Old people aren’t mean

Why are you so patient with dementia patients?

As a child, I had a sick grandmother. We didn’t know at the time that she had dementia, for me, a ten-year-old girl, she was just acting weird. And it wasn’t until college, about 14 years ago, that I realised what we were going through. Both grandma, and we, her family.

Was the choice of studies – because you are a psychologist, psychotherapist, neuropsychologist – a consequence of your grandmother’s illness?

Yes, but not only that. I had many half-grandmothers, I fell in love with the elderly as a child. And I’ve always been fascinated with the brain. I connected the dots and looked after people with dementia or Alzheimer’s disease.

After graduation, I started working with the elderly, in private nursing homes, in day care homes and in residential care homes. I work with them all the time, activate them, conduct therapy and support families caring for the sick.

Who looked after your grandma?

My dad, his sister and my mum. So the whole family. My grandma lived a few houses away, but she came to us very often and spent many hours with us.

Grandma would act weird. I remember what I was thinking: she talks to herself, she says silly things, walks back and forth, smells like urine, puts on more than one pair of tights, dresses very warmly even in summer. At times, I was ashamed of her. We just thought she was old then. Ah, it’s just old age.

I remember, grandma got lost once, we all looked for her at night. We found her in a place she liked a lot, in the bazaar, where she always bought meat. We don’t know how she got there at night, so far from home. But now I understand why she went there. People with dementia often flee to their favourite places from the past.

I know a case of an elderly man who was found more than 200 km from home. He went to his home town. These people are very motivated in such specific situations, when they really care about something. They can stop a car and ask for a specific address very logically, because they are looking for e.g. their mum. They are very convincing, it is impossible to tell that something is wrong, that they are a very sick person.

And what is this dementia disease anyway?

First of all, dementia is not a disease, it is a set of symptoms of a brain disease. Dementia is stupor. That is, a set of symptoms that disrupt everyday functioning. It affects the areas in the brain such as memory, attention, speech, language, cause-and-effect analysis, understanding, learning, counting, language, judgement, orientation in place and time.

The process of disorders is caused by a disease, e.g. Alzheimer’s disease – the causes of which we unfortunately do not know – frontotemporal dementia, vascular dementia, which is most often related to blood flow in the brain and affects people who have problems with circulation, heart disease, and hypertension. These people most often experience various micro-strokes.

How do you recognise Alzheimer’s disease or other forms of dementia?

It is hard. One of the first symptoms is the loss of new information that the brain doesn’t remember. Then there are problems with finding the right words, difficulties with making decisions, being lost in time, then in space.

Because it is often believed that an old man by nature has the right to be forgetful or infirm. No, there is no such thing as senile dementia. The natural ageing process is not dementia, it is just a slowdown in information processing. If an older person – healthy, naturally ageing – remembers less or recalls slower, but remembers in an hour, two, or the next day, that’s fine, because the brain is still functioning properly.

What do you have to pay attention to?

Sudden absent-mindedness, confusion, distorting words or completely losing them, when someone says: give me this, this, this, you know, this thing for drinking from. They don’t remember it’s called a mug.

When somebody gets lost in a store they have known for a long time. Or when my father suddenly forgot the number of the apartment his daughter lives under, even though he had visited her many times. Sometimes families, when we ask them to describe the patient’s behaviour, recall such stories from years ago. This tells me when dementia may have started. And the family often miss it for various reasons.

If they hadn’t missed it...

The family should quickly go to the GP, talk about these difficulties. The doctor should refer you to a specialist: a neurologist, psychiatrist or geriatrician.

This must be a very good doctor to recognise that it may be a brain disease.

Unfortunately yes. I wrote an article that I hope will make it easier for doctors to diagnose. The family doctor should first order a laboratory test, for example vitamin B12 is very important because it shows whether something is going on or not. If something bad is going on, the GP refers you to a specialist who orders a head tomography, MRI, and more laboratory tests. And neuropsychological examination, in which, in addition to the assessment of individual aspects of memory – direct, operational, episodic, autobiographical, semantic, progressive – linguistic, learning, executive and visual-spatial functions are examined.

This will allow you to assess the functioning of memory, thinking, cause-and-effect analysis, executive functions – that is, planning complex activities. The examination lasts from one and a half to two hours and does not require a referral. And even if a person is in a very early stage, it will show if there is a problem. Because it makes it possible to distinguish the early signs of dementia from the natural ageing of the brain or depression.

