It’s time to tell the truth about dementia-By The Purple Angel founder

    1st January 2018 | By | 2 Replies More

    Things you always wanted to know, or should know about dementia, but were too afraid to ask and healthcare professionals are sometimes too frightened to tell you to tell you.

    Those with dementia MAY, and I have to STRESS, “” MAY “” show some of these symptoms

    Confusion and repeated questions are very common; please remember they are not doing this to” WIND YOU UP”. Every time they ask a question it is the very first time they have asked it, according to them.

    1. Swearing and Anger; even though they may have never have sworn in their life, they just like you will have heard people swear many, many times. So they know the words and are very familiar with them. Try not to be so shocked, this may be a form of release because their inhibitions have changed.
    2. Inhibitions; some may start to walk around completely naked in front of others with no conscience whatsoever, they may also start to speak their mind and say exactly what they are thinking and feeling. They may be a lot sharper in tone and lose their temper quickly. This is all born out of frustration.
    3. 4. Violence; this is a tricky one but has to be spoken about, even the mildest mannered of people may lash out at loved ones and strangers. They may bite, scratch, nip punch, spit at you, kick out or worse, please remember it’s not them, but the disease.
    4. Incontinence; believe it or not on diagnosis many doctors and medical staff don’t raise the subject. Yes it does happen and for those affected it can have a bad impact on everyday life. Generally incontinence starts with small accidents, small damp patches etc and increases. Please remember the signal from the Bowel and the bladder has been disrupted and the person living with dementia has no idea that the need to ‘go’.

    In all honesty, if they KNEW what was happening they would be MORTIFIED as would you, SO NO NEED TO CHASTISE AT ALL!!

    1. Frustration; Try to imagine you have this disease as in Lewy bodies, and knowing there is no cure, no remedies, and the chance is, you will forget ALL that you hold dear but you can do absolutely NOTHING about it.

    Wanting to scream and shout is a huge understatement and why it often happens for no apparent reason.

    1. Speech; the loss of coherent speech is so familiar in some people with dementia.

    One of the most common is having a conversation with you that makes absolutely no sense whatsoever to you. Remember, it does to them.

    Listening and patience is so important. It may be possible, if you listen carefully, to sometimes, pick out words  such as “Thirsty” “Hungry” or “Painful ” and work from there. This could help you understand a little more.

    1. Outbursts; A very important one, this can be caused by noise, or life, in general, being so busy around them, supermarkets shops etc, the volume of peoples voices is sometimes magnified a thousand times to people with dementia so its sounds absolutely deafening causing the person with dementia to shout SHUT UP! Or worse!! Sometimes causing them to run out of the shop and try and escape to only they know where.
    2. Wandering; the most important thing to remember is, people with dementia never get lost. They know exactly where they are going. They just haven’t told you! They will often try all sorts of tricks to get out of the house, and please don’t be fooled into thinking because of their age or frailty they can’t get far. No one knows where they get the strength from to walk such distances but they can, and please don’t forget they have bus passes and can use them. We had a lady from Torbay who was found in Scunthorpe thanks to her bus pass; never underestimate those with dementia.
    3. Hallucinations; hallucinations are not dreams or night terrors. Let’s get that out of the way first.

    Hallucinations are usually connected with those who have Lewy Body, but people with Alzheimer’s and particularly vascular dementia because of lack of oxygen to the brain will, or may suffer from these. I will NOT apologise for using the word suffering because if anybody has them like i myself do believe me they are suffering!

    Day or night these can happen, it may, to you, appear they are talking to themselves or wanting to chase people.  In some cases they will kick and punch as if shadow boxing; you will not be able to see who they are doing this to? But believe me; it is very real to them.

    1. Night Terrors; Imagine your worst fear being played out right in front of your eyes. imagine the horror unfolding in front of you, piercing screams, grotesque faces and being`s, clawing at you, biting you, then multiply this by 100,000 and you have a night terror. Also, imagine not being able to wake from this as it seems never ending.

