Pilot Decision Making Tool for GP’s (UK)

I got word recently that there is a pilot decision making tool for GP’s in the UK going out this year. This is to aid Dr’s to make a diagnosis in dementia in younger people. I have looked at a copy of the tool in question and its amazing.

I think back to how I got diagnosed and what a fight I had to get anyone to believe that there was anything wrong because of my age at that time. 45 …… Stress and depression were bantered about and although I was under stress with my job I knew my signs and symptoms weren’t caused by stress.

This tool is a long time in coming and I am glad its here to help new patients my age. Hopefully it will help Dr’s not put everything in a box as well.

At the moment if I have to see my Dr and I do try not to, the first thing they say is ” How do you know what you have is nothing to do with your dementia?” As if to say, now when you have anything wrong its the dementia’s fault and we can’t help you!!!

This response is very frustrating and it takes all my effort not to walk out and never go back for this is what I really want to do. Last time I went, they blamed the symptoms of my menopause on the dementia!!! What!! Lol!! Then they took note when I told them what my symptoms were.

I have to say on a positive note that the nurses and nurse practitioner are fantastic and I usually see Sue over the Dr’s any day. Sue always asks how I am coping with my dementia after i have spoken to her about whatever I have gone there for which shows she cares.

Hopefully this new tool will help my GP’s as well.

(The link to the tool is here https://www.youngdementiauk.org/gp-decision-making-tool

There is a feedback survey too on the webpage & all comments would be gratefully appreciated so the final version of the tool can be made the best it possibly can be)

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Who Am I

This is the post excerpt.

My name is Tracey and when I was 45 I was diagnosed with early onset of Alzheimer’s Disease and Posterior Cortical Atrophy which is a different kind of dementia. I was fighting for nearly two years to get anyone to believe that there was anything wrong with me, so it was a relief to get a diagnosis.

I used to be a qualified nurse, I first worked on a busy ward in a hospital before going out into the community where I remained until I retired last May, 2016. I knew something was wrong, when I went to see a patient, before my fight of getting diagnosed, and wrote gobbledygook in his notesĀ and didn’t realise and a colleague told me. And other things were starting to happen, like getting lost on the way to work, or losing the car.

Soon after my diagnosis, I stopped driving as it became too scary for me. The PCA part of my dementia tends to hide things, its affects my spacial awareness and perception of things. The buses where I live as very frequent so I am lucky.

The dementia’s give me a lot of problems which I work through and they don’t stop me from doing something I just adapt.

I don’t get hungry or thirsty, so I have breakfast with my tablets and I eat again about 18.00 0r 19.00 hours. I have an alarm in my kitchen which I set every hour and a half to remind me to drink. It’s in the kitchen because I then have to go and switch it off and then drink.

At times I have had to relearn old skills which I have lost, and I have done this by perseverance and not wanting to give up. Using the computer and cooking are two skills I have had to relearn.

I call the dementia my alien. The black entity that strives to get hold of my brain. Well its not getting it without a fight. I am worth so much more.

I write a blog because I forget so easily. So its my way of keeping a memory and hopefully it might helps others. I write poetry as well so that will be shared and also take lots of photos. Life is precious and we need to fight to keep in it. I try and keep positive because its heaps better than being negative. Plus I always see the dementia as being that negative energy and light always overpowers darkness.

By fighting each day, I will prevail.

I have four rules of thumb : –

  1. Adapt – I can’t always do the things I used to be able to, so I adapt
  2. Try and not stress about things I can’t control
  3. If a bad day occurs and we all have them, then there is always tomorrow
  4. Always, always try to keep a sense of humour, which is the most important.