In mourning for your young demented wife
Suffering from Alzheimer at 40? It does happen. A new Alzheimer Centre at the Free University in Amsterdam is focusing on dementia in under-65s.
One such patient is 62-year-old Agnes van Middelaar. Her husband Piet told RNW that she is suffering from semantic dementia, a rare form of the disease which particularly affects younger sufferers. Patients like Agnes gradually lose all understanding of language. "When you lose your language, there are so many things that you can no longer share. It gives rise to every possible feeling of mourning and pain," according to Piet van Middelaar.
The Alzheimer Centre is part of the Amsterdam Free University's academic hospital, and it has a staff of about 50 researchers and clinical personnel. It was officially opened on Tuesday by Queen Beatrix.
Professor Philip Scheltens, head of the centre, outlines the way they work: "Each patient who crosses the threshold of this new centre is aware that they are research subjects. That is a unique approach which I rarely found elsewhere in the world. Other than that, our main strength is our collaboration with other such centres at a global level. It's only through large-scale co-operation that science can progress."
Research at the centre is aimed at uncovering the causes of dementia and enabling earlier diagnoses of the disease. Many doctors apparently fail to recognise dementia in younger patients.
Hence the unusual focus of the Amsterdam researchers on relatively young dementia sufferers, aged between 35 and 65, in addition to the usual, older group. They are involved both as research subjects and as patients who receive treatment.
In the younger group, the impact on the sufferers' surroundings is huge. They cease to function at work and in their families, and their social lives are disrupted. The disease is ultimately fatal for the patients themselves. Medication exists to make the affliction bearable, but there is no cure, or even a delay, once dementia has set in.
As Professor Scheltens explains, "The disease appears to be more aggressive and to develop faster in younger patients." The life expectation of people who contract Alzheimer when aged between 35 and 40 is a mere 5 to 6 years. Older dementia patients have a life expectation of up to 15 years.
Worldwide there are approximately 35 million dementia sufferers, and estimates show an increase to 115 million in 2050. The majority is found in the Western world, where the number of patients has risen by 46 percent between 2000 and 2007. The picture is shifting, however.
According to Professor Scheltens, "The main rise is in those countries where the economy has developed rapidly, such as India and China. There, people's lifespan is extending, but Alzheimer is increasing as well. It is our impression that the risk factors of a Western lifestyle, such as high blood pressure, cholesterol levels, lack of exercise, and obesity, are contributing to the onset of Alzheimer."
Dementia, of which Alzheimer's disease is the best-known instance, reveals itself only slowly. Agnes van Middelaar used to be a nurse. About ten years ago she was diagnosed with dementia, but the signs were evident years before.
Her husband Piet says, "She never grasped the shattering diagnosis. The loss is gradual. 'Oh, I forgot.' 'Oh, what was that called again?' And she used to find it troublesome. But she never descended into aggression or depression, as some sufferers do. I know of some dementia sufferers who are impossible to live with. I was fortunate, in that respect," Piet van Middelaar said.
Agnes was admitted to a care home, as most dementia patients are. Her own private room there is a safe environment for her. She can no longer speak and shows no understanding of anything. Agnes no longer recognises her husband Piet, nor her two sons.