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Understanding Dementia

Dementia post it note

Dementia…it’s a word that is often accompanied with feelings of fear/anxiety. It’s a diagnosis which no one wants to hear and brings ideas of being unable to cope/live well or even of losing who you are.

Just over a year ago, my grandad was diagnosed with early stages of Alzheimer’s disease. Although this was not a surprise diagnosis, it was distressing for all his family and friends but most of all for himself. He was frightened of what this would mean and often became upset and tearful that he ‘would not be who he used to be’. At first, it was a struggle to reassure him, although I knew about and had a good understanding of dementia, it was difficult for me to reassure my grandad and grandma as it was frightening to me to think of what may come.

Dementia is a progressive illness, it will gradually worsen and the symptoms vary between every individual, meaning it’s hard to predict the effects. I knew that the journey would gradually become more difficult, however, this does not mean that my grandad will have less quality of life.

We’ve adapted to his needs; when he struggles to find the right words, we help him to find them and we stay patient, it doesn’t matter how long it takes for him to find them. We know we’ll be able to work this out together.

He began finding his own routine from morning to evening, one which he does not break from. We have looked at this from his perspective; how this routine makes him feel safe and aware of what will be happening at a particular time so we encourage him to follow this and we fit in around it.

I have always been keen to understand dementia, the effect it has on the individual and their family. Through my university studies, my job and volunteering I no longer feel anxious at the mention of dementia and I have been able to reassure my family and my grandad that’s it is not necessarily an illness which will stop you from living well.

My interest in this area has led me to now train as a Dementia Champion for Community Links, and I have successfully run four Dementia Friend Sessions to date. The aim of the sessions is to challenge the stigma and fear of dementia, to educate that a person can live well with dementia. I have trained staff to become Dementia friends and in developing new ideas at work I am more aware of the factors which would have an impact on someone with this diagnosis.

Dementia is an illness which can affect anyone and yes, it has its challenges and it affects the individual and their friends/relatives. But it is not an illness to be feared as with understanding and knowledge, people can live well with dementia. It’s about understanding how that person is affected and what their needs are to live as independently and well as