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Informal Carers (including family, friends)

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As a non-professional caregiver, caring for your spouse, parents, or friends who have dementia, is a very special task. Unlike the professional caregivers, you as a non-professional caregiver has an emotional relationship, which can be very strong and it gives you a benefit compared to professionals because you know the person’s preferences and history. On the other hand, it can contribute to you not always being able to choose what is best for the person with dementia, as you may have problems seeing clearly, when one is personally involved.

It is a very painful, stressful and possibly unhealthy situation to see your loved ones disappear little by little. Nevertheless, there is a large number of relatives who take on them this task either voluntarily because it makes sense or less voluntarily because it is a necessity for their loved ones.

For the non-professional caregivers, it is a great benefit to know what this disease does and understand how it affects the one they care about. It makes the caregiving a little easier and the disease more understandable.

Dementia is a disease and not a natural and inevitable consequence of getting old. Several different diseases can cause dementia. Alzheimer’s disease is the most common cause of dementia. In Denmark, for instance, it accounts for 62% of all dementia cases, followed by Vascular Dementia with 17%, Lewy Body dementia with 4%, Frontal Temporal Dementia with 2%. The last 15% consists of different diseases.

With this little description, we hope to make you wiser about which different areas the brain controls and how dementia can affect the brain. Dementia is a disease of the brain that affects various functions due to the changes it causes in the brain. Most importantly, the connection between the cells in the brain are destroyed and some of the brain cells die. The brain cells die for various reasons and to understand the significance of the brain cells dying, it is necessary to know a little about how the normal brain works and how the cells work together.

The brain

The brain controls the body; it initiates all movements and reactions. It perceives sensory impressions and controls our behaviour and thoughts. If you burn your fingers, a message goes via the spinal cord to the brain; you remove your fingers and think or say “off”.

The illustration shows what the different areas of the brain are called and where they are located.

As a relative of a person with dementia, one needs to understand that cognitive deficits (such as memory problems and language disorders), behavioural changes (such as challenging behaviour and anger), and motor symptoms (such as slow movements or paralysis) tell something about which parts of the brain is affected by the dementia disease that the person is suffering from.

People with dementia cannot help the way they behave and they cannot help if they forget everything: It is due to the disease and they cannot “just pull themselves together”. It is also important to emphasize that people with dementia do not try to annoy their relatives, but that they react as they do because the demands we have made, might be too demanding and they do not have the resources to do the things differently than they do, even though they themselves wish they could. The problems you, as a relative, experience when your spouse, parents, grandparents or friends have dementia depend on where the disease has affected the brain.

The brain is like a building and it needs maintenance. The cells need to be used to keep going. Humans have over 22 billion brain cells, but it is not the large number that is important, but rather the cooperation between the cells. The brain continues to develop through life if it is stimulated and we form new brain cells throughout life. A single brain cell can have more than 10,000 connections to other cells. The visual cortex, for example, has up to 20,000 connections with other cells. When a brain cell is dead, it can no longer send or receive impulses and the puzzle that the brain constantly is putting together breaks down. This is what the relatives may experience when the person with dementia no longer can find their way or no longer remembers birthdays, even though they always have been good at it.

In the brain centre, cells are assembled into large nuclei that act as a kind of assembly point or relay station. The impulses meet here and enable cooperation and redirection of impulses to other places in the brain. We learn through childhood to sort out all the impressions the brain receives so that unnecessary information is rejected and this way the brain only has to deal with what is relevant. When these areas of the brain are affected by dementia, the person with dementia may have difficulty concentrating and seems easily distracted. That is, if a person concentrates on looking in a magazine and a loud sound can suddenly be heard, then he/she cannot again concentrate on the magazine, but will try to find out where the sound is coming from. And if a person is putting on clothes and someone says something, the person with dementia will stop the process completely.

