Hosptials and Dementia

Dementia and Hospitals

This was written a few years ago but it’s still very relevant today  

I do feel that hospitals can be very frightening for most people, but when Dementia is added it becomes a nightmare for those with the illness and their carers.

I have not had any experience of dementia in General Hospitals, but in 2001 when I was taken in to hospital with Viral Pneumonia, and I experienced something that was enough to put me off going near a general hospital ever again.

This all started when I was admitted at tea time and was given an unmade bed. Around an hour later I was given a drip, and was then told by a consultant that I would be having an x-ray. At around 11pm, and still without a made up bed, I was taken for an x-ray, after which I was told that I could go to bed.

 However when I returned to the ward there were no staff present, so I had to attempt to make the bed on my own, with the drip in on arm. To add insult to injury, the next morning, the young staff nurse complained to me about the state of my bed, and said something like; I should have found a member of staff to make the bed up.

Later on the second night, I was then transferred to a different hospital where they dealt with chest infections, and after two days noticed that the lady cleaning the toilets was also rushing back to serve meals? This did not give me very much confidence, as the toilets were dirty, and I had to clean one before using it.

The baths also had air beds in them, so you had to take them out to get a bath.

I complained to one young doctor who said that I would possibly get better faster at home than in those conditions.

A few weeks later the same hospital was given warning that it would be closed if it was not cleaned up. But by then I was told that I had released myself from the hospital so the doctors did not want to know anymore. It took a long time before we were able to explain it all to our own GP

So in more ways than one I was lucky that I did not have dementia at that stage, as I cannot remember how I managed to get my pyjamas on that night. So just imagine what would have happened if I had dementia at that stage.

Many hospitals are still not dementia friendly these days.

Dementia causes many problems when a person is admitted into a general hospital, and therefore the carer should always be consulted.

We hear a lot about when someone is admitted to hospital or a nursing home, and this is usually made worst by the fact that neither, the nursing staff or the doctors understand that the person has dementia, or what dementia is. Sadly, this is lack of training, and this has to be looked into before things can get better.

 There are also many posters and signs on the wall which act as distractions, leaving us struggling to find the right information, so it is very hard to find your way, and this is made worse by the lack of understanding staff, who are always in a hurry to do something else, and don’t really want to be involved in helping someone with this disease, as we are in many cases treated as a liability.

Yes we may make mistakes at times, but this is caused by something, which is out of our control, and is not deliberate.

Getting lost in unfamiliar surroundings is very normal and expected when people have this illness, so please don’t send someone to a different department on their own as they may well panic or never get there.

Many hospitals are not dementia friendly, as all the corridors, and doors are the same colour, and many of the signs are in the wrong place. Many of the wards look the same, so it is easy to get lost or go to the wrong section.

Sometimes the toilets are difficult to get out of due to the types of locks and the very large mirrors, which give you the idea that there are two of everything and it is sometimes difficult to work out what taps are real and which are reflections.

It is common for people with dementia to see things which are not there for others to see? We see things in floors and wall decorations which can relate to something from the past, or from common nightmares.

We just have a disease, but we are normal people, who just happen to have a brain that is doing its own thing. However, to most people we look normal we still have two legs two arms and a head, but that is because dementia is not something that can be identified the same as a broken arm or leg, it is all in the brain.

As many people have said to me in the past, “You don’t look as if you have anything wrong with you”. Do we need to walk round wearing a band on our heads, saying we have dementia?

Imagine if you were to lose the ability to say the right word or understand what is being said, e.g., when on holiday in a foreign country where you don’t speak the language.

You may feel frustrated, angry and look for help, perhaps someone to interpret for you, or help you find the right words.

You might respond by not speaking at all and withdrawing into yourself or avoiding situations where you have to communicate with people.

In some cases this is what happens in dementia, the only difference is that, it is your “own language” that you do not fully understand, and that is upsetting and stressful, especially when people think you are being rude or disrespected because you use the wrong words at times

A person with Dementia may also feel under pressure because they cannot cope, with different and unfamiliar areas, as well as they used to, but this is because their brain is taking longer to process the information in front of them.

Many already also have poor hearing which can be made worse by their dementia, and they may not understand clearly what is being said to them, some people become frightened by too much noise or like me find that their hearing has become acute, which can at times make life unbearable.

