People with dementia experience significantly impaired memory and concentration. Over time, they find it increasingly difficult to cope independently with daily life. The most common form of dementia is Alzheimer’s disease.
At a glance
- Alzheimer’s disease is the most common cause of dementia.
- The quality of life of a person with dementia can be improved with non-pharmaceutical treatments.
- There is as yet no known treatment to cure or halt the progression of Alzheimer’s disease.
- The risk of developing Alzheimer’s disease increases with age (from around 65 years old).
- Many people receive support and understanding if they are frank and open about their disease.
Note: The information in this article cannot and should not replace a medical consultation and must not be used for self-diagnosis or treatment.
What is Alzheimer’s disease?
Dementia involves a progressive loss of important brain functions. Memory and concentration are usually affected first. People with dementia find it increasingly difficult to cope and to lead an independent life.
The most common cause of dementia is Alzheimer’s disease (also known – less commonly – as Alzheimer dementia). The disease is named after Dr. Alois Alzheimer, a psychiatrist who first described it at the beginning of the twentieth century.
Important: The progression of Alzheimer’s disease can be positively influenced by means of various medications and other, non-pharmaceutical treatments. However, there is as yet no known treatment to cure or halt the progression of Alzheimer’s disease.
What symptoms occur with Alzheimer’s disease?
Most people experience a deterioration in memory and learning ability as part of the aging process. It is normal for older people to find it more difficult to adjust to new circumstances and situations. However, the capacity to access acquired knowledge is retained. Normally, older people are still oriented (aware of time and place), independent, and capable of making their own decisions and judgments.
However, this is not the case if a person has Alzheimer’s disease, in which cognitive functioning deteriorates progressively over time. The first sign is usually impaired short-term memory. Those affected forget what has just happened but can still recall events that occurred in the distant past. Over time, however, long-term memory also becomes impaired.
Many people with dementia also display changes in behavior at some point. Their personality may also change. They may become more anxious, reserved, passive, distrustful, or even aggressive.
What can cause Alzheimer’s disease?
The precise causes of Alzheimer’s disease remain largely unknown. It is very likely that the disease has multiple causes.
With dementia, increasing numbers of brain cells die as the disease progresses. However, it is not yet understood exactly why this happens. Research has determined that the brains of people with Alzheimer’s disease are deficient in acetylcholine – an important neurotransmitter.
It has also been discovered that small proteins are deposited in the brains of people with Alzheimer’s disease. These deposits may be the reason for increasing brain cell death.
What is dementia?
This video explains what causes dementia and how it can be treated.
This and other videos can also be found on YouTube.Watch now
What are the risk factors for Alzheimer’s disease?
The likelihood of developing Alzheimer’s disease increases with age (in those aged around 65 and older). Many studies have investigated a possible link between certain other diseases, behaviors, and lifestyle factors and the risk of developing dementia. While research has yet to produce any clear answers, it does point towards the following possible factors of influence:
Genetic predisposition is also discussed as a possible factor. To date, a small number of genes have been identified that influence the risk of developing Alzheimer’s disease. In some families, for example, Alzheimer’s disease can affect multiple family members, with symptoms beginning in middle age. Special genetic testing can determine whether these individuals have pre-senile Alzheimer’s disease. If they do, their siblings and children are at an increased risk of developing the disease.
Other genetic anomalies are also frequently implicated in the development of Alzheimer’s disease. However, it is not possible to use these genetic characteristics as reliable predictors of whether a person will actually develop the disease.
How many people have dementia?
Around 1.6 million people in Germany have dementia. More women than men are affected, which is likely due to their longer life expectancy, because most cases of dementia begin at an advanced age. In the 65 to 69 cohort, approximately 2 percent are affected, while this figure rises to around 10 percent among those in the 80 to 84 age group. It is estimated that 70 percent of those with dementia have Alzheimer's disease.
How does Alzheimer’s disease progress?
The first symptoms of Alzheimer’s disease usually begin after the age of 65. Alzheimer's disease is a chronic disease that becomes progressively worse over several years.
Early-stage Alzheimer’s disease
- In its earliest stages, it is often difficult to distinguish between Alzheimer’s disease and the normal forgetfulness that comes with age.
- People find it more difficult to live their lives completely independently.
- More complex daily tasks may present a major challenge.
- Increasing forgetfulness may lead to feelings of anxiety, stress, aggression, and shame.
- Some people experience depression and are frequently irritable.
