How long do people with Alzheimer's disease live

The course of dementia: Findings from research

In the new series “Affected people report: The course of dementia”, Marcus Klug shows, on the basis of three extraordinary case studies, how the health stories of people with dementia can be “read”. As a conglomerate of highly subjective conditions and scientifically verifiable patterns.

Before we deal more intensively with three case histories in the next few articles within this new series, this overview article first addresses the question of which scientific findings are relevant to the course of dementia. So are there certain patterns that keep cropping up in a form of dementia like Alzheimer's disease, in terms of the clinical picture, cognitive decline, the course over time and certain behaviors?

The idea is to apply the accumulated scientific knowledge from this overview article to the stories that follow in this new series. The story of Katja Hört and her grandmother with dementia should be mentioned here. And then there are even more detailed reviews of the two books “When parents become children and yet the parents stay” by Edda Klessmann and the graphic novel “The great mess” by Sarah Leavitt.

Shared happiness: the joy of dancing with and without dementia

In all three examples, on the basis of this overview article, we will repeatedly ask ourselves what about these stories can be described as subjective and eventful and what, on the other hand, speaks for overarching patterns in the course of the disease.

At its core, it is also about moments of happiness and hope. An example of this is the graphic novel “The Great Mess”, in which Sarah Leavitt describes those moments in living together with her dementia mother that cannot be integrated into any scientific grid, such as when the daughter and her husband with the mother to the music dance of Manu Chao.

Alzheimer's and other forms of dementia

The generic term “dementia” today stands for around 50 diseases, with “dementia” being associated with a person who is “out of their mind” since ancient times.

The most famous forms:

  • Alzheimer occurs particularly in people over 65 years of age, although the risk of being affected by this disease increases with age. According to the statistics, one in three people over the age of 90 suffers from Alzheimer's. Thus, Alzheimer's is the "disease of forgetting" that occurs particularly in old age.
  • Vascular dementia is the most common form of dementia after Alzheimer's. It is very similar to Alzheimer's disease, but the symptoms are different. The focus is not on memory disorders, but on slowing down, thinking difficulties or clouding of mood. Like Alzheimer's, it mainly occurs in old age.
  • Lewy body orLewy bodies dementia is also very similar to Alzheimer's disease, which makes them difficult to distinguish from one another. It is therefore not easy to clarify to what extent mixed forms of the two dementias occur. Characteristic of Lewy body dementia are, among other things, visual hallucinations, which are often very detailed, as well as mild Parkinson’s symptoms (involuntary trembling of the hands, stiffness of movements). Like Alzheimer's, it mainly occurs in old age.
  • Frontotemporal dementia- sometimes also called “Pick's disease” - is a rather seldom form of dementia. The cause of an FTD is a loss of nerve cells in the area of ​​the frontal lobe (frontal and temporal lobes). Changes in personality and behavior are in the foreground of the symptoms. Frontotemporal dementia usually begins with behavioral disorders. In contrast to Alzheimer's, the age range of the sick is relatively large. It ranges from about 20 to 85 years.
  • Parkinson's disease dementia is characterized in the symptoms mainly by the chronic slowing down of all movement sequences, an inability to initiate new movements and a disorder of the fine motor skills (so-called “hypokinesis”). Although there is no real paralysis in the patient, the movement disorder can become so severe that the affected person appears completely motionless and rigid (so-called "akinesia"). Like Alzheimer's, it mainly occurs in old age.
  • Creutzfeldt-Jakob disease is a fatal disease of the nervous system. Patients suffer from rapidly progressing dementia, movement disorders, or muscle twitching. The risk of disease increases with age, and the peak of the disease is around the age of 70.

In all of these forms of dementia, three main areas can be characterizedthat partially overlap: First of all, we are mainly talking about the degradation of memory (for example with Alzheimer's). The second point is about changes in personality and behavior (such as frontotemporal dementia). And with regard to the third point, we are talking about movement disorders and muscle twitching that are related to nervous changes (for example in Parkinson's disease or Creutzfeldt-Jakob disease).

