Dementia Centred

By Ailidh Aikman

September 12th, 2018

What it's like to live with dementia

Families and volunteers are often at the forefront of support post diagnosis and can experience first-hand how the lack of understanding can have a detrimental impact on the quality of life for both them and the person they support.

DSDC has been involved in a number of projects focusing on providing informal carers and volunteers with the skills they need in their caring roles. Through evaluations DSDC is aware how much of a positive impact these workshops can have on families supporting someone living with dementia.

Recently, DSDC was privileged to meet a workshop attendee’s husband, Ian, who has a diagnosis of dementia. Ian felt so strongly about the positive impact the workshop has made to his, and his wife’s, life that he gave a short presentation at one of the workshops. Ian has kindly allowed us to share an excerpt of his presentation:

   The training you will receive today

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   gives you an understanding of what is going on in the mind of someone with dementia and how their minds work

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   as opposed to learning what dementia is and how it affects the brain.

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   My wife attended this seminar earlier this year and I passionately believe that this training has enhanced my life

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   as my wife now realises the mistakes she had made whilst caring for me.

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   These are some of the notes she made at the training

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   speak slowly – ask do you understand

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   clutter free and light

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   create a den

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   do not take things away from Ian

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   let him do things that he can

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   taking things away – not good or helpful

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   person with dementia – their behaviour makes sense to them.

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   There were many positives that came from the training and we have now created a light, bright, airy and relaxing home which benefits both of us

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   and I now have my den where I can retreat when I feed the need to get my head together.

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   I am now actively encouraged to take part in daily activities on the days when I am able to do so

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   such as preparing vegetables a task which I enjoy and which I am good at.

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   We also make more effort to go out which is still difficult for me as I find noise and crowds difficult to deal with.

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   Please do not stop us when we are irritating you by taking too long to do something.

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   Our sense of achievement in completing a task is worth more than a little extra time.

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   Noise makes my head spin and causes confusion so much so that I cannot think or communicate.

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   Noise can be generated from people, TV, the radio or general background noise that most of you ignore.

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   My perception of a crowd will be greatly different from yours.

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   To me a crowd could just be 2 people walking towards me down a street.

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   Add to this general noise and I can be in a state of panic.

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   Having had a stroke in the past does not help this situation

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   and I’m sure I am not the only one who has been dealt the double whammy of dementia along with another health issue.

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   If we do keep asking the same question over and over again please try not to show your annoyance or displeasure as to us every time we ask is the first time

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   My biggest bug bear is one which I have been complaining about for years

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   and that is people talking so fast that I cannot comprehend what is being said and I switch off.

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   The consequence of this is that people no long talk to me but to my wife even though what they are talking about concerns me.

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   I also find that in general conversation with friends the same situation occurs and I feel left out of the conversation.

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   Society in general needs to understand that even though I have dementia I can still understand what is being said if you have me a chance to take on board your comments.

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   I find I have to continually remind people to slow their speech down

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   and eventually I give up as they lapse back to their normal speed.

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   Please remember that someone with dementia is still capable of understanding you if you talk slowly and they still have a lot to offer from their life experiences.

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   I feel that all carers whether family carers or professional carers should be able to undertake this training so that they can understand what goes in in the mind of someone with dementia.

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   Please do not underestimate the value of what you will hear today as it is the most comprehensive and meaningful training we have received in understanding how someone with dementia thinks and feels.

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   This is just a small snapshot of what it is like to live with dementia

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   to all you carers here today can I just say a big thank you to you for all that you do in caring for us.

The DSDC is running free workshops for family carers and volunteers at their offices in Stirling. For more information, and to book your place, contact us at dementia@stir.ac.uk or 01786 467740.

Thank you to Ian, and his wife, for sharing their experiences.

Categories: Carer Training