the occurrence of which correlates significantly with the progression of the disease.
Dementia due to circulatory disorders second most common form
The second most common form of dementia is so-called vascular dementia, which has a proportion of 15-20% and thus already occurs much less often than Alzheimer's disease. Vascular dementia in the broadest sense is caused by vascular damage. For example, as a result of stroke or arteriosclerosis, progressive cognitive impairment may occur.
Far less common are Parkinson's dementia, which occurs as part of Parkinson's disease, and frontotemporal dementia, the exact cause of which is still unclear. Typical of the frontotemporal dementia is a very early appearance (usually between the 40th and 60th year of life) of personality disorders and disorders of social behavior (such as lack of distance, sexual disinhibition, eating cravings), while the memory function is initially preserved.
Secondary dementia forms
Secondary dementia can be a concomitant symptom in a wide range of diseases. Infections, which can be associated with a limitation of memory performance, are for example HIV or the prion disease Creutzfeld-Jakob. But even years of alcohol consumption can lead to dementia symptoms as part of a Wernicke-Korsakoff syndrome. Processes that increase intracranial pressure or lead to lack of oxygen (for example, brain tumors or gas poisoning) can also be causally involved in the development of dementia syndrome, such as metabolic diseases (for example diabetes mellitus or disorders of thyroid function).
A very important differential diagnosis to a true dementia is the so-called pseudo-dementia, which can occur in the context of depression. Especially in older age, depression must always be considered as a possible cause of memory impairment and memory and concentration ability. Only then can the symptoms be improved by choosing the right therapy.
Signs and symptoms of dementia
The symptoms that can occur in the context of dementia are individually very different and are often recognized late. Furthermore, the disease does not always follow the same course and has very different effects on the psyche. The spectrum of manifestations of dementia is thus significantly expanded, which makes early detection of the disease even more difficult.
The memory ability suffers the most
The main symptom of dementia, however, is always a decrease in memory or mind, resulting in a significant restriction of daily life. The most important indication for the onset of dementia is the easing of the ability to remember: While the short-term memory loses its power already at the beginning of the illness, the long-term memory remains intact for a long time. In many cases it is even reported that suddenly there is access to very early childhood memories and these can be brought into safe temporal relationships. Long-term memory can thus experience a kind of renaissance at the beginning of the disease.
The disorder of orientation is another feature of dementia. Typical here is a limitation of the spatial orientation, which manifests itself, for example, by the non-rediscovery of your own home. In addition, there is often an inability to navigate new environments. But also the temporal orientation, which can be expressed by a suspended sleep-wake cycle, is often affected.
Speech disorders such as word finding disorders are attempted to conceal by inventing new words (neologisms) or imitating the language of the other person (echolalia), without paying attention to the content of the spoken word.
The psyche changes too
In addition to these symptoms, there are often impairments that do not affect the mind but the psyche or behavior. Thus, at the beginning of the illness, often caused by the conscious experience of mental decay, it comes to depressive moods.But also restlessness, euphoria, grief or aggression occur. The symptoms of the disease are downplayed and small strategies are developed to hide the deficits from relatives and friends.
In the course of the disease, the mood changes to an ever-growing indifference and indifference. Often, this phase of the disease is accompanied by other physical symptoms such as incontinence.
Dementia or pseudo-dementia?
Depression can lead to memory disturbances that are very similar to the symptoms of dementia. However, in depression no neurodegenerative processes are responsible for the pathogenesis, but a pronounced inhibition of thought. A detailed doctor-patient interview can provide evidence of the presence of pseudo-dementia.
Dementia usually begins with the loss of short-term memory, while long-term memory remains unaffected for a long time. In the case of pseudodemenz, on the other hand, short- and long-term memory are equally limited from the beginning of the disease. In addition, the memory disorders occur relatively abruptly in the context of depression, their beginning is usually remembered and is strongly complained. In dementia, however, the disease begins insidiously, usually without a time starting point and is often denied.
Depression or dementia: more differences
Depressed people often show themselves uncooperative, suffer from guilt feelings and give themselves impassively. Your mood is constantly depressed. In contrast, people with dementia (at least at the onset of the disease) cooperate well, strive to participate, and show very different moods.
