One in five people develops dementia

How do you recognize this disease and what are the treatment options?

Forgetful or demented

Everyone is forgetful sometimes, they can temporarily not remember something. Dementia is less harmless. People with dementia no longer have access to certain information in the brain.

Forgetting where the keys are, not being able to recall someone’s name, walking up the stairs, and not remembering why you had to go upstairs: everyone is forgetful sometimes. Forgetfulness is a normal memory complaint and little can be done about it. It can be annoying at times, but once the answer comes to mind, the problem is solved. In short, forgetfulness does not have a major impact on our daily life.

None vs. much influence on daily life

This is very different from dementia. The answer no longer comes to mind in people with dementia. Someone with advanced dementia can no longer name an acquaintance and no longer even recognize them. All this kind of information disappears from the memory or is no longer accessible to the patient. Dementia has a major impact on the patient’s daily life. The household, the finances, going for a walk independently; it is getting more and more difficult.

People with dementia not only forget knowledge but also skills they have learned before. From large, complicated matters, to everyday things such as making a sandwich. Such matters disappear or can no longer be recalled.

Are you concerned about your memory or someone else’s memory? Then take the memory test that Alzheimer Nederland developed. Obviously, the test does not diagnose, but it does give an indication of possible memory deterioration. You decide for yourself whether the results warrant a visit to the doctor. You can find the test on www.geheugentest.nl.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Causes of dementia

There are several causes of dementia. Alzheimer’s disease is the most common cause. Less known are vascular, frontotemporal dementia, and Dementia with Lewy-Bodies.

Alzheimer’s disease

Alzheimer’s disease is the most common cause of dementia, more than 70% of dementia cases are Alzheimer’s disease. Plenty of research is being done into this disease. For now, we know, among other things, that Alzheimer’s disease is most likely caused by an accumulation of harmful proteins (Amyloid-beta and Tau) between (Amyloid-beta) and in (Tau) the nerve cells of the brain. These proteins are not broken down properly and impede the function of the nerve cells. The brain can no longer function properly, causing the nerve cells to die. That process is irreversible, as dead nerve cells never become healthy, working nerve cells again. Memory problems are often at the forefront of patients with Alzheimer’s disease.

Vascular dementia

Another form of dementia is vascular dementia. Vascular means “relating to the blood vessels”. Vascular dementia is caused by damage to the brain from problems with the blood vessels of the brain. For example, people who have had a cerebral infarction or cerebral hemorrhage can develop thinking disorders as a result of damage to the brain. But the damage to the small blood vessels of the brain, visible as lacunar infarcts or white matter abnormalities, can also be associated with thinking problems. In vascular dementia, slowness of thinking, speaking, and acting is often at the forefront.

Frontotemporal dementia

Frontotemporal dementia is caused by damage to the frontal and/or temporal lobe of the brain. These areas of the brain are responsible for our decision-making and coordination, and for our emotional responses and language skills. People with frontotemporal dementia therefore mainly suffer from changes in behavior and personality and experience language disorders and problems with the regulation of emotions. There are several abnormal proteins that can be responsible for brain lobe damage.

Lewy-Body Dementia

In dementia with Lewy-Bodies, accumulations of the protein alpha-synuclein are found in the brain cells. These accumulations are called Lewy-Bodies. The degree of complaints experienced by people with dementia with Lewy-Bodies can vary from moment to moment. In addition to thinking disorders, visual hallucinations and Parkinson’s-like symptoms (tremors, slow movement, and stiffness) occur in this form.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Diagnosis

Dementia is diagnosed after a number of tests. The doctor asks the patient and the partner for complaints, carries out an examination in the doctor’s office, neuropsychological tests, an MRI scan of the brain and in some cases, the cerebrospinal fluid obtained via an epidural is also examined in the laboratory.

First, the GP

Diagnosing dementia is not easy, many tests are needed to make the diagnosis. Most patients first go to the doctor. This person asks the patient question and people in the immediate surroundings and performs blood and urine tests to rule out other things (for example, incorrect use of medication or depression). Through these conversations and examinations, the GP can get a good picture of the situation. The doctor can then refer the patient to a specialist or decide that it is better to wait a little longer.