The diagnosis

Take, as an example, the diagnosis of the most common form of dementia: Alzheimer's disease. To date, there is no one hundred percent reliable test for diagnosing Alzheimer's disease. A 100 percent diagnosis is only possible after death using tissue samples. In order to ensure the exclusion of other diseases, the doctor or neurologist must proceed with a differential diagnosis. In addition, one can often read that cognitive disorders such as a more pronounced form of forgetfulness should be present for at least a period of six months.

The level of education also plays a role in the diagnosis. Some scientific studies come to the conclusion that a higher level of education leads to better test results and thus reduces the likelihood of a diagnosis of dementia.

The process of differential diagnosis is such that diseases that have similar symptoms are excluded. Compared to Alzheimer's, for example, symptoms such as Parkinson's, multiple sclerosis and mental illnesses such as depression should be mentioned. In the above-mentioned sound document, this differential diagnostic procedure and the problems that may arise were described in more detail using an exciting case history: "On the trail of Alzheimer's with the flair of Sherlock Holmes".

A thorough diagnosis includes the following aspects:

  • complete medical history and physical examination of the patient
  • Laboratory blood and urine tests to rule out infections and other diseases
  • Tests for the early detection of dementia (for example Mini Mental Status Test (MMST), the DemTect, test for the early detection of dementia with differentiated depressions (TFDD) and so on.

These tests can be used to make a suspected diagnosis, but patients should also be referred to a neurologist for confirmation of the diagnosis and differential diagnosis. Then further special neuropsychological tests (e.g. CERAD, ADAS-cog or SIDAM) can be carried out and a detailed neurological examination can be arranged, such as:

  • an electroencephalogram (EEG)
  • a computed tomogram (CT)
  • a magnetic resonance tomogram (MRI)
  • or positron emission tomography (PET) or single photon emission computer tomography (SPECT)

Then there are hereditary risk factors that can significantly promote the occurrence of dementia of the Alzheimer's type. This includes the ApoE4 gene and other associated genes, as examined and evaluated in a genome-wide association study of genetic data from almost 60,000 people.

The history

There are three different stages in the course of Alzheimer's dementia. The statistical average life expectancy from diagnosis to death is around 7 years (in some cases it can also be read from 8 to 9 years of age). You don't die of dementia itself, but of the consequences. An example would be death from pneumonia in the late stage, because the immune system declines, among other things, due to being bedridden and lack of movement compensation.

Symptoms in the course of Alzheimer's disease

1st stage

  • Memory disorders, especially for storing new information
  • incipient loss of orientation
  • gradual decrease in cognitive performance (also ability to concentrate)
  • often empty, empty phrases
  • Decrease in the level of activity or even aimless restlessness
  • Sometimes depressive moods or irascible, irritable behavior (especially when overwhelmed)

2nd stage

  • further progressive memory and orientation disorders
  • increasing limitation of judgment and thinking
  • Difficulty finding words, decreased ability to speak
  • decreasing ability to perform complex activities
  • Independent lifestyle no longer possible
  • often binding friendliness and controllability, sometimes fleeting deceptions (hallucinations)

3rd stage

  • Cognitive performance largely abolished
  • often greatly reduced facial expression, emotions can no longer be "read" on the face
  • frequent occurrence of neurological disorders such as urinary and fecal incontinence, gait disorders, complete immobility and bed-restraint

Behavior patterns

In accordance with the trait theory of personality, no serious changes in personality structure are to be expected in old age, with the exception of extreme or particularly formative experiences (e.g. illness, unemployment).

However, these changes must be distinguished from those developments in personality that are related to the course of a specific form of dementia such as Alzheimer's and that can be traced back to neurological disorders.

Research results from gerontopsychiatric personality research indicate that changes in the personality structure occur in the course of Alzheimer's dementia, i.e. that the dementia affects various dimensions of personality. An increase in neuroticism and a decrease in extraversion, conscientiousness, openness to experience and tolerance are registered (so-called "Big Five").

These results, as well as the definition of Alzheimer's dementia according to the international classification of the WHO (ICD-10), in which the deterioration in emotional control and disorders of social behavior and motivation are named as changes in character or behavioral problems, suggest that that in the context of a form of dementia such as Alzheimer's (depending on the stage) there is a change in personality that is strongly influenced by the disease.