Middle-stage Alzheimer’s disease
- Those affected can no longer live independently.
- While they can still feed themselves, take care of their own personal hygiene, and complete simple household tasks, they need to be reminded to do so.
- More complex tasks, such as shopping, cooking, cleaning, or going for a walk, are only possible with support from others.
- Overall, individuals in this stage of the disease are at an increased risk of getting lost and being unable to find their way home and of causing harm to themselves or others by forgetting to switch off appliances like the oven or iron.
- Their day/night (sleep/wake) cycle is frequently also disturbed.
- Speech comprehension and production is impaired.
- Individuals find it increasingly difficult to distinguish between the past and present.
Late-stage Alzheimer’s disease
- Continuous support from others is needed during this stage of the disease.
- Difficulties with speech and comprehension may be so severe that conversation becomes virtually impossible.
- The simplest of tasks can no longer be completed independently, and assistance with eating and drinking is required.
- Often, people in an advanced stage of dementia no longer recognize those closest to them. They are frequently fretful, experience hallucinations, or confuse past and present events.
- Control of bodily functions may also be lost.
How is Alzheimer’s disease diagnosed?
Alzheimer’s disease cannot be detected with complete certainty by means of the currently available tests and screening procedures – such as computerized brain tomography or special laboratory blood tests.
Comprehensive diagnostics are therefore required to confirm or rule out a suspected case of dementia. The first point of contact is usually the family doctor. Further diagnosis usually involves a multi-disciplinary team of specialists – primarily from the fields of neurology, psychiatry, and radiology.
A reliable diagnosis also requires that other diseases be considered as potential triggers of the symptoms presented. After all, symptoms such as increasing forgetfulness, orientation problems, and behavioral changes may have very different causes. Alzheimer’s disease can only be diagnosed if the symptoms have been present for more than six months and if other triggers are unlikely.
How can Alzheimer’s disease be treated?
People with Alzheimer’s disease require long-term treatment and support. Depending on their individual needs, specific life situation, and the stage of the disease, they may require a care team comprising specialists from the fields of medicine, psychology, nursing, and social work.
Family support is usually also a key component of their care. Volunteers may provide additional support.
Medication and other forms of treatment for Alzheimer's disease seek to:
- preserve independence and the ability to cope with daily life for as long as possible
- alleviate psychological symptoms
- improve overall quality of life
- lighten the daily burden on relatives
Apart from medication, treatment options for dementia include:
- memory and orientation exercises
- daily group activities
- art therapy, aroma therapy, animal therapy, music therapy
- physical activities
- training for relatives
The most common medications include:
- cholinesterase inhibitors
- extracts from the leaves of the Ginkgo tree
Important: A cure has not yet been discovered for Alzheimer’s disease. Various medications are available for mild to moderate stages of the disease, which serve to delay the degeneration of cognitive functions to some extent. These drugs may also have side-effects. It is unclear which medication is most effective in treating dementia.
For more detailed information about Alzheimer’s disease, e.g., about non-pharmaceutical treatments, visit gesundeitsinformation.de.
What is everyday life like for people with Alzheimer’s disease?
The experience of dementia varies widely between individuals. Some manage to accept their disease and to lead an active, contented life for as long as possible. Others feel defeated, becoming depressed and increasingly withdrawn. Yet others try to suppress their disease and its symptoms as far as possible.
Many people with dementia have a positive experience if they are open and honest with themselves and others about their situation. Once they do so, their family in particular, but also their friends and acquaintances, have the opportunity to offer support and provide assistance in various ways.
These supports become increasingly important as dementia progresses and permanently changes daily life for those affected and their loved ones. It becomes more difficult to participate in group activities and hobbies. There is a shift in roles and responsibilities. Conflicts within families and couples may increase. Care and nursing requirements may present such a major challenge to relatives that they themselves need some support.
Sharing experiences with other people (e.g., in a support group) is often valuable and beneficial. It is also important to remain as active as possible and to pursue hobbies like walking, crafting, cooking, or singing for as long as possible – many things can still be achieved with Alzheimer’s disease.
See gesundheitsinformation.de for personal stories, including insights from sufferers of Alzheimer’s disease, as well as from children whose mothers are affected.
Where can I find more information about Alzheimer’s disease?
Individuals with dementia will lose their independence at some point as the disease progresses. They increasingly need other people to help care for them. At some point, they will also lose the ability to make important decisions by themselves.
