Dementia: if only we had known that sooner

‘Rather dead than demented,’ my mother always said when she came home after visiting her eldest sister, who suffered from Alzheimer’s. The loss of control, the humiliating end in a nursing home: she didn’t want to experience that. Did she realize then that her memory was failing her more and more? Gradually, she began to notice that she was telling the same story three times in one hour. That she became increasingly insecure and canceled visits to friends. That she forgot to get something sweet when we came to visit.

One day I found her crying in the kitchen: a smoking pan of black potatoes sat on the stove and the otherwise clean countertop had turned into chaos. For my father and our children it was clear: this was not normal. But she herself denied that anything was wrong. To the doctor? “No, I’m fine.” She didn’t want to hear the word Alzheimer’s. It was often heartbreaking to see how she tried with all her might to keep control, but had to give up more and more. And how my father and mother grew apart. Because of the consequences of the disease, but also because they could not share the pain.

Enjoy while you still can
It can also be different. For Cor Jacobi (64), director of an insurance office in Montfoort, there is no taboo on dementia. He was diagnosed with Alzheimer’s a year ago. “I ran the same print job three times at the office. I forgot appointments and saw double in the evening. My wife thought I behaved strangely at times.” The diagnosis hit like a sledgehammer, but Jacobi decided not to make a secret of it. “Some people warned: ‘Don’t say it, because then you will lose friends’. But they responded very well, just like the employees at the office. They had known for a long time that something was wrong with me. and I don’t go to new customers anymore. That’s hard, but this way I can continue working until I retire.”

Bridgen is no longer possible, but tennis and billiards are. “’We don’t notice you at all’, my billiard friends say.” He knows all too well that the disease is irreversible and is becoming increasingly serious. “I’d rather not think about that. I try to enjoy it with my wife.” Softly: “As long as you can. We don’t talk about it constantly, but we know that a lot is going to change for both of us.” Get used to the situation
Professor of neurology Philip Scheltens, head of the Alzheimer’s Center at VU University Amsterdam, has to tell twelve patients every week that they suffer from a form of dementia. “That’s not nice, but most people are also a little relieved when they hear a clear diagnosis. There are very few who are really scared. That certainly applies to partners. Usually there are so many warning signs that they already suspect that something is seriously wrong.

Once there is clarity, they can adjust to the disease and take precautions.” Gea Broekema, General Director of Alzheimer Nederland, calls this “the benefit of knowing”. “If you know what awaits you, you can give it a place in your life.” Patients who can talk about their illness with their partner, family and friends are less likely to become isolated. Contact with fellow sufferers can also provide a lot of support.

At least as important is that the partner is given time to get used to the situation. Broekema: “You see your partner slowly turning into a patient. That takes an incredible amount. You are grieving and at the same time have to switch to the role of caregiver. It is important to organize support from your environment and to call in auxiliary troops in time.” That is why Alzheimer Nederland is launching a public campaign this autumn that should encourage people to go to the doctor earlier if they suspect dementia.

Early diagnosis is important
Not everyone reacts as understandingly as Cor Jacobi. Edwin Hegele’s father was diagnosed with Alzheimer’s a year and a half ago. He’s still mad at the neurologist. “He is running backwards, but he thinks he could still have driven a car if we hadn’t taken him to the doctor.” “The denial of the complaints is part of the disease,” says Scheltens. “The further the disease process, the less self-awareness. That is why it is so important to make the diagnosis early.”
In half of the dementia patients, the diagnosis is not made or is made much too late. This is not only due to fear and denial among patients, but also to reticence on the part of general practitioners. “I see more excuses from the GP than from the patients,” says Scheltens. “I’ve always been hesitant to bring up the subject if patients didn’t come up with it themselves,” says Nieuwegein GP Job Nievaart. “Especially because I had nothing to offer patients.” Now that there are drugs that can sometimes slow down the dementia process, he thinks differently. “I don’t want to be the famous gentle healer. But it remains difficult. You run the risk of insulting patients and jeopardizing the relationship of trust.” Scheltens: “Colder. The relationship of trust is disrupted if you ignore complaints.”

Recognizing the Symptoms
When does it make sense to see a doctor? “The main warning signs are behavioral change and forgetfulness,” says Scheltens. A little forgetfulness is normal as you get older. If you can’t remember exactly who was at your birthday party, don’t worry. If you forget that he celebrated his birthday, you should. Even if your environment notices that you forget important appointments, forget to turn off the gas, or can no longer find your way, it is good to go to the doctor. Falls, sudden loss of strength in arms or legs, double vision and difficulty speaking can also be symptoms of dementia. In addition, sadness, lack of interest and agitation can be reasons to think of dementia.

According to Scheltens, it can be determined with ninety percent certainty at an early stage whether there is dementia and what form it is. This is done in one of the more than forty memory outpatient clinics or three Alzheimer’s centers in the Netherlands. They do neurological examinations, psychological tests, brain scans and examine cerebrospinal fluid. There is not yet a remedy that cures the patient and restores the brain to its former state. However, there are medicines – so-called cholinesterase inhibitors – that can ensure that the complaints do not get worse. Scheltens: “These medicines only work in an early stage of the disease. They do not catch on with everyone and after a few months to three years at the most they wear off. Ultimately, the disease catches up with the drug.” Insight into the progress
And then? Waiting quietly for ‘the ghost to sail into the darkness’, as the English writer and Alzheimer’s patient Iris Murdoch described it? Scheltens sighs: “The end is certain, but what happens before that is completely different for every patient. One dies within two years, the other remains stable for ten years. Still others are gradually deteriorating.” When they think of dementia, almost everyone thinks of a deteriorating old person in a nursing home.
Scheltens: “It would make such a difference if people adjust that image. Five percent of people with dementia are younger than 65 when the symptoms start. More than seventy percent live at home and most people can function quite well for years to come.” The earlier dementia strikes, the more aggressive and the earlier patients die.

Forms dementia
The form of dementia also makes a difference. In people with vascular dementia – about 15 percent of people with dementia – the blood vessels in the brain are damaged, causing brain tissue to die. They become slower and often have trouble retrieving things in memory, but the memory itself remains intact for longer than in patients with Alzheimer’s disease. They are also more aware of their disease than Alzheimer’s patients. In Alzheimer’s disease, the nerve cells in the brain no longer work properly. Sixty to seventy percent of people with dementia suffer from this form of dementia.

Individual differences
But there are also big individual differences. Scheltens: “By actively following people, we gain insight into the course of their illness.’ That is why he sees his patients every six months. In the meantime, they can contact specialized nurses at the Alzheimer’s Center with questions. Scheltens: “It helps enormously if people know in which direction things are going and which complaints they may have to deal with.”

Unfortunately, there are also many people with dementia who are told by their doctor: “Go home, I can’t do anything for you.” Scheltens: “It is your duty to continue to follow patients with dementia.” My mother never knew exactly how her disease would develop because of her denial. Too bad, because maybe it would have helped her if she had been diagnosed with Alzheimer’s before she lost control of her life. Maybe she had handled the disaster differently and felt less lonely. It certainly would have made a difference to my father if he could have shared his concerns and prepared earlier. The end had been just as tough, but the road there might have been more passable.

For more information about the importance of early recognition of dementia and a test, go to: http://www.herkendementie.nu/