In other areas, the brain gathers different sensory impressions so that they make sense. If, for example you see something yellow on four wheels, which comes towards you and which says a certain sound, the brain connects the two sensory impressions and we perceive that it is a yellow car coming. If a person is affected by dementia in these areas, sensory impressions are misinterpreted. In the case of the sense of hearing, music can be perceived as noise or one cannot understand what is being said, even though one hears normally and can distinguish language sounds. This may mean that the world no longer makes sense. The person with dementia, for example, cannot recognize his toothbrush and therefore does not know how to use it and might try to comb his hair with it.

After the senses have been processed in the healthy brain, they usually reach the frontal part of the brain, where plans are made and where behaviour is controlled. Here is a kind of quality control. “Is it okay for me to act this way or not?” This part of the brain is initiating, controlling and directing all conscious behaviours. If there is damage in these areas, one cannot direct and control actions or act in accordance with norms and values in one’s own culture.

For people with dementia, this may mean that they practically cannot figure out how to perform ordinary actions, such as how to get dressed, how to take a bath, etc. If the person is affected elsewhere frontally, they may have difficulty controlling their actions and controlling their temper.

Injuries in this part of the brain can make it harder to organize one’s life, to take initiative and to keep on track of things. Some people experience mood swings and may become angry or cry for no reason. Others become more uninhibited and may say embarrassing and cross-border things. People with dementia in the frontal part are often a challenge for both relatives and caregivers. They can walk around without wearing clothes because they are not freezing. They can snatch the cake dish and empty it instead of sending it around and if a woman comes by, a man can slap her behind if he wants! It is not about him being uneducated, but about him being unable to inhibit his impulses or show empathy. What is important here, again, is to understand that this is not a conscious behaviour. The person with dementia acts on an impulse that he could not inhibit.

Firstly, you can help people with dementia to create a structure in their everyday life, so that they do not have to do it themselves, because that is exactly what they are unable to do. It is also a task for relatives and caregivers to help them so that they do not end up in situations that they cannot handle.

Overall, one can consider the brain as a company where different departments have different tasks. Alexander Lurija, who was a Russian neuropsychologist, divides the brain into blocks according to function. Block number one consists of the brain stem, the emotional brain and the cerebellum. These areas control alertness, reaction readiness such as fight or flight, temperature, blood pressure, respiration, hunger/thirst and sex drive/lust. It is the brain’s energy centre. In relation to the image of a company, it is here “gate keeper” watches. The concierge opens the business, makes sure the energy supply runs and decides who comes in and who does not.

Block number two consists of the midbrain: It is parietal lobe, the temporal lobes and the occipital lobe and here the impressions that come from block number one are processed. In the picture of a company, it can be said that it is the experts who receive and process the materials that are sent into the company. Block three consists of the frontal lobes and the motor part of the brain. This block is responsible for planning, managing and adapting behaviour. This is where new ideas are created and thought processes of cognition emerge. The motor part of block three assembles and performs movements. If we see the brain again as a company, then block three is where the management and the boss sit. Block three is closely related to both block two and one. The managers of the company make sure that the quality of the products is in order. When you talk about brain “products”, we mean movement and actions. The quality of a movement is about being smooth and well-coordinated. The quality of actions and behaviours depends on what is culturally appropriate in a situation.

If dementia strikes in block one, the affected person will have great difficulty staying awake and may fall asleep in the middle of an activity. This is sometimes seen in people with the Lewy Body dementia, as this type of dementia can affect the brainstem level. If dementia hits block two, you see problems with sensory processing and you have difficulty understanding the world around you. Persons with Alzheimer’s dementia are frequently affected here and in addition to memory problems, they have language and sensory challenges. If dementia strikes block three, as occurs with front temporal dementia, it is seen that the person has difficulty controlling his or her behaviour or loses the idea of how to perform actions.

Symptoms of dementia.

Although dementia is often slowly developing, there is a tradition of dividing the process into three stages corresponding to three degrees of dementia. The division is purely descriptive, and in practice, it is difficult to distinguish precisely between the three phases.

Mild dementia
The cognitive impairment only causes slight impairment of functional ability in everyday life. Routine-based daily and leisure activities can still be carried out and enable a largely independent existence. Complex tasks such as using public transport or the Internet often cause problems.

Moderate dementia
The cognitive impairment leads to a significant impairment of functional ability. The person no longer can manage in everyday life without the help of e.g. a healthy spouse or professional help measures – for instance home help, day care centre, home nurse and food delivery. The person with dementia can rarely be alone.

Severe dementia
The cognitive impairment means that the patient is completely dependent on the help of others. Moving to a nursing home will often be necessary. Regular monitoring is required.

The relative distribution of mild, moderate and severe dementia varies with age. In the ‘younger’ age groups, there are relatively many people with mild dementia and in the older age groups a higher proportion of people with severe dementia are seen. The English Alzheimer’s Society has estimated that mild dementia across the age groups amounts to approx. 55% of all dementia cases, moderate dementia account for approx. 32% and severe dementia account for approx. 12-13%. These numbers should be comparable to other Western European countries.

Common symptoms of dementia.

Most people with dementia suffer from memory problems, but other mental skills are also affected. It can be:
• initiative and action
• the ability to find words and names
• the ability to find a way (location)
• numeracy
• overview and problem solving

The person with dementia can change, social skills, emotional life and personality can be affected. This means that it will be harder for the person to overview the social interaction and he/she will find it difficult to get into the situation of others. The person can also lose his/her situational awareness. All people may find that there is something they cannot remember but if it affects a person’s ability to cope with everyday life, there is reason to suspect some kind of dementia.

Diseases associated with dementia are divided into three categories:

1. Neurodegenerative diseases. Neurodegenerative diseases are diseases where a gradual, often slow breakdown of the brain and its functions occur. For example, Alzheimer’s disease, Frontotemporal Dementia or Lewy Body Dementia.
2. Vascular Dementia. Vascular Dementia is dementia caused by disturbances in the brain’s blood supply or blood vessel. The disturbances may be due to blood clots, bleeding or narrowing of the blood vessels of the brain.
3. Other diseases. A number of other diseases with direct or indirect influence on brain function can cause cognitive impairment. For example, there may be metabolic disorders, chronic deficiency of B vitamins or poisoning conditions.

The distribution of the different categories of dementia in Denmark:


The figure shows the distribution in Denmark of different diseases causing dementia. 62% has Alzheimer’s disease, 17% has Vascular Dementia, 10% a mix of Alzheimer and Vascular Dementia, 4 % has Lewy Body Dementia, 2% has frontotemporal dementia, 2% has Parkinson’s with dementia and other diseases cause 3%

The possibility of treatment is different depending on which disease is the basic one. Counseling and practical assistance, care and relieving of relatives are important elements of the treatment. In addition, doctors since the 90’s have been able to prescribe medications that temporarily dampen the symptoms of, for example, Alzheimer’s disease. In Vascular Dementia, which may be due to blood clots in the brain, the treatment aims to prevent the formation of more blood clots. Some of the diseases can be cured, e.g. metabolic disorders, depression, side effects or misuse of medicines. It is therefore important always to clarify what the cause of the symptoms is. Therefore, it is equally important to be diagnosed as early as possible.

Characteristics of Alzheimer’s dementia

Alzheimer’s dementia covers by far the largest proportion of people with dementia. Typical symptoms are memory problems, especially short-term memory is affected and one has trouble finding the right words, especially nouns are hard to remember. Everyday life is affected because it becomes harder to overlook ordinary things like finding out, counting money and paying, etc. As the disease develops, changes in emotion, temperament and social engagement can occur. People who have been open and social are being retrenched and confined and the mood can fluctuate a lot.
The symptoms develop slowly and the person may think that he is just tired or stressed. Gradually, the symptoms become harder and the surroundings are beginning to notice that something is wrong. The person can no longer fit a job or make his everyday work. Therefore, help is needed and in the longer term, professional help is needed.
The course of illness lasts an average of 8 to 10 years.

It is typical for Alzheimer’s dementia that it develops after the age of 65; this type is not hereditary. But the other type which is inherited or due to mutations can affect already at the age of 40. The main risk factor for Alzheimer’s disease is high age, but living conditions and behaviors that increase the risk of cardiovascular disease are important, for example high blood pressure, diabetes and smoking.

Hat’s story: living with Alzheimer’s disease

Vascular dementia

Vascular dementia is caused by blood clots in the blood vessels of the brain. The disease can thus occur in all parts of the brain. Blood clots that are formed in the heart as a result of irregular heartbeat (atrial fibrillation), or that break free from atherosclerosis of the carotid arteries, can be routed with the blood stream to one of the brain’s larger blood vessels where they can get stuck. As a result, a larger brain area is deprived of its blood supply and is destroyed (this is called an infarct). If the injury is sufficiently large or hit a critical area, it can cause dementia. If the patient has more blood clots in other blood vessels in the brain, the damage will become more widespread (multi-infarct dementia).

Vascular Dementia is the second largest group of dementia diseases. The symptoms are very different here as it depends on which areas in the brain are affected. There may be forgetfulness, difficulty in concentrating, language problems, and more. There may be hemiparesis and therefore difficulty walking, disturbed tactile sense or narrowing the field of vision. If the person is hit in the deep structures of the brain, the person can become apathetic and the thinking gets slower, you get trouble concentrating when solving more complex tasks. Persons with vascular dementia often show depressive symptoms. One’s emotional expression can fluctuate a lot, one cannot control cry or laughter, and emotional responses can emerge in situations where one does not feel sorry or happy. Unlike, for example, Alzheimer’s disease or Lewy Body Dementia, Vascular Dementia is not a neurodegenerative disease and the condition is not necessarily progressive. The symptoms of vascular dementia vary, as both the number and size of the vascular lesions, as well as the location of these, affect the symptoms and the degree of dementia. In some cases, there have been one or more strokes (apoplexies) with sudden onset, half-sided paralysis or speech impairment prior to the development of dementia. In other cases, the changes in the brain gradually occur without the occurrence of stroke.

The risk factors are almost the same as for cardiovascular diseases. Our lifestyle affects several of the risk factors. It is important to exercise, eat healthy and avoid smoking because it both reduces the risk of cardiovascular disease and vascular dementia. If you have diabetes or high blood pressure, it is crucial to be treated.
Vascular Dementia is not inherently in itself. Some of the risk factors for Vascular Dementia are partially hereditary, but are highly influenced by lifestyle.

Olive’s story: living with Vascular Dementia

Lewy Body Dementia.

Lewy Body Dementia is caused by the accumulation of a protein in the brain stem and therefore affects motor and movement. Lewy bodies are accumulations of a protein inside nerve cells deep down in an area of the brain, called the brain stem that helps activate our movements.

Lewy Body Dementia is a neurodegenerative dementia disease that, in addition to dementia, also can cause movement disorders resembling the symptoms of Parkinson’s disease, as well as visual hallucinations and alternating attention. There may be shorter or longer episodes where the person seems distant, unclear or confused, but the condition may change from day to day and from hour to hour. The person may seem dull, indifferent, tired or numb, stare out into the air for longer periods and sleep more than usually during the day.

The person’s ability to plan, overview and orientate is influenced. Lewy Body Dementia also means that the affected person tends to see visions during periods. The visions are usually quite lively, detailed and natural, e.g. in the form of people or animals that are present in the room without saying anything. The visual hallucinations do not necessarily seem scary. Three out of four patients get worse in walking and developing slow and rigid movements. The fine motor control also gets worse, the speech becomes lower and slower, and there is less mimic. Lively nightmares and troubled movements disturb some patients’ sleep. Sleep disorders may develop several years before the other symptoms and occur frequently.

