As an international conference on Alzheimer kicks off in Philadelphia, Germans are still struggling to figure out how to deal with the problem: Most nursing homes are still ill-equipped to respond to patients needs.
Alzheimer patients are often shunned by society
Inge Meysel and Harald Juhnke are two household names here in Germany, stars of stage and TV whose careers spanned many decades. Both also fell victim to senile dementia, their bright, quirky personalities gradually but inexorably fading away.
Inge Meysel in 2001
Inge Meysel (photo) died a few days ago; Harald Juhnke is now in a nursing home. Their fate has confronted the German public with the reality of an illness that most people would prefer to ignore, even though the number of sufferers of the most common form of dementia, Alzheimer, is growing rapidly.
There are now over a million sufferers in Germany, with an additional two hundred thousand every year. In the race to find preventive medicines and perhaps even a cure, international experts are now meeting in Philadelphia. In Germany, meanwhile, many Alzheimer patients end their lives in nursing homes, with widely differing standards of care.
Not enough time for patients
Harald Juhnke in 1997
Harald Juhnke, whose alcoholism made his career a roller coaster of disasters and recoveries so frequent he seemed indestructible, now lives in a nursing home, mostly unaware of his surroundings. He's treated just like any other patient with no special privileges.
That means his day is a lot like Elke Schmidt (name changed), who wasn't washed properly this morning. One of the staff was sick and the others had too much to do. Her hair hasn't been brushed either, which is a pity as that's something she always enjoys, the gentle stroking of the comb through her hair and -- if she's lucky -- someone who'll have a friendly chat with her.
But that's the exception: Generally the staff talk to each other as they carry out their duties, maybe sorting out the shift plan for next week or deciding who'll take Mrs. Schmidt to the lavatory later on.
Actress Inge Meysel was spared that as she was able to live in her own home until the end, except for a brief spell in the hospital. The last TV pictures from her birthday in May show a little old lady in a wheelchair smiling uncertainly, not understanding what's going on or why she's being presented with flowers by people who, to her, are strangers.
Alzheimer patients often suffer from loss of human contact.
In most nursing homes, there is little sign of the human contact that is so important for Alzheimer patients; a friendly word, an embrace, the assurance that "it doesn't matter" if something is spilled or knocked over, someone to go for a walk with. Too few staff, too little time -- that's why Mrs. Schmidt is often back in bed at 8 p.m., although she may not be at all tired -- but there's always a sleeping pill to help.
Taking a different approach
In the state-run home for the elderly and infirm in Riehl, a suburb of Cologne, carrying for Alzheimer patients is going to change. There'll be a cafe open until late at night for those who are still wide awake. There are different forms of accommodation -- ranging from minimum supervision for mild cases to round-the clock care -- and regular staff training to keep up with the latest medical advances.
"The center is important because, as a result of demographic development, there are more and more elderly dementia sufferers, but there aren't enough suitable places for them," said Otto Ludorff, who directs the center.
Other European countries have already gone further. Holland, for example, has for years been able to offer a better quality of care more tailored to the needs of individual dementia sufferers. Why has it taken so long in Germany?
"It's a social problem," Ludorff said. "Here in Germany we don't seem to have realized that more should be done for dementia patients. I think we need to focus more on the question: What value does an elderly person have in our society? Up to now that's been largely ignored."
Often it's lack of money that causes healthcare plans to fail. Caring for dementia patients is a round-the-clock task and requires a staff with time on their hands.
Although the Riehl team will not be getting any extra funds or staff for their new center, motivation is high. But it wouldn't be possible without the 200 voluntary helpers, every one of whom will be needed
Changing societal attitudes
Hans-Joachim Schirmer is an expert on Alzheimer and works as a doctor at the Riehl center. Once a week people with relatives suffering from the disease -- many of them at their wits' end -- can consult him for free to find out what care possibilities are available.
Senior citizens in the Netherlands enjoy some of the best nursing care in Europe.
There may not be any sign of a cure in sight but Schirmer is optimistic "that it is possible to help people suffering from this terrible illness, so that their families don't lie awake at night wondering how to cope. That we can do, with the means now at our disposal." But if the situation is really to change for the better, for sufferers and their families many of whom try to keep their relatives out of a nursing home for as long as possible, often exhausting themselves with the double burden of caring for their parents while also carrying on with their own job or taking care of children, then society as a whole has to rethink its approach to the elderly and how important it is to help them and their families prepare for death with dignity.