It is therefore important, in the early stages of the disease, to learn about what can be expected in the future and to make appropriate arrangements in advance. A Lasting Power of Attorney (LPA) or a guardianship directive can be used to specify who is to be responsible for care of the patient and for making decisions on the patient’s behalf later on. Specific conditions can also be stipulated, which must be met in order for the LPA to come into effect. A living will can in addition specify whether and which life-sustaining measures are to be taken if the person becomes severely ill.
You can download the official form for Lasting Power of Attorney for Health and Welfare (“Vorsorgevollmacht”; in German) from the website of the Federal Ministry of Justice and Consumer Protection.
As dementia progresses, psychosocial support, nursing care, and the provision of relief for care-giving relatives become increasingly important. Local services may be able to help with the first step in getting the support that is needed, e.g., facilities providing day-time care or hourly care for dementia patients, training courses in caring for those with the disease, or discussion groups for relatives. The main caregiver is also entitled to request short-term respite care if they themselves become ill or need some time off.
In addition, the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth offers extensive information, as well as the addresses of advice and support services, on its dementia information portal “Wegweiser Demenz” (in German).
The website of the Federal Ministry of Health also provides information about nursing and respite care for family members in its online guide to statutory nursing care insurance.
The website of the German Alzheimer Association provides helpful background information about the disease, as well as valuable information for those affected and their relatives.
- Alzheimer Research Forum (ARF). AlzGene – Field Synopsis of Genetic Association Studies in AD. Aufgerufen am 03.05.2020.
- Alzheimer Research Forum (ARF). AlzRisk AD Epidemiology Database. Aufgerufen am 03.05.2020.
- Ballard C, Gauthier S, Corbett A, Brayne C, Aarsland D, Jones E. Alzheimer's disease. Lancet 2011; 377(9770): 1019-1031. Aufgerufen am 13.05.2020.
- Bunn F, Goodman C, Sworn K, Rait G, Brayne C, Robinson L et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Med 2012; 9(10): e1001331. Aufgerufen am 13.05.2020.
- Deutsche Gesellschaft für Allgemeinmedizin und Familienmedizin (DEGAM). Demenz. Düsseldorf: DEGAM; 2008. (DEGAM-Leitlinien; Band 12).
- Deutsche Gesellschaft für Psychiatrie und Psychotherapie, Psychosomatik und Nervenheilkunde (DGPPN) und Deutsche Gesellschaft für Neurologie (DGN) in Zusammenarbeit mit der Deutschen Alzheimer Gesellschaft e.V. – Selbsthilfe Demenz. Demenzen. S3-Leitlinie. AWMF-Registernummer 038 – 013. 01.2016. Aufgerufen am 13.05.2020.
- Finckh U. Genetische Faktoren bei Alzheimer-Demenz. Deutsches Ärzteblatt 2006; 103(15): A1010-A1016. Aufgerufen am 13.05.2020.
- Hirschman KB, Joyce CM, James BD, Xie SX, Karlawish JH. Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them? Gerontologist 2005; 45(3): 381-388. Aufgerufen am 13.05.2020.
- Kane RL, Butler M, Fink H, Brasure M, Davila H, Desai P et al. Interventions To Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia. AHRQ Comparative Effectiveness Reviews; Band 188. AHRQ: Rockville 2017. Aufgerufen am 13.05.2020.
- Ohman A, Josephsson S, Nygard L. Awareness through interaction in everyday occupations: experiences of people with Alzheimer's disease. Scand J Occup Ther 2008; 15(1): 43-51. Aufgerufen am 13.05.2020.
- Phinney A, Moody EM. Leisure connections: benefits and challenges of participating in a social recreation group for people with early dementia. Activities, Adaptation & Aging 2011; 35(2): 111-130. Aufgerufen am 13.05.2020.
- Robert Koch-Institut (RKI). Altersdemenz. Gesundheitsberichterstattung des Bundes. Heft 28. 11.2005. Aufgerufen am 13.05.2020.
- Stechl E, Lammler G, Steinhagen-Thiessen E, Flick U. Subjektive Wahrnehmung und Bewältigung der Demenz im Frühstadium - SUWADEM: Eine qualitative Interviewstudie mit Betroffenen und Angehörigen. Z Gerontol Geriatr 2007; 40(2): 71-80. Aufgerufen am 13.05.2020.
In cooperation with the Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen – IQWiG). As at: