Can young people get Alzheimer's

From: Alzheimer Info 1/18

Young sick people - dementia under 65 years of age

My husband seemed more and more unfocused. When he finally forgot to congratulate me on my birthday, I sent him to see a psychiatrist. He diagnosed Alzheimer's disease in the early stages - at the age of 54! Now he can no longer work and our whole life is turned upside down. "

Dementia diseases rarely occur under the age of 65. In total, however, around 24,000 people in Germany are affected. Dementia in younger people does not differ fundamentally from that in older people, but it does pose very special challenges for those affected and their families. This begins with the diagnosis: even medical professionals usually do not think of dementia when people of working age complain about memory problems or poor concentration. Therefore, they usually initially suspect depression or burnout as the cause of the impairment in performance or behavioral changes that their patients describe. Often those affected report that they had to undertake a true odyssey to get the final diagnosis. On average, the odyssey lasts two to three years. Compared to older people, younger sufferers are often diagnosed at an earlier stage of the disease because problems in the workplace become noticeable early on and these cannot be explained by “forgetting old age”.

An early diagnosis offers opportunities for those affected

An early diagnosis offers those affected the chance to consciously shape life with the disease and to make self-determined provisions for the future. Of course, this also applies to older people who suffer from dementia! Younger dementia sufferers can often fall back on greater resources than older ones: on the one hand, they are usually still very physically fit, on the other hand, they are often familiar with the use of modern technology and can, for example, use smartphone reminders.

In recent years, mostly younger people with the onset of dementia have come out into the public more and more often to report on their illness and to express their wishes and needs. They formulate how important it is for them, for example, to continue to be able to contribute in a variety of ways beyond their diagnosis and to receive recognition for their achievements. And they are demanding offers of support in order to be able to continue their lives as normally as possible despite their limitations. In many places groups have already been set up by and for people with the onset of dementia. The advisory board “Living with Dementia”, a working group of people with dementia, advises the board of the German Alzheimer's Society in its work. There are similar working groups at European level and worldwide (Dementia Alliance International).

Leaving the job brings financial problems

In some cases, despite illness, it is still possible to work for a while, possibly with reduced requirements and working hours. If this is not possible or if those affected do not want to expose themselves to the stress associated with it, the premature exit from work often entails major financial losses. If there are additional financial obligations such as a home loan, the situation for the families can become very difficult. For the healthy partner, this means that he or she is primarily responsible for the family income and cannot, for example, reduce working hours in order to be there for the sick person.

The roles within the family are changing

When certain skills are slowly lost as a result of dementia, this gradually changes roles within a family. It is often painful for relatives to experience that the person concerned increasingly loses skills. Taking responsibility for decisions alone or even having to make decisions against the express will of the partner is not easy. But it is also difficult for those affected to experience that they can no longer take on tasks as they used to and are increasingly dependent on others. Expectations, tasks and responsibilities within the family have to be redefined and reorganized. It is important to think carefully about the things that the sick person can continue to take on or take on for the first time - even if this may take a little more time than before.

Often the children still live at home

Underage children often still live in the affected families. For them, depending on their age, it is particularly difficult to understand and accept what happens when a parent suffers from dementia. In order to support them, it is important to be open about the disease and to answer the children's questions. Some children and adolescents react with resistance or fear of contact, while others deal with the disease more impartially and want to help. Children should be protected from behavioral changes caused by illness, such as unjustified accusations or abusive behavior by the sick parent. But there is nothing to prevent them from being included to a certain extent in the new division of responsibilities within the family. This gives them the feeling that they can do something to cope with the difficult situation. However, it is important to avoid overburdening the children.

Special features from a medical point of view

From a medical point of view, there are also some peculiarities with dementia in younger age: On the one hand, the proportion of rare dementias in the group of younger people is significantly higher than in the older group. While Alzheimer's disease is responsible for up to two thirds of dementias in old age, it only plays a role in around a third of younger people. In second place are frontotemporal degenerations, then circulation-related dementias, Lewy body disease and a variety of rare neurological diseases or infectious diseases of the brain. Hereditary forms of dementia, in which altered genes are passed on to the offspring, also play a much greater role in dementia in younger people. However, in most cases it is not a hereditary form, even in younger patients.

Another special feature is that the appearance of dementia in younger people is often atypical. For example, with the “frontal variant” of Alzheimer's disease, changes in behavior and in dealing with other people initially occur, while memory is not impaired. In the case of the language-accentuated variant, word-finding disorders and a slowdown in speaking are in the foreground. And a third unusual variant causes difficulties with vision. These atypical symptoms also often require extensive diagnostics by a specialist.

Lack of suitable support offers

So far, there have been very few advice and support services specifically aimed at younger people with dementia and their relatives. Younger people affected usually need more exercise and are interested in other topics and styles of music than people who are twenty to thirty years older than them. That is why projects such as a day care facility for younger dementia patients, which is currently being planned in Hamburg, are very welcome. A sufficiently large number of those affected for such an offer can only be found in metropolitan areas. In most regions, the families affected are still dependent on care and support facilities being open to responding to the individual needs of the sick.

Susanne Saxl
German Alzheimer's Society