Finally, a probationary therapeutic trial can provide information about the cause of memory problems: While the symptoms of depression improve with the use of antidepressants, they progress in dementia or do not respond to the medication.
Examinations and diagnosis
Although dementia is a disease that can manifest itself in many different facets, the diagnosis can be achieved relatively simply and safely by means of simple neuropsychological tests.
Probably the most commonly used test is the so-called Mini Mental Status Test (MMST). The MMST can be used to make an orienting assessment of the severity of a cognitive deficit or memory disorder. Checked are, among others:
- sense of direction
- computing power
- memory capacity
- Language ability and understanding
Depending on the score obtained, it can then be determined whether there is no dementia or whether a mild, moderate or severe dementia exists.
Somewhat more sophisticated testing procedures such as the Dementia Detection Test (DemTec) or the Early Detection of Dementia with Depression Exclusion (TFDD) can detect dementia at an early stage and provide important diagnostic information.
The cause must also be determined
Since dementia can have many causes, a whole series of further investigations must be carried out following a neuropsychological test procedure. The basic diagnostics include, among other things, the complete physical neurological examination and blood and urine diagnostics, for example, to detect metabolic imbalances that occur in the context of diabetes mellitus or thyroid dysfunction and may be responsible for the presence of decreased memory. Especially in the elderly, hypothyroidism may be similar to dementia or depression.
The use of imaging techniques such as CT or MRI can be used to detect space-occupying processes, vascular changes or brain shrinkage (atrophy). Increased intracranial pressure can also be detected by these methods. Depending on the suspected cause, finally, gene or brain water analyzes may be necessary for the final clarification.
Although Alzheimer's disease is the most frequently diagnosed form of dementia, there is no sure diagnostic criterion to prove its presence. Accordingly, Alzheimer's disease is an exclusion diagnosis that can only be made if no other cause of dementia has been found.
Treatment of dementia
While primary dementia can not be treated as a causative agent and therefore can not be stopped during its course, secondary dementia may prevent or reverse memory impairment by treating the underlying condition. No matter what form of dementia it is, the treatment success stands and falls with an early start of therapy. Although primary dementias continue to progress and deteriorate, they can be influenced.Especially in the early stages of the disease, much can be done to influence the course of the disease
General therapeutic measures
Like muscle power, memory can also be improved through intensive, continuous training. In dementia, especially the cognitive skills (combinatorics, arithmetic, image recognition) should be practiced regularly. But beware, the confrontation with the decline of the thinking performance can also have negative effects. By focusing attention on mental degeneration, a depressed mood can be triggered.
There are several methods of memory training that can be performed independently. In general, it is important to ensure that both short- and long-term memory are equally stressed and that the training is very regular and detailed.
Drug therapy of dementia
Two classes of medication are used to treat dementia. Cholinesterase inhibitors are used to treat mild and moderate forms of dementia, while Memantine is used in moderate to severe dementia.
Cholinesterase inhibitors like
- Donepezil (Aricept®,
- Aricept Evess®),
- Rivastigmine (Exelon®) and
- Galantamine (Reminyl®, Galnora®)
inhibit the breakdown of the transmitter acetylcholine in the brain, which is decreased in dementia. Although the role of acetylcholine in dementia has not yet been fully elucidated, there has been an improvement in memory performance under treatment with cholinesterase inhibitors.
Since acetylcholine is found not only in the brain, but also in many other organs, there can be a number of side effects: the most common are nausea, vomiting and diarrhea, which occur in 10% of all cases. Rarely, cardiac arrhythmias, slowing heartbeat, and gastric ulcers (1%).
Because dementia has elevated levels of glutamate in addition to the decreased acetylcholine levels, Memantine (Memando®, Axura®, Ebixa®) is used. Memenatin blocks the receptors for glutamate (NMDA receptors) in the brain and thus reduces the glutamatergic effect that is responsible for a number of symptoms of dementia. Memantine is used above all in severe forms of dementia. The active substance demonstrably prolongs self-employment. A reduction of the necessary hospital stays was also proven. Side effects may include headache, dizziness, confusion, and hallucinations.
The assessment of memantine is controversial among experts. There are those who consider an effect of memantine unproven, others point to therapeutic success, even in studies.
Beware of attenuating psychotropic drugs
In principle, in the case of dementia, the administration of anticholinergic substances should rather be dispensed with. For example, there are some neuroleptics that are used as psychotropic drugs for schizophrenia, which are also prescribed by some doctors as a sedative for Alzheimer's or dementia. Especially if hallucinations and similar symptoms occur, there are also some arguments for this.
However, these drugs lower the levels of Achetylcholine in the brain and can thus lead to a deterioration of cognitive performance. Caution is advised especially when there is depression in addition to dementia because the effect of tricyclic antidepressants is based on this effect.
Course and prognosis of Alzheimer's dementia
Predicting the prognosis of dementia or Alzheimer's disease is very difficult. On the one hand, different forms of dementia show different courses. On the other hand, one and the same form of dementia can individually take a very different course. Nevertheless, some trends can be described by the cause of the illness:
Alzheimer's dementia typically begins at an older age, usually after the age of 65, and develops slowly but steadily. The mean survival time after first diagnosis is 7-30 years in several studies. However, this number says nothing about the well-being or about the time of complete independence, which remains after the diagnosis.
Prognosis for vascular dementia
The vascular dementia is the result of a vascular disease, which usually also occurs only in older age. It can be continuous, but also shunt-shaped. During a spurt, there are often mood swings followed by a marked decline in mental capacity. Before and after such episodes, phases of clear thinking can exist. The course or prognosis of vascular dementia depends on many factors and can not be predicted.
Life expectancy is severely limited in rare frontotemporal dementia. Only a few patients live longer than 10 years, the remaining deaths from complications of the disease such as respiratory infections. Particularly bad in this form of dementia is the early onset at an early age.
Family members of dementia patients - what can I do?
If a person has dementia, the whole family is affected. Because the disease is not predictable and always provides surprises and a lot of excitement. That's why it's important to find out early and in depth about what to expect. You should be aware that dementia is a major challenge for both the sufferer and you.
Searching for help!
The diagnosis of dementia is accompanied by a lot of emotions and questions: A changing pool of feelings of fear, incomprehension, helplessness, anger, grief and despair are typical. But also very practical questions of everyday life can easily be overstrained: who takes care of the care and later the care? Who will pay for the costs? What happens to your own job?
You can not and should not answer all these questions yourself. Get support early. Best from the beginning and not only when you reach your limit. Caring for a person with dementia is a full-time job that is becoming increasingly demanding over the years. The danger of overworking is great.
For this reason, it is important to know which services you can and want to use. There are, for example, professional care services that come to your home and support you in personal hygiene and in the administration of medication. Furthermore, relief can be provided by a day care facility, which takes care of the dementia patient for a few hours. Valuable time to take care of your own affairs or just relax.
Dementia care: who pays everything?
Getting an overview of the costs and ways to take over dementia is not easy. The health insurance, for example, only covers the costs incurred to cover medical measures. These include the drug costs or wound management.
For the care of the person with dementia, on the other hand, the long-term care insurance is responsible. In addition to personal care, this also covers costs that may be incurred as a result of a change in the home or a failure of the main caregiver.
Care level must be determined
In order to apply for a reimbursement of costs, the classification into a nursing level must first have taken place. Because the respective services that you can receive for the care and support of the dementia patient are always based on the care level. The higher the level of care, the higher the claimable benefits.
Home accommodation is usually a private matter that you have to carry yourself. In a few cases, however, social assistance can also step in. This depends on your living conditions, your financial resources, but also on the nursing home itself.
In order not to lose track and to process all applications in a timely manner, you should contact a social counseling center or a care center, which can advise you free of charge.
Dealing with dementia patients: How do I behave now?
Many relatives are initially desperate and are not up to the challenge of living with a person with dementia.
But trust that you will grow into the task of care and nursing. Practice serenity and patience and try not to be disappointed. Over time, you will develop a good sense of what you need to do at what time, how to best respond to emotions and surprising situations, and how you can communicate with each other despite dementia. Then positive experiences and experiences soon become part of everyday life.
Communicating with a person suffering from dementia is not easy, but can be learned relatively well using certain rules:
- Confirm your counterpart by talking about things that went well. Try to avoid criticism as much as possible.