Determining the cause of dementia

After referral, a specialist conducts a cognitive neurological and neuropsychological examination. After extensive examination, the specialist may or may not confirm the diagnosis of dementia. If it turns out to be dementia, the specialist can also determine the cause. It is important to make a specific diagnosis, as it can alleviate a lot of anxiety. In addition, after diagnosis, appropriate medication can be started to combat the symptoms. Early diagnosis allows patients to make arrangements for the future, something that becomes increasingly difficult at a later stage of the disease.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Treatment

Unfortunately, there is still no drug that prevents or can stop Alzheimer’s disease. There are drugs that fight the symptoms. The disease does progress, but the patient experiences fewer complaints. However, this medication does not have the desired effect for every patient and is therefore not always used.

Four drugs for Alzheimer’s disease

In the Netherlands, four types of medicine are available to reduce the symptoms of Alzheimer’s disease: galantamine, donepezil, rivastigmine, and memantine. These drugs cannot reverse damage to the brain but can limit the effects and symptoms of the disease. This improves daily functioning in some cases. The positive effects and side effects of the drugs differ per person, what works well for one patient, hardly helps for another and can also cause unpleasant side effects.

Medicines for additional symptoms of dementia

In addition, medications can be prescribed to reduce additional symptoms of Alzheimer’s disease. For example, painkillers can be used if a patient is in a lot of pain, or sleep medicine if a patient suffers from insomnia, or drugs against suspicion or aggression. A disadvantage of these drugs is in particular the chance of side effects. These also differ per patient.

Medicine research is much needed

Because Alzheimer’s and other forms of dementia are common and no successful treatments are available yet, a lot of research is being done worldwide into drugs that can stop the various diseases that cause dementia. Brain Research Center also conducts research into new medicines that can help current and future generations. The Brain Research Center cannot do that without you. Would you like to participate in a study of medicines for dementia? Then sign up.

Join our research

Not only will the generations after you benefit from thorough drug research, but there are also advantages for you as a patient. During the research, you will receive optimal guidance, the medical signs and symptoms are properly monitored and you can benefit from the possible effect of the new medicine.

Interested? Register at Brain Research Center.

Frequently Asked Questions

I am already taking other medication, can I keep taking them?

Yes, you will continue to take your current medications. After your registration, we look closely at your current medication use. If you use a lot of (heavy) medicines, this may be a reason for not being admitted to an examination, but this varies per study. Under no circumstances should you give up your current medication use.

Will the regular treatment with my current specialist (neurologist / geriatrician) continue while participating in drug research? Or will Brain Research Center take over?

The regular treatment with your current specialist (neurologist/geriatrician) will in principle continue during the period of the examination. The Brain Research Center will inform your specialist and general practitioner about your participation. During the investigation, checks will be carried out at various times. In case of abnormal results, Brain Research Center will, with your permission, contact your general practitioner or treating specialist. In case of changes in your health, your general practitioner or specialist may also easily consult one of our research doctors.

Is Brain Research Center also looking for participants without symptoms or without diagnosis to participate in drug research?

Brain Research Center mainly conducts research on patients who have already had a diagnosis, but sometimes there are also studies that look for healthy volunteers. You can therefore also apply if no diagnosis has been made.

Can I stop the research prematurely or are there conditions attached?

Yes, you can stop at any time. There are no conditions attached to this.

Brain Research Center has several drug studies: can I indicate which research I am interested in?

Yes, you can read about current studies on our website. You can indicate your preference for a study: for example, would you prefer to participate in a short study (for example, a few months) or a long study (for example, several years). The Brain research center determines, among other things, on the basis of your medical history, age, and current medication use whether you are suitable for the research of your preference. Different criteria apply to each study and the options are examined together with the research doctor. Participation in a study is of course always in consultation.

What does participation in research mean in specific terms?