Lewy Body Dementia is the third or fourth most common form of dementia. Lewy Body Dementia can even be difficult for specialist physicians to distinguish from Alzheimer’s disease and Parkinson’s disease, which contributes to the uncertainty about how frequently the disease occurs.
Lewy Body Dementia is a slow progressive brain disease that specifically affects older people. Hereditary forms of this disease have not yet been found. The greatest risk factor for the disease is age. There is no cure for Lewy Body Dementia, but medicine can temporarily dampen the dementia symptoms. It develops slowly and gradually, and often begins with changes in awareness or state of consciousness. The average debut age is around 75 years, which is about the same as for dementia of Parkinson’s disease. The disease is more frequent in men than in women.

Themiya’s story: living with dementia with Lewy Bodies

Frontotemporal Dementia

Frontotemporal Dementia is not a single but many different diseases, each with its own distinctive characteristics. Common to the diseases is that they all start at the front of the brain and therefore alone cause the same kind of symptoms.

Frontotemporal Dementia is often abbreviated FTD. Frontotemporal Dementia manifests itself in the form of gradually increasing changes in personality, behavior and/or language and differs from Alzheimer’s disease because learning and memory may still be intact in the process of the disease. However, the disease means that inhibitions of impulses and situational judgment perceive or disappear and the patient exhibits impulsive and uncontrolled behavior and indifference to social norms. For example, the person may tend to eat or drink too much. The symptoms may look like certain psychiatric diseases, and Frontotemporal Dementia therefore can be difficult to diagnose. For example, at the beginning of the process of the illness, the doctor may think that it is a crisis action or a mania.

The cause of Frontotemporal Dementia is unknown, but 40% of the cases are hereditary. Frontotemporal Dementia cannot be cured and there are no drugs that slow down the disease. Nevertheless, it is very important that the person with dementia and the family members get the right advice and support early. Disorders of behavior and psychiatric symptoms are primarily dealt with by a specialized social education effort and by adapting the housing and environment in which the person lives.
Frontotemporal Dementia often debuts earlier than other dementia diseases, typically between 55 and 65 years old, but it can also happen much earlier. The average survival time is from six to eight years. However, some have lived with the disease for up to 2 decades.

Frontotemporal Dementia (FTD)

Video 1   Video 2 Video 3 Video 4

Characteristics of other diseases.

There are a number of diseases that contribute dementia. Here, we will just mention a few since they do not affect as many people as the four above mentioned types

  • Alcohol-related dementia: Dementia caused by alcohol abuse does not constitute a well-defined disease state. It is uncertain whether it is alcohol itself that has a lasting harmful effect on the brain or whether the harm is caused by, the unhealthy lifestyle often associated with alcohol abuse.
  • Huntington’s disease is a pronounced hereditary disease. At Huntington’s Disease, there is often a mixture of neurological and psychiatric symptoms and often dementia in the late stages. Symptoms may vary from person to person, but there are usually different degrees of involuntary chorea, uncertain gait and possibly more twisting movements (dystonia). Dementia is not seen in everyone. It develops slowly and only later in the process. In addition, delusions and depression may occur. In Denmark, there are around 300-400 patients with Huntington’s Disease.
  • Disseminated sclerosis is a disease in which the body makes an inflammation reaction (inflammation) that destroys the isolation around the nerve threads. Disseminated sclerosis can develop dementia. There are also other rare inflammatory diseases that can affect the brain and give dementia.
  • Certain heavy metal poisons, including lead and mercury, and prolonged exposure to organic solvents can cause memory and concentration weakness as well as dementia.
  • These diseases are rare causes of dementia. There are different types of body metabolism processes that can affect the brain, so it causes dementia symptoms.

Huntington’s Chorea