- Communicate the feeling of communicating on one level. Ask easy questions about how you feel and try not to raise any discussion.
- If you want to ask for information, ask questions that can be answered yes or no.
- Review important information and make sure that it has been understood. Use similar or same words or phrases when repeating.
- Do not accept accusations or allegations personally, stay calm, but determined.
- Always make eye contact while using the name of the other person.
- Allow sufficient time for discussions. A person with dementia needs a lot of space and rest to gather and answer.
Strengthen and support the memory
Train your memory ability with the dementia patient. Old photo albums are very good for this. Go through the pictures gradually and let the dementia sufferer speak freely about his life. The use of long-term memory, on the one hand, keeps it longer and also gives it self-confidence and self-confidence.
Like images, long-term memory can also be refreshed by other sensory impressions. Play old songs or sing together favorite songs. Spread odors associated with certain memories. Perfumes, flowers or the fresh scent of your favorite cake - all of these things bring out old, precious memories and give the person suffering from dementia a bit of life before the disease.
Structure the daily routine as simply as possible
To compensate for the loss of short-term memory, it is helpful to follow the same daily routine. This can also be written or in the form of pictures on paper and hung in well visible places of the apartment (for example, the refrigerator or on the bathroom door). Routine gives security and allows the person with dementia to find their own way of life a little better.
A group photo of all people who more often enter the premises of people with dementia (for example, family and caregivers) can be labeled by name and function and also represent a small reminder. While strangers often cause feelings of anxiety in people with dementia, familiar faces are a symbol of calmness and constancy that does not create unnecessary confusion.
Helping people help themselves
Duties of daily life such as personal hygiene, dressing, cooking or shopping are increasingly difficult for people with dementia. Your task is not to do all these things and to incapacitate the dementia patient so unintentionally. Rather, you should try to give some help. For example, remember forgotten things. Help with cooking without completely taking over the direction and have indulgence if it takes a little longer or has been forgotten several times.
In spite of everything, always stay calm, confirming and determined. Because then you have the opportunity to experience moments of success together and they will connect you, as in former times.
Authors: Lisa Wunsch, medical student & dr. med. Jörg Zorn
- Gerd Herold et al .: Internal Medicine 2015, Gerd Herold, 2015
- Peter Berlit: Clinical Neurology, Springer Verlag, 2006
- German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology (DGPPN): S-3 guideline "Dementia", https://www.dgppn.de/fileadmin/user_upload/_medien/download/pdf/kurzversion-leitlinien/REV_S3-leiltlinie-demenzen.pdf, last visited on 17.02.2017
- Breuer Foundation: Diagnosing Alzheimer's - which is important for relatives now https://www.breuerstiftung.de/alzheimer-info/leitfaden-angehoerige/#main_content, last visited on 17.02.2017
Comment on dementia and Alzheimer's
Dementia refers to a morbidly limited mental power that can have many different causes. A special and at the same time the most common form of dementia is Alzheimer's disease. It is said to affect 60% of people with dementia, according to estimates.
Typical of Alzheimer's dementia: abnormal protein deposits in the brain
There are essentially two basic states that lead to an increasing loss of function of the brain: either chronic circulatory disorders (vascular dementia) or the progressive decline (degeneration) of brain cells. The latter is the case with Alzheimer's dementia. Typical is the formation of specific protein deposits: plaques from beta-amyloid outside and fibrils from tau proteins within the neurons.
These abnormal structures paralyze the nerve cells and ultimately lead to their dying off. Why this happens is still largely beyond our knowledge. The real cause that triggers Alzheimer's disease is still unknown.
Assured diagnosis only after death, cause unknown
Incidentally, the way in which the mental restrictions are expressed hardly gives any indication of the special form of dementia. With the normal tests in the medical practice can only be proven that actually a dementia exists. In the wake of more intensive investigations and the exclusion of other causes, the specific dementia diagnosis Alzheimer can be accepted.
However, it can not be proved directly with blood values or imaging techniques (X-ray, etc.).That only works on the cellular level through an examination of brain tissue. So only after death. Although this last insecurity is not necessarily conducive to the emotional life of relatives, it has no consequences for dealing with the dementia patient in everyday life. Important is only the demarcation of dementia forms with treatable causes such. a disturbed blood circulation or a tumor.