Step-by-step plan for participating in research:

  1. Sign up
    Sign up at the Brain Research Center.
  2. Telephone intake and request medical history
    You will be called for an intake by telephone, information about Brain Research Center will be sent and a form to be signed to request the medical history from the attending physician (this history is necessary to determine whether you are eligible for research). You will be asked whether you have a so-called study partner. This is often your partner, a brother or sister, son or daughter, or neighbor: someone who knows you well and who can answer questions about your daily functioning. This person must be available to travel occasionally to appointments at Brain Research Center.
  3. Introductory meeting and choosing a study
    If Brain Research Center does not discover any reasons in your medical history why you should not participate in a study, an introductory meeting of half an hour will be scheduled in the Brain Research Center with the pre-screening specialist and research doctor. In this conversation, you get to know more and your preferences and expectations are mutually expressed. You will then receive detailed information about a number of drug studies so that you can read it through at home and discuss it with family or friends if necessary. You then choose which study you want to participate in.
  4. Screening
    During the screening, all kinds of examinations are done to determine whether you can participate in the drug study. Sometimes the inspection only includes a series of questions, sometimes laboratory tests are necessary. These studies are of course always carried out in consultation with you and with your permission. This screening takes one and a half to three hours and differs per drug research. Based on the results, it is determined whether or not you can participate in the chosen drug study. If you are not eligible for one study because, for example, your memory is still too good or too weak, you may be eligible to participate in another study. Each study uses different criteria for participation.
  5. Randomization
    In drug research, some of the patients are administered the drug in question. The other part of the patients will receive a placebo. A placebo is a medicine without active substances. The patients are randomly placed in a group by a computer. Neither the patients nor the Brain Research Center knows who is assigned to which group. In this way, the research results can be compared well: does the group receiving the real drug perform the same, better or worse than the placebo group? Once the drug trial has been completed by all participants, you will be notified whether you were given the working drug or placebo.
  6. Follow-up appointments
    If the screening has been completed successfully, follow-up appointments will be scheduled. The number of appointments and the duration of the appointments differs per drug study. On average, patients come to Brain Research Center 1 to 2 times a month for a visit of half an hour to a few hours. During the introductory meeting, you will receive more information about this. The documentation that you will receive also states how often you visit the Brain Research Center during the research. When planning the appointments, we naturally take into account any working hours and vacation plans of you and your partner as much as possible, but we also ask for flexibility on your part.
  7. After the research
    When you have gone through the entire research, the results will be assessed: have you remained stable, have you progressed, or have you regressed? We can then decide together, for example, to go through another study or to end your time at Brain Research Center.

Can I participate in research multiple times?

Yes, that’s possible. When you have gone through the entire research process, the results will be assessed: have you remained stable, have you progressed, or have you regressed? We can then decide together to go through another study, for example, or to en your time at Brain Research Center.

Is there a financial compensation for patients?

All patients are of course reimbursed for travel and parking costs. Lunch is also provided for longer visits. There is no other financial compensation. You are participating in a clinical drug trial because the drugs offer you a chance for improvement and because you want to help future generations with a drug for dementia. Another advantage of participating in a study is that your clinical picture is properly monitored and you receive good guidance and support from professionals during the study.

What does randomization mean?

In clinical drug research, some of the patients are administered the drug in question. The other part of the patients will receive a placebo. A placebo is a medicine without active substances. The patients are randomly placed in a group by a computer. Neither the patients nor the doctors know who is assigned to which group.

What does blinding mean?

A computer randomly places the patients in a group. One group will receive the drug in question, the other group will receive a placebo. A placebo is a medicine without active substances. Nobody involved in the investigation knows which group you are in. We call that blinding.

What do the drugs look like?

The study medication consists mostly of tablets. You can take this daily at home. Depending on the drug study, the medication can also be administered every few weeks by injection or by infusion. This is done in the Brain Research Center under the supervision of the doctor.

Do I always have a chance to get a placebo?

In most drug studies there is indeed an effective and ineffective (placebo) drug. The Brain Research Center has no say in the allocation of resources: this is done automatically and the Brain Research Center does not receive that information. The Brain Research Center can only request this information in acute emergencies. There are also a number of drug studies that only work with active substances. The research doctor can inform you about this during an introductory meeting.

Will the deductible of my health insurance be used if I participate in a study of the Brain research center?

No, the treatments at the Brain research center are not covered by health insurance. So you do not have to worry about any reduction of your deductible. For each drug trial, a separate insurance policy has been taken out for all participants. If you have any questions about this, ask them during the telephone intake or during the introductory meeting. Keep in mind that other things, such as check-ups with your own specialist (outside the Brain research center), go through your own health insurance.

Would you like to know more or participate?

Contact us

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