    Then imagine this every 30 minutes of every night of every week? Hard I know but this is how bad it can get.

    1. Feelings. This is a tough one, but i have seen with my very own eyes the hurt it brings when you may visit a loved one and they are holding hands, or have arms wrapped around a complete stranger in a care setting and don’t recognize you. You may well have been with this person a lifetime but please beware, this happens more regularly than some places care to admit.
    2. Spatial awareness; is the person stumbling? Staggering like they are drunk for no apparent reason? Do they fall going upstairs” as well as downstairs?

    Banging their toes on doors, beds etc? Are they missing the step down on the pavement, or more importantly walking into the road with no fear of oncoming traffic?? This is because what you see they don’t, once again the signal from the eyes to the brain is distorted and this can cause the person with dementia to see things very differently and miss the most important bits, very similar to having blind spots for all you drivers out there.

    1. Loss of appetite; because of that signal to the brain from the stomach and eye`s not working properly some with dementia may want to eat more as they have forgotten they have just had their meal.

    “What if they eat a lot? I hear you cry?

    “They must feel full I hear you say” but how can they feel full if the signals not working and they still feel starving?

    So you see it’s not their fault, they are not at fault at all because of this awful disease.

    Then there is the quandary of those not eating or drinking enough. this can be caused by many things but sometimes it really is just a case of putting water into a yellow cup or container, placing a small meal on a yellow plate instead of white and doing the same with tea and coffee.

    People with dementia can sometimes see right through clear glasses and don’t see what’s in front of them, we have proof this works on our other website

    1. Sun downing; I would personally put this on the school curriculum if I had the chance

    Sun downing is easier to understand than you think, it does exactly what it says on the tin! As the sun goes down the person with dementia gets worse, becomes more confused, more agitated and more frustrated.

    So to help the patient and the healthcare professional help, diagnose and work together change all appointments with Drs, dentist, podiatrists, consultants etc, to morning appointments. So the person with dementia is in a better place, it’s a lot easier on you to manage and the Drs etc don’t have a hard time treating then either, you see? It’s not that difficult is it?

    These are just 15 points of what you may come to expect after a diagnosis of dementia.

    I do wonder at the lack of understanding, the myths and the honest hard truths and the avoidance of transparency. Surely it’s better to work with the patient and loved ones, so that as the disease gets worse the people around are well prepared and armed ready to deal with it?

    But what I do hope is you all read this, share this, copy and paste this and print it out and put it in every Drs surgery in the UK /World for all to see, it’s not a state secret, and those who don’t want to know won’t read it

    Very best wishes, Norrms Mc Namara (Diagnosed with dementia 9 years ago and trying to help)

    The Purple Angel was born on 12th January 2012. It was formed as a steering group to try and make Torbay the first Dementia Friendly resort in the country.

    Norman McNamara a resident of Torbay, Devon, UK was diagnosed with dementia at only 50 years of age. Whilst out shopping one day he was rudely spoken to by a shopkeeper and decided to change the way people see dementia and treat others.

     

     

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    Category: Adult social care services, Alzheimer's Care, Dementia Care, Dementia News, Dementia Training

    Comments (2)

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    1. Norrms Mc Namara says:

      There are so many across the world with dementia, not only on the speaking circuit, which in am not anymore would disagree with this

    2. Donna StClair says:

      Reflecting on one’s own behaviors and thoughts is a process known as “metacognition.” It is a higher level brain function. By the time someone is diagnosed with any form of dementia, his or her cognitive capabilities are already so impaired as to render the process of metacognition impossible. For example, somebody who is actually experiencing sundowning, could not possibly be aware of his or her experiences, let alone describe, write, or speak about it. So, basically, what I’m saying is this: Mr. McNamara and others who are on the speaking circuit as dementia sufferers obviously are afflicted with something–but dementia is not it. Ask any neurologist to comment.

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