There are also other so-called “challenging behaviors” that are mentioned again and again in connection with dementia: These include drive disorders, distrust and aggressiveness, fear and depression, disorders in the sleep-wake rhythm, delusions, hallucinations and lies, as well as disturbed sexual behavior .

Postpone the mental decline for years

When it comes to the question of the extent to which the mental decline in dementia such as Alzheimer's can be delayed by years, there are numerous results that differ greatly from one another in science.

Nevertheless, I would like to point out an observation and an outstanding study on this question.

The psychogerontologist Prof. Dr. Wolf D. Oswald assumes, for example, that the symptoms of Alzheimer's can be kept stable over the course of a year if detected early and acted on. This is very important, says Oswald, because people who are depressed often tend to complain about their situation, while dementia patients tend to cover up their failures.

"We cannot cure Alzheimer's, but we can delay the progression of the disease through appropriate cognitive and psychomotor therapies," explains Oswald. His observation: If Alzheimer's patients train perception, coordination and balance in the early stages, the symptoms can be kept stable for at least some time. On the other hand, in control persons without appropriate exercise units, the cognitive abilities deteriorated further.

In addition to this finding, I would like to refer to a study from Finland. The FINGER study (Finnish Geriatric Intervention Study) is the first major intervention study from 2015 that pursues a multidimensional approach to the prevention of cognitive impairment in the elderly. The Scandinavian study took part in 1,260 subjects between the ages of 60 and 77 who were already showing signs of the onset of dementia. The cognitive functions were examined at the beginning of the study and after twelve and 24 months with a detailed neuropsychological test battery.

The result of this study: It can be assumed that a balanced diet in old age, regular physical and cognitive training before and shortly after the diagnosis of dementia make a decisive contribution to delaying mental decline for years.

Further links and sources

  • Klessmann, Edda (2012): When parents become children and yet the parents remain. The double message of senile dementia. Bern: Verlag Hans Huber.
  • Leavitt, Sarah (2013): The Big Mess. Alzheimer's, my mother and me. Weinheim / Basel: Beltz Verlag.
  • Journal for Gerontology and Geriatrics (2000): “About the importance of personality traits in Alzheimer's dementia”, Link: Download Springer
  • Reinberger, Stefanie (2013): “Alzheimer's disease: Schleichend zum Vergessen”, Link: https://www.dasgehirn.info/entzüge/morbus-alzheimer/schleichend-zum-vergessen-9048/?gclid=CJTrjNf1m9MCFUefGwodiAABaw
  • Alzheimer research (2011): “New risk genes for Alzheimer's discovered”, Link: https://www.alzheimer-forschung.de/alzheimer-krankheit/aktuelles.htm?showid=3325
  • Link to the FINGER study from 2015: http://bit.ly/2njW5SU
  • See also: “Finger Research Project”, Link: https://www.thl.fi/fi/web/thlfi-en/research-and-expertwork/projects-and-programmes/finger-research-project
  • “Dementia research: mental degradation can be slowed down”: A contribution to the FINGER study in German, source: “ÄrzteZeitung” (2015), Link: http://www.aerztezeitung.de/medizin/krankheiten/demenz/?sid=881370
  • “Combining exercise, healthy eating and dementia can stop dementia”, source: “Scimondo. Fascinating things from the world of science ”(2015), Link: http://scimondo.de/4552/kombination-aus-sport-gesunder-ernaehrung-und-gehirntraining-kann-demenz-aufhalten/

Sources for the photos:

Photo: Stephan Böhling / www.flickr.com

Photo: vrot01 / www.flickr.com

Marcus Klug is currently working as a communication scientist and social media manager at the Dialog and Transfer Center Dementia (DZD), where he oversees the Knowledge Transfer 2.0 project. The project has already been awarded the 2013 Agnes Karll Care Prize. His focus is on knowledge communication in the social web. In addition, since May 2012 he has been the chief editor in charge of Digitalistbesser.org, together with Michael Lindner: Platform for change and lifelong learning. Contact: [email protected]