Next time you have a hangover, just think that the extra loud noises you struggle with after a party are for real in those with dementia, and it is not due to alcohol.

Some people have Lewy Body Dementia etc, and struggle with very graphic nightmares, and it’s difficult to work out the nightmare from reality during the night.

If someone is going through one of these, please don’t get too close, in attempt to wake us up. Stand aside and speak to us quietly.

Do not attempt to shake us or get too close otherwise. You could become part of the nightmare and could end up being hurt.

We don’t want to be accused of assaulting staff when we are not in control, so please take this on board   

There is one factor that we all agree on, and this causes more distress than anything else and that is noise, so please try to find some a place where there is no background noise, such as people talking, Radio or TV noise, as this is distracting.

Many of us develop daily routines as a way of keeping control of our lives and independence and if these are stopped or interrupted we may get frightened, because we are not in control, so please allow us to stick to these routines, otherwise everything falls apart, and we forget things like taking our medication or getting washed.

Treat the person with the respect that “you” would expect from others, as like it or not we are the same as you, but we are struggling to come to terms with this illness as well as losing control over our lives, and many tasks that were easy are now very hard, if not impossible to cope with.

Many people with dementia also act in very different ways, this is due to the fact that there are so many variations and no two people are the same, or have the same symptoms.

Treat the person as you would have done, before the dementia, we may have this illness, but in many ways we are the same as you, we are all human.

Don’t patronise us by trying to answer the questions you have just asked us, give us a chance to answer them, as in many cases we just need time to process the information before giving you the answer.

Try to speak clearly, carefully and slowly and where possible, face to face, so that we can understand you, and attempt to pick more of what you are saying to us, as your accent may be hard to understand, and like it or not, trying to understand a strong accent, as well as the questions, is difficult for anyone with dementia.

Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way, then we are accused of being aggressive.

So please do not discuss our problems with anyone else while we are there; as it is hurtful and disrespectful, we have ears and a tongue, so we can answer back ourselves.

Many lose the ability to read properly and understand what is written down in front of them, so they may need someone like a carer to explain things. So please do not expect a person with dementia to understand something like a consent form, because we may as well be signing our lives away.

This also means that when a consent form needs to be signed, it should be done in front of the carer, who can explain it all in normal language, in other words, not medical jargon as we still get these days

Accident and Emergency Department,   can be frightening these days, when you see the drunk and abusive patients sitting around.
To me these people should be made to pay for treatment if it happens on a regular basis, and they should be banned from entering any hospital if they have been abusive.

I don't cope with drink and abusive people these days as I panic and want to get away from them, and I guess that I am not the only one with this problem.

Allow plenty of time for the person to take in what you say and to reply

Try not to confuse or embarrass the person by correcting them bluntly

Use questions which ask for a simple answer

Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.

Allow plenty of time for the person to take in what you say and to reply

Try not to confuse or embarrass the person by correcting them bluntly

Use questions which ask for a simple answer

Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.

Actions Speak louder than Words

Talk about familiar people, places and ideas

Use the surnames of the people you are talking about, instead of “he or she”. It will remind the person of who you are talking about.

Use facial expressions and hand gestures to make yourself understood.

You can give support by offering practical help, e.g. with shopping or simply by taking the time for a friendly chat

Don’t Assume that you know everything about dementia, if you really want to know how it feels to have this illness, ask us, never assume that you have all the answers, because you could be totally wrong..

There really is too much to learn with this illness and when you consider that there are over 200 variations of the disease, is it any wonder that people don’t understand it.

 Hints to help you communicate with someone who has dementia:-

Be Calm, because if you get agitated you will only make things much worse for those living with the illness

Face the person, speak clearly and slowly

Make sure that you have their attention by gently touching their arm and saying their name

Use short simple sentences and say exactly what you mean

Try to get one idea across at a time

Allow plenty of time for the person to take in what you say and to reply

Try not to confuse or embarrass the person by correcting them bluntly

 Use questions which ask for a simple answer

Don’t ask questions which test their memory, e.g., who am I? or what did you say yesterday.

Talk about familiar people, places and ideas

Use the surnames of the people you are talking about, instead of “he or she”. It will remind the person of who you are talking about.

Use facial expressions and hand gestures to make yourself understood.