There is no cure for dementia, but the symptoms can be slowed down. How?

It is impossible to cure dementia, but in the beginning the drugs work. Patients feel very bright, open-minded, they even feel that they have a more efficient brain.

How do these drugs work?

Procognitive drugs improve the flow of neurotransmitters in the brain. This results in better communication between the neurons and thus the flow of information. Patients say they think better, faster. Families see improvements – especially in the early stages. Things are different in the later stage. The key is combining drugs with non-pharmacological activities, because they are the best cure for dementia.

So it is impossible to cure dementia with drugs.

No, they just slow the symptoms down. But it is very helpful for the sick and their families and carers to function.

Water also helps a lot…

Water?

80 percent our brain is made up of water. Regularly drinking about 1.5 litres a day helps improve the brain. Sometimes you don’t even need to take medication.

Drinking water should be the first prescription the patient receives. Two months of regular water drinking are enough to have a better memory and generally slow down the processes of dementia.

Suppose the diagnosis is positive. What next?

The doctor writes a prescription and says goodbye. The family is left alone with this. They don’t know where to look for help. A drama!

And they should immediately get a handful of basic information on how to look after, where exactly to look for help. There is, for example, the Polish Alzheimer’s Association, it has a helpline and a support line.

And that’s where you have to look for information, because when you start searching the web for yourself, you will read about the worst cases and you will panic. Therefore, it is best to make an appointment with a psychologist and learn how to deal with the patient at specific stages. Before such an interview, I would advise you to write down everything that is bothering you, all the symptoms, so that you do not forget. I know from the families of patients that they need such specific advice. That’s why I wrote the guide “The Perfect Caregiver Does Not Exist”. It is for all those who feel lost in caring for someone with dementia and need guidance on how to deal with specific situations. They want to understand what causes the various unusual behaviours in the patient. They want to understand themselves and take the heavy burden of guilt off themselves that they are doing something wrong or that they should do more, or that they are not good enough. I also started a blog where I share specific tips and help people understand what is happening with the patient.

Perhaps the guide should be given to families who hear the diagnosis: dementia.

I’ve had this idea too, I don’t know how to do it yet, but I am knocking on various doors and eventually one will open. I would like the guide to be distributed by doctors, because I know from readers that it is very helpful and clarifies a lot.

In caring for the sick, you first teach the healthy what it is like to be sick and infirm.

Yes, I have designed and created special goggles that imitate the perceptual difficulties of people with dementia. You have to put on those low-light goggles and movement inhibitors on your legs and arms, and props that simulate tinnitus. In this way, caregivers learn what it is like to live with so many limitations. With such limitations, they folded their clothes, segregated socks and medicines. And they learned that these simple activities are suddenly difficult, indeed, sometimes impossible to perform. This allowed them to understand that when a sick person is unable to perform a simple action, it is not because they do not feel like it or because they are malicious, but because they are actually unable to do it. Those who have experienced it are more patient and empathetic as caregivers later on. They admit: now I know that when my father doesn’t know how to hold a toothbrush or a shaver, he doesn’t do it to spite me, he just doesn’t know how to use it. They find that these strange new behaviours are being forced by the diseased brain.

Because damage to the frontal lobes makes the sick person unable to move, begin tasks, pick up an object. It’s still hard to accept, but it’s easier when you feel it yourself.

Exactly, even with this awareness, it is still extremely hard to care for a loved one who is terminally ill, in addition, with a disease that is progressing.

What is worse, it is often 10, 15, 20 years of caring for such a dependent person: husband, wife, mother, father, aunt, uncle... It’s like being a guide and support for someone who loses basic life skills.

The condition of the caregiver is a permanent state of mourning. The caregiver constantly experiences that the sick person is losing some skill, e.g. my dad does not recognise me any more. Then I experience mourning. It is an unconscious process, but it is just like mourning the loss of a loved one.

The caregiver has to give up their own needs, dreams, and maybe their own life.

I don’t think so. It depends on how we perceive ourselves and our role.

If we imagine ourselves as the ideal caregiver who knows how to do everything best, is irreplaceable and must be available all day, week and year, then we actually have to give up our own lives.

Then I ask such caregivers, if they themselves are tormented, frustrated and unhappy, how are they capable of taking good care of the sick. I recall the aeroplane safety rule: first you put the oxygen mask on yourself, then you put it on your child. Because if we don’t put it on, we may not be able to help the child any more.

