Lack of Supply for Older People with Down Syndrome

01/01/2008

Doctors often don´t know enough
about elderly with Down's
Syndrome; © Flury/Pixelio.de

Every day Cora Halder‘s phone rings. She is manageress of the German Down syndrome Info Centre. Affected people ask her for help for they do not know who they can address to for medical advice. “They go from one physician to the other - they can help in the minority of all cases”, Halder explains. And the older people with Down syndrome are the more difficult it is finding a specialist who knows about the medical problems.

People with Down syndrome reach an average age of 60 years; 30 years ago most of them already died as teenagers. Medical supply has improved, frequently appearing organ damages like congenital heart defects can be operated today.

However: „At the age between 40 and 50 years 10 percent of people with the syndrome suffer from dementia; at the age of 50 years already half of the affected people and with 70 years even 99 percent”, explains Dr Antonia Felchner, “first since 15 years it is noted that they have dementia.” The doctor works in the integrated medical service in the institution Neuerkerode, Germany. A village where 800 learning disabled people live. 72 of them have Down syndrome. There Felchner notices that “the sequels are quite different and heavier than in demented people without disability.”

In many cases the affected ones get epilepsy. Furthermore there are heavy dysphasias which can lead to the situation that food has to be assimilated through a feeding tube. “Without tube they could choke over their food and this often leads to lung inflammations. All these illnesses can be fatal without being recognized”, says Felchner. Another sequel: the “Pseudo-parkinson’s disease syndrome”. People with this syndrome are not able to go or stand any longer and need a wheelchair which is often accompanied by urinary or anal incontinence.

Due to the fact that physicians often do not recognise these symptoms as dementia sequels there is a lack of supply for older people with Down syndrome. “Physicians do not often get in contact with patients who suffer from this disease. That is why they are not able to see the connections”, explains Felchner, “only those doctors are specialists who often deal with mentally handicapped patients, as for example in institutions. In other countries supply is different. In England or the Netherlands there are medical specialists for mentally handicapped people.” In Germany there is no further education. With the aim to give physicians some help, Felchner and colleagues developed a bill of health for adults with Down syndrome.

Felchner disbelieves that there will soon be a solution for the gap in Germany. Until that time it will stay kind of luck if and where people with Down syndrome and dementia receive appropriate care.

REHACARE.de

- More on the German Down Syndrome Infocentre at: www.ds-infocenter.de