Specialized Caregiver in Psychogeriatrics

Introduction

We asked Mariët to tell us something about her work as a GVP-er

GVP is the abbreviation for 'Gespecialiseerd Verzorgende Psychogeriatrie' meaning 'Specialized Caregiver Psychogeriatrics', a specialization in dementia care.

Read more about Mariët at the bottom of this page.

Care adventure

The title of my website is Mariët on a care adventure.
I share the adventures I experience during my work in a small-scale home for people with dementia here on my page. Contrary to what people might think, I do not make these adventures more beautiful than they are, I really experience them that way.
And of course it is not always easy, fun and positive. Just like when you go on a travel adventure, you can encounter obstacles, less beautiful things or experience sad things. And that is what happens in the home.
Joy and sorrow are shared, and difficult things also come my way.

Dementia often also causes difficult and sad situations. As a care worker, I eventually develop a bond, a connection with the residents. And then a deterioration in the condition of a resident can, for example, make me emotional.

When dementia gradually worsens, you can still more or less live towards this. (although I am not saying that this is easier for the loved ones...).

However, when vascular dementia suddenly appears to cause large "gaps" in various brain functions within a few days, with all the consequences that entails, it is very difficult to follow.

When you can no longer get your words out from one day to the next, become angry, rebellious and sometimes even aggressive, suddenly can no longer move properly, you become incontinent and you are in pain and extremely tired, it is not surprising that you are treated with a lot of compassion and empathy.

When I sit down on the edge of the bed with the resident in question next to me, I tell him that we are worried about him, that I would like to do something for him, but I don't know what. He looks at me with a faint smile on his face, he puts his arm around me and rubs my back, as if he wants to say: everything will be fine.

I feel the tears pricking behind my eyes, that he now finds the strength in this situation to more or less comfort me….

An adventure? Yes, definitely, and a life lesson richer, always keep looking after each other and feeling is in the heart, not in the damaged brain.

Mariët

FORGET IT!

(a blog from the practice of a client with Lewy body dementia)
During one of the meals in the home, I as a care worker often hear the same questions and comments. Often I don't even notice it and answer the same answer just as many times.

Suddenly one of the residents says to me: Boy, you have to listen to the same thing here quite often, don't you? Oh well, they can't help it, I know that, it's because of their desease.

I answer her that I don't mind at all having to listen to the same thing a thousand times and having to repeat it often. I carefully ask her, but what about you? Aren't you afraid that you do or will do this too?

The lady has a condition that causes dementia but where the memory can remain intact for a long time. And she knows very well that she is ill and can also become very forgetful.

"Oh..." she answers me "I will probably do this too and maybe I am already a bit forgetful, I don't really know. I know that it is part of my illness."
She says all this so calmly and quietly as if it does not concern her, how can she remain so calm about this, you would panic!?

It is so incredibly different how people can deal with grief and illness. I carefully continue on this subject. How does she view this? "Do you not feel panic or unrest when you think that this could also happen to you. That you will forget and repeat things?"

"No, it does not help to think about this, if it is what it is.

However, I would find it bad for my children if I forget their names or no longer know who they are.
But I have found a solution for that, she confides. When I lie in bed at night, I repeat names and important things a hundred times in a row, then I hope that by repeating them I will at least not forget those important things”.

I get goosebumps on my arms, she has already told me several times that she sleeps so badly, and now I think I understand where this comes from. I can already imagine her practicing for hours like a mantra in her head to at least not forget what she absolutely does not want to forget.

And for a moment I wish that she would just forget that she forgets because sometimes forgetting is better than remembering.

Disease description vascular dementia

(text by Mariët)

After Alzheimer's disease, vascular dementia is the most common cause of dementia. Approximately 10-15% of people with dementia have vascular dementia.
Vascular means relating to the vascular system. This is the network of blood vessels with arteries, veins and capillaries.
Vascular dementia is also called "multi-infarct dementia" (MID) because there can be an accumulation of small and/or large cerebral infarctions.
Another name is "arteriosclerotic dementia".
The brain damage associated with this form of dementia is caused by disturbances in the blood supply to the brain, which causes brain tissue to become damaged and die.
Many people with vascular dementia have a history of cardiovascular disease. Before the dementia started, these people suffered from chronic high blood pressure, cardiac arrhythmias, diabetes, vascular disorders or TIAs (Transient Ischemic Attack is a temporary blockage of a blood vessel in the brain. The blockage is caused by a blood clot. The blood clot dissolves again. That is why the complaints are often temporary).