It is the same with long-term care. Impatience, discouragement, sadness, anger, helplessness are natural feelings in a caregiver. You have to learn to accept them. Our emotions are very important indicator lamps. They cause certain behaviours in us, which later give rise to remorse. Guilt makes us look after the sick person 24 hours a day.

And that is simply impossible.

I have no strength, I’m frustrated, exhausted, I have no patience, I will shout at my mother. And if I scream, another guilt is born. I try to convince people that even if they shout at their mum five times instead of seven, it’s already a success. It is important that the caregiver does not intentionally do it in order to take their feelings out on them, but out of lack of patience, but they do not want to do so.

That is why I titled the guide “The Perfect Caregiver Does Not Exist”. Because there is no perfect caregiver and no perfect daughter, no perfect son, wife or husband.

I explain to caregivers that they are still good people, even if they shout at the sick person or yank them. Even if they sometimes want to slam the door and never come back again.

And they must learn to seek help. Find someone to replace them for at least two hours.

Only two hours? Is that enough?

Yes, for starters. If the caregiver knows that they have two hours to themselves every week, this helps to keep them motivated for the rest of the week.

But caregivers often think: well, it’s selfishness, how can I go out for an hour or two, I have so many things to do. And when they go out, remorse appears. It’s a vicious circle.

I remember a gentleman who was taking care of his wife with Alzheimer’s disease. He was closed to help, because he can do it, he is the best, he doesn’t need any support. Even though he was very tired, frustrated that he did not have time for himself, that he had plans and could not implement them.

I taught him to change his mind. First, he left his wife at the day-stay home for two or three hours once a week. At first he decided it was useless for longer, but when he saw that it was good for his wife, he brought her there three times a week. And they were both very pleased. Using help is not our failure – and I often hear that someone who cannot be responsible reaches out for help.

Another big problem is resistance to nursing homes. We are under great social pressure that a sick family member needs to be cared for to death in the family home. The second stereotype is that nursing homes are dying rooms.

In one of the nursing homes where I worked, there were two ladies with quite advanced dementia. They sat on the sofa and talked. I didn’t understand anything, it was a flow of words, no syntax. And they nodded to each other, smiled and had a feeling that they understood each other perfectly, they grabbed their hands and patted each other. They were happy.

Because many nursing homes do not really offer good care, sometimes even none, it’s just a way of earning money.

That’s why you need to check such a home. Not to read on the internet about it, but to go there. And not for 15 minutes for an appointment with the director, but without making an appointment, for a few hours to watch. To see and listen to how caregivers treat the elderly. The served meals show perfectly whether human dignity is respected or not.

Can you imagine the director letting us in if we arrived suddenly?

If they don’t let you in, it may mean that there is something to be hidden, that they are not ready for spontaneous visits. A nursing home should be transparent, always open to meetings, conversations and visits.

The state does not help carers for bedridden and terminally ill people.

It’s a drama. There are not enough geriatricians, geriatric wards where such a sick person could be diagnosed. Caring for such people is often a private visit, which is very expensive. Yet as a society we are ageing.

In 2016, there were 6.2 million patients with Parkinson’s disease worldwide, and the forecast for 2040 is 12 million. And according to the data of the European Brain Council of 2010, the cost of treating brain diseases has doubled over the last decade. Overall, the costs of psychiatric and neurological treatment in Europe are much higher than those in oncology, cardiology and diabetes put together.

We are ageing, but we have better and better diagnostic methods, we diagnose much earlier, so we can slow down the symptoms of the disease earlier. When my grandmother was ill, there were no such possibilities, we didn’t know what was wrong with her.

Are you not afraid of old age?

I am not. I am very curious about it – how I will look, how I will behave. I am curious about the ageing process.

And if you get a brain disease...

…then I would like my daughter or some specialist to know my interests from childhood, e.g. what I played with as a child, and in adolescence, what music I liked, what pleased me – these would be elements of my therapy. Searching for the keys to the world of a person with dementia in the past is most important because it explains so much of the person’s behaviour.

Karolina Jurga - psychologist, psychotherapist, neuropsychologist, specialising in working with elderly people and their families. Author of the guide “The Perfect Caregiver Does Not Exist”. The creator of the blog PoznajDemencje.pl 

Author: Agnieszka Kublik

Illustration: unsplash.com

The text was published in „Wolna Sobota” a magazine of „Gazeta Wyborcza” on 31 July 2021r.