Alzheimer, about the importance of good care

Yesterday was World Day against Alzheimer’s. And therefore also in Flanders. In Flanders, 135,000 people are demented, the same as the number of residents of Hasselt and Kortrijk combined. 90,000 have Alzheimer’s, 25,000 vascular dementia and 10,000 mixed forms. Two thirds are women. The disease increases dramatically with age. My late neurology professor said jokingly in class: “If you don’t want to get demented, don’t get too old.” At the age of 70, 1.5% of Flemish people have dementia. That percentage has increased tenfold (15%) among people in their eighties.

Life expectancy is increasing

Above 85, one woman in four is demented and one man in five. For over-90s, this is just under one in two (women) and one in three (men). Two out of three people live at home, cared for by companion and / or family, supported by family care. The others stay in a residential care unit. Although the risk of dementia has decreased in recent decades, the number of people with dementia will continue to increase as life expectancy continues to rise.

In 2002 a Flemish man of 65 still had a life expectancy of 16.7 years. In 2017 this was 19.4 years. A Flemish woman of 65 could count in 2002 to live another 20.5 years. In 2017, her life expectancy had increased to 22.5 years. Another statistic. In 1985 there were six hundred centenarians in Belgium, in 2020 eighteen hundred. Worldwide there are tens of millions of people with dementia. The cost of the disease is higher than that of heart disease and cancer. Because life expectancy is now also increasing in middle and low-income countries, the largest increase is now there.

Diagnosis and screening

How do we diagnose Alzheimer’s dementia? VUB professor and dementia specialist Jan Versijpt: ‘The simplest and most efficient way is simply to interview the patient and especially the partner or relatives of the patient. These people are the objective witnesses to the slow cognitive decline of the individual. You can also make it much more complicated and make the diagnosis by trying to detect the Alzheimer’s proteins in cerebrospinal fluid or with expensive brain scans. We certainly do not do this as a routine, only for special cases with young people, for example. The definitive diagnosis is made after death by examining the brain. A diagnosis allows the person concerned and the family to make preparations. ‘

Does screening for who might develop dementia later make sense? I wouldn’t want to know now if I will develop dementia later on. Versijpt: ‘No, we do not screen for the simple reason that there is no treatment for the disease. Moreover, there is no single reliable screening method. What if you can detect the beta-amyloid protein early? That protein is in the brains of many people and we do not know which of them will later develop dementia. Screening may be useful for a very, very small group of families where dementia occurs in 50% of the offspring. There one could do in vitro fertilization, select the embryos that carry the Alzheimer genes and then only put those embryos back in the womb that are free of Alzheimer genes.

Dementia is in the genes

It is common in the population that Alzheimer’s dementia is family-related. Not infrequently, patients tell me that, following the example of one or both parent (s), they are afraid of developing dementia later on. Professor Versijpt: ‘Globally, dementia (and certainly Alzheimer’s) has a genetic predisposition in about 60% of the cases. That’s quite a lot. To date, several dozen genes have been identified that are involved in the development of the disease, but not a single gene stands out.

That’s why we don’t track them down, what are you doing with it? You can have a bunch of dementia genes and still never get the disease, because it also depends on whether the genes are activated or remain passive. Remember, age is by miles the number one risk factor. Even people with a rare, strong genetic predisposition will rarely be demented by the age of 70. Only later does their genetic predisposition cause an extra increase in the disease. ‘

Therapy

You hear a lot of nonsense. Superfood, ginseng, antioxidants and the like may slow down Alzheimer’s. Don’t believe that. Verijpt: ‘Alzheimer’s cannot be cured. Medicines can slow the process for six months, that’s a little better than nothing. Pharmaceutical companies are busy testing new molecules, but the yield is very low, the research costs very high and the frustration even higher. The main problem is that studies are very time-consuming, time that is often not available for young PhD students with a time-limited research program.

Alzheimer’s research is at an end. Specific medications can relieve associated symptoms of Alzheimer’s such as depression, sleep and anxiety disorders, agitation or hallucinations. But be careful with medication. People with dementia far too often take antidepressants and drugs for psychoses. In Belgium, this concerns 70% of the demented population. Some of these drugs can have serious side effects such as falls, difficulty swallowing or even strokes. Getting attention, making music or encouraging exercise are more effective, but are of course more labor-intensive and therefore more expensive. ‘ The aim of dementia therapy is to improve the well-being of both the sick and the caregivers.

Informal care

Nothing can stop the disease. That is why the focus is on care. For informal carers, living with a person with dementia is difficult, both mentally and organisationally. The adult children of the sick grandmother or grandfather work outside the home, the grandchildren attend school, and the house is empty during the day. Close relatives therefore often give up the job and vacations to take care of the sick. Due to the increasing life expectancy, the carers are often over 65 themselves or if the life partner takes care of the care, even over 80s. A person with dementia requires a lot of patience and understanding. The sick person is no longer the person the family has always known.

Informal carers constantly ‘say goodbye’ to the patient’s skills. In the movie ‘No mans land’ theater maker Adelheid Roosen tells about her demented mother: ‘If one of the parents develops dementia, you become a kind of guardian of the demented person. The logic of taking care of it, I help you and you are grateful, disappears. Your mother doesn’t even recognize you and you shouldn’t expect gratitude. ‘ A few months before her death, my very elderly and starting dementia mother said to my brother and me: ‘You were my children, now I will be your child’.

Behavioral Therapy

Caregivers experience tons of stress. People with dementia can sometimes be very anxious and there is little you can do about it, you cannot comfort them and free them from their fear. A loved one’s dementia makes the caregivers sad and they often have health problems themselves. Did you know that the risk of dementia in the partner who lives with a person with dementia more than doubles? ‘Getting lost’ is often a reason for admission. The sick places in a care institution can cause feelings of guilt among the informal carers.

Alzheimer’s is a disease in which the support and treatment of the caregiver is just as important as that of the patient. Getting professional help is the best thing to do. There are aid programs for informal carers to learn how to deal with the demented person better. Behavioral therapy helps to emphasize what the patient can still do and not on the lost skills.

The essence of the problem

A statement by the professor of neurology and director of the Alzheimer Center in Amsterdam, Philip Scheltens, has stayed with me: ‘In a nursing home, people with dementia can be who they are. At home it can happen that the irritation of the loved ones is great because people start to compare it with how the person used to be. The person with dementia feels that.

The family has difficulty accepting Alzheimer’s and says: ‘she could do this, she could do that, and now no longer’. The difference with a professional nurse in a nursing home is that the latter accepts the dementia patient at the level at which she arrives at the institution. The family always looks at the level where the dementia patient comes from. That is the essence of the Alzheimer’s problem and we should be able to let go of that as a family. ‘

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