It is also possible that a patient has had one or more infarctions or strokes before dementia began. In a CVA, cells die and the symptoms are not temporary.
The disorders that occur depend on the location in the brain that is affected.

Shock-like progression and stable phases

Vascular dementia is characterized by a shock-like progression, in addition to the general characteristics of dementia.
Closures of the blood supply in the brain occur from one moment to the next and then a smaller or larger part of the brain can fail.

The result is that brain functions suddenly deteriorate a step with each closure. It is also typical that the deterioration concerns different functions each time. They also speak of focal phenomena, because the failure is always linked to a focal point. This is the area of the brain that is deprived of oxygen.

As long as no new closures occur in the brain, the person with vascular dementia can also remain stable for a long time.
Common symptoms of failure are loss of motor functions, hemiparesis or paralysis on one side, impairment of speech, sensory disturbances, and hemianopia on one side.

After loss of a certain part, the level of functioning can remain stable for a long time (sometimes even improving again), followed by a sudden new deterioration.
Memory and orientation problems are initially much less noticeable in vascular dementia than in Alzheimer's disease.

First of all, vascular dementia is often characterized by a slowing down of speed in thinking, speaking and moving.

There may be problems with using and understanding language (aphasia), problems with recognizing objects (agnosia)
or performing actions (apraxia).
Disturbances in dealing with demanding situations and in the ability to reason logically can also occur. It all depends on which part of the brain is damaged.
One of the most characteristic features of vascular dementia is the combination of mental decline and physical symptoms. As a result of brain damage, paralysis, muscle stiffness or loss of sensation can occur. This can cause problems with walking, speaking, swallowing or urinating.

A new stroke may occur, after which new symptoms appear or existing ones worsen. There may also be physical discomfort, which is a result of cardiovascular diseases, such as chest pain, shortness of breath or fluid retention.

Another characteristic of vascular dementia is that people with this form of dementia can remain aware of their own decline for a long time. People know that they are deteriorating and are ill.

This can lead to gloomy or rebellious feelings. Someone's moods can change quickly and be extreme. One moment tears and a moment later a fit of laughter. The clarity can also vary, with good days, when nothing seems to be wrong, alternating with bad days.

Sometimes delusions and hallucinations occur, for example, when someone is convinced that something has been stolen.

Finally, disorders in taking initiative can arise. Someone is less and less able to take action themselves.

As the disease progresses, someone with vascular dementia increasingly becomes dependent on care. The patient can lose control over the body, which can lead to physical complications such as stiffness and/or paralysis.

It even happens that when there is poor blood flow in a certain area of the brain, this can cause epileptic symptoms.

Due to the erratic course and the inability to predict the damaged areas and the associated functions in the brain, it is a condition that can cause a lot of frustration and misunderstanding.

Disease description Fronto Temporal Dementia

(text by Mariet)

Another condition that can cause dementia is Fronto Temporal Dementia, or FTD for short. Previously, this disease was also called Pick's disease.

There are several known variants of this condition, but it is too complicated and extensive to describe all those subtypes.

FTD is a condition of mainly the front part of the brain, the frontal lobe and the temporal lobes.
Characteristic are the swollen, balloon-shaped nerve cells of the forebrain.

This disease is caused in a limited number of cases by an abnormality in the hereditary material, but usually the cause is unknown. What is also characteristic of this disease is that it occurs at a relatively young age (between the ages of 40 and 60).

Insidious onset

The onset is usually insidious and the first symptoms that manifest themselves are mainly:

behavioral changes
personality changes.

For example, people start to function poorly at work or get into conflict with family and acquaintances without a clear cause.

Physical disorders such as stereotypical facial features can also occur.

When you look at the functions of the frontal lobe and the temporal lobes, you see that most problems arise there.

Functions of the frontal lobe:

intelligence
impulse control
being social etc. See more on the frontal lobe page.

The temporal lobe largely determines:

behavior
memory
uninhibited talking,
understanding of spoken words etc.

See more on the temporal lobe page.

Most common symptoms

As with Alzheimer's disease or vascular dementia, not all symptoms occur in all people with FTD and the time at which the symptoms occur within the disease process may also vary.

Planning and insight

The ability to plan and organize is reduced. It becomes increasingly difficult to perform a complex action or to bring it to a successful conclusion.

Another characteristic is the reduced ability to judge. It seems that no connection can be made between cause and effect.
Difficulty in assessing one's own situation and judging the effect of one's own behavior.

Insight into one's own problems can quickly disappear. These symptoms can be compared to a healthy person who is under the influence of alcohol to a certain extent.

Impulsive and maladaptive behavior

People with FTD are often very impulsive. Control over impulses can quickly be lost. For example, someone with FTD may become inappropriately cheerful or aggressive. This person may say what he or she thinks, without taking into account the consequences or the feelings of others.

For example, people may become reckless in traffic or use coarse language.

In combination with reduced judgment, this can lead to socially maladaptive behavior. There is no or too little consideration for others, or there is reduced empathy with even childish and/or egocentric behavior. (complaints differ per person!)

Disinhibition

The disinhibition can for example come forward in eating behaviour. The food can be gobbled down and the person keeps eating. People can also develop a preference for sweets.

This of course results in this person gaining a lot of weight.

Another example is that all kinds of thoughtless purchases can be made. There can be disinhibition in the sexual area, consisting of making sexually suggestive remarks, groping or an increased need for sexual contact.

Compulsive behavior

Compulsive behavior is one of the most striking and characteristic behaviors in people with FTD. Clients with FTD may be extremely attached to certain sequences and rituals.

Daily life must proceed according to a fixed pattern. For example, eating is done at exactly the same time every day, even if the food is not yet cooked. Or people may feel the urge to count constantly, compulsively make a certain sound, drum their fingers, clap, rub their hands, tap or click their tongue.

People with FTD may feel an inner compulsion to behave in a certain way. Failure to do so causes them a great deal of tension. There is a great deal of difficulty or even a lack of flexibility in their thinking, which is why these clients often remain “stuck” in a certain behavior or habit, even if it is no longer functional.
Collecting frenzy can occur, whereby often worthless objects, such as nails, are collected.

Personality changes

A person with FTD may become very restless and start to "pace" endlessly and aimlessly.

In other cases, there is a strong inhibition and general loss of initiative. It seems as if the "starter motor" is broken. These people can no longer get anywhere if they are not stimulated by someone else. In addition, the order of actions cannot be properly overseen. This inhibited image may lead to situations of severe neglect.

There are people with FTD who are very extroverted (open) or very withdrawn. Many people with FTD may do nothing for hours until someone gives them an assignment, but others may also be very impatient.

In terms of mood, there is often a kind of childish silliness and cheerfulness, which seems exaggerated to those around them.

Language and memory problems

When the disease progresses or is already at an earlier stage, language problems may arise. There is an impoverishment of the vocabulary and someone may then fall back on frequent use of standard expressions. Increasingly using the same word to indicate different things, or repeating words/parts of sentences that the other person says.

There is great difficulty in ordering separate words into a sentence. Eventually you see a total decrease in spontaneous speech. Understanding spoken and written language usually does not cause any problems.
At a later stage, swallowing disorders can occur with the risk of choking, food in the lungs and pneumonia.

Motor problems

Some types of FTD cause motor problems. People have difficulty with movements. They have stiff movements, tremors and weak muscles. Balance problems and falling are also characteristics.

Memory problems are not prominent in this disease. Orientation in time, place and person also remains intact for a long time.
Diagnosing is often a long process. Doctors are sometimes misled, because the personality disorders and behavioural changes often appear psychiatric.

It has often happened that burnout, depression or psychosis is suspected. The initial period causes a lot of tension and irritation at home and at work. Within a relationship, apathy, reduced interest and lack of initiative are more likely to be attributed to attention-seeking, selfishness or indifference. At this age, people often do not think about the possibility of (frontotemporal) dementia. Tensions within the family can run high, sometimes resulting in divorce.

Modern brain scans can sometimes show that brain cells die off, especially in the frontal lobe.
The cause of FTD is often unknown. In some cases, it may be a hereditary/familial form of frontotemporal dementia. During diagnostic testing, it is therefore always important to ask whether dementia occurs in the family.
Damage to the frontal and temporal lobes of the brain, for example as a result of a stroke/CVA, an accident or long-term, excessive alcohol consumption, can also lead to frontotemporal dementia.

There is no specific medication available for the treatment of frontotemporal dementia. Research is being done to determine whether a group of medications called NMDA antagonists can slow down the disease process in frontotemporal dementia.

It is still unclear whether these medicines can actually do this.

Antidepressants, antiepileptics, antipsychotics and sedatives are used to treat disinhibited behaviour. Some antidepressants also have a beneficial effect on swallowing disorders in frontotemporal dementia.

In addition to medication, guidance of the family is very important.

On the one hand, because the behaviour of people with frontotemporal dementia is very confrontational for the family.