Largest frequency in the ninth decade of life
Although Alzheimer's dementia can also occur at a younger age. As a typical illness of the old age, however, she does so beyond 80 years. And in the vast majority of cases, it does it "sporadically" - that is, without a known cause and without a strict inheritance process. Apart from the much rarer familial, mainly genetic variant. It has a much earlier onset of illness, often between the ages of 30 and 60.
Anyway, the rising life expectancy is probably the reason why the incidence of dementia and Alzheimer's seems to be increasing. Added to this is the increased medical and public awareness of this syndrome. It is estimated that one in five people over age 85 has Alzheimer's symptoms. Why this is so and whether it used to be - with less life expectancy less noticeable - was already so, is unclear. Between the ages of 65 and 75, the probability of disease is "only" 2 to 6%.
According to official data, more than one million people are currently affected by dementia in Germany. 700,000 of them are of the Alzheimer's type. Each year, about 120,000 Alzheimer's diagnoses are added.
Creeping onset of the disease makes recognition difficult
Alzheimer's dementia can unfortunately only be recognized as such when brain function has already been affected and the first symptoms are noticed. There is no screening test that could detect the danger, as in the case of some cancers. And even the detection of the symptoms is not easy in the early stage of the disease. The course is often so insidious that the first signs are not recognized even in the immediate environment of the person concerned for a long time.
It is by no means always the memory disorders that are the first to stand out. Also because they are often masked out of shame. Lack of power and energy, lack of drive, increasing lack of interest in new things and personal withdrawal are often perceived more. Also typical are slight states of confusion.
On the other hand, slight forgetfulness or absent-mindedness occurs more frequently in old age, without the need to immediately attribute them to a medical condition. It is rather the degree of expression and above all the combination of changes across several areas of life and personality that should be taken seriously as a reason for medical clarification. For despite the still limited knowledge and opportunities in dealing with Alzheimer's dementia applies: Early treatment can affect the course relevant.
Dementia can be delayed but not cured
With targeted exercises for concentration, memory or even calculating ability, mental decline can be delayed relatively well. This does not mean the well-publicized and popular brain jogging that can easily frustrate people who are already demented and then further affect their emotional distress. Rather, it is about an individually adapted, not overwhelming training - at home or in a group, preferably under professional guidance.
Unfortunately, it is not possible to completely halt or even cure existing Alzheimer's dementia with this cognitive training. This also applies to the other treatment methods, which include psychotherapy and sociotherapeutic procedures as well as various medications. Donepezil, galantamine, rivastigmine, memantine or herbal ginkgo preparations are mainly used as active ingredients. These anti-dementia drugs are said to have a beneficial effect on brain metabolism and function, inhibiting nerve cell degeneration and thus conducive to the everyday abilities of patients. You should not expect any miracles (even if that sometimes sounds like this in pharmaceutical advertising to doctors). Whether the effect justifies any possible side effects is ultimately - after a sufficient period of observation - always an individual decision.
In addition to anti-dementia drugs are also often prescribed for depression (antidepressants) and attenuating psychotropic drugs (neuroleptics) against states of excitement. In both cases, these are frequent and debilitating side effects of Alzheimer's disease.
Disease course hardly predictable - empathic attention of central importance
Unfortunately, how hard and how fast a dementia disease progresses can not be reliably estimated. On average, there are about 7 years from diagnosis to death. But it can also be 20 years. All in all, Alzheimer's treatment is all about alleviating or preventing the symptoms. The mental and everyday competence of the person concerned should be strengthened as much as possible.
Central to this is an understanding and loving, activating and reactivating attention to dementia patients.That's also the hardest and the hardest thing. In the more advanced disease or care stage, not only a huge expenditure of time and effort is connected. Dealing with the demented person requires a caregiver's utmost empathy - to empathize with the deficiencies of the patient and his remaining resources.
Although sometimes it is not easy: It is always true to respect the loved one. Even though he often can not do what he or she actually wanted (and should) do. Relatives skills training can help to avoid being overwhelmed by this situation.
Author: Dr. Hubertus Glaser