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.