On the other hand, specialist guidance is needed when there is a suspicion of a hereditary/familial variant of frontotemporal dementia.

Order and structure

Dealing with someone who suffers from FTD should be focused as much as possible on providing order and structure. Impulsive behavior is stimulated by events that deviate from the daily pattern. Every change in situation can be experienced as unsafe and threatening.
Because people with FTD are often relatively young, and they are often fully involved in life, entire families are affected by this disease. Certainly due to the personality changes and behavioral disorders, this can drive entire families apart before the diagnosis is made.

Parkinson's dementia

(Text by Mariët)

Parkinson's disease is a disease that is mainly characterized by disorders in movement. The onset of the disease is usually between the ages of 50 and 65. There are a few known cases with a lower onset age. It is a rare condition, and the chance of getting the disease increases as you get older. The average duration of the disease is eight years, but can vary from one to 30 years!

In an advanced stage of Parkinson's disease, dementia can occur. This is therefore also called Parkinson's dementia. Parkinson's disease starts insidiously with a lack of exercise and rapid fatigue. Typical symptoms of Parkinson's disease are mainly visible in the muscles.
Some of the symptoms have already been mentioned in the description of dementia in Lewy Body disease.

The main symptoms are:

Trembling (shaking), especially of the hands at rest
Involuntary movements
Muscle stiffness
Tendency to fall

It is noticeable from the posture that people with Parkinson's disease often walk hunched over, with small shuffling steps. They often keep their arms stretched out along the body.

They have difficulty starting to walk and once they get going, they have difficulty stopping. They tend to fall easily.

The facial expression is often very flat, the so-called "mask face". Emotions are therefore difficult to read from the facial expression. Talking is usually soft and in one tone. There is also often an increase in saliva production and because swallowing is less frequent at the same time, there is a flow of saliva (drooling).

In addition to changes in movement, depressive feelings occur and changes in thinking can also occur.

If these changes are so serious that they hinder daily functioning, it is called overdementia. A number of studies have shown that 35-55% of people who suffer from Parkinson's disease also develop dementia.

In cognitive terms, there is mainly a delay in thinking and acting. Furthermore, there are loss of initiative, planning and overview problems.

Orientation in time, place and person often remains good. Memory also remains relatively intact, but the 'free' retrieval of memories may be disturbed.

With the help of helpful instructions, such as a photo, this generally still goes well.

Parkinson's disease is a disease that progresses slowly and cannot be stopped. However, medicines have been discovered that can (temporarily) improve movement. Cell loss in the brain causes a shortage of a certain substance in the brain, dopamine.

This substance is important for movement, among other things. The medicines can temporarily compensate for the shortage of this substance. However, when the disease progresses, the lack of dopamine becomes so great that the medicines can no longer compensate for it.

The medicines can cause psychiatric symptoms such as psychoses as a side effect.

In a smaller group of people with Parkinson's disease, dementia symptoms are prominent. This dementia resembles the symptoms of Alzheimer's disease. Often, the administration of dopamine will be stopped because this medication can also cause confusion and hallucinations.

The further the disease progresses, the more dependent someone will become on care. If the control over the body is disturbed, this can lead to physical complications.

For example, it can become more difficult to eat independently.

Unfortunately, people with dementia or Parkinson's disease often die from additional complications, such as pneumonia, urinary tract infections or cardiovascular diseases.

About Mariët

My name is Mariët.
I am a true "zeeuwse" (resident of the province of Zeeland).

Born (in 1982) and raised in the village of Borssele and since 2002 living in Goes.
I am married and have two lovely children. A son (2004) and a daughter (2010).
In 2001 I obtained my Nursing IG diploma via the Albeda College in Rotterdam, the training consisted of working and learning, I gained my practical/work experience in the then Nursing Home de Samaritaan in Sommelsdijk.
Since then I have worked in elderly care, of which about 15 years in homes for people with dementia.
During those years I have worked for various care organisations in Zeeland.
I now work in a small-scale home for 7 people with dementia. I have completed a training as a Specialised Nursing Psychogeriatrics, a kind of specialisation in dementia care, which means that I get even more satisfaction from my work than I did before.
I do my work with a lot of passion and pleasure and because my work is the best there is for me, I want to get others excited about a job in healthcare, working with and for people with dementia, by writing stories/statements/poems etc. on this page.
Working in a home for people with dementia (in short, a PG home) is challenging, moving and adventurous.
My website is
https://marietopzorgavontuur.jouwweb.nl/
I write blogs for Hersenletsel-uitleg.

Information about research on FTD:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4499854/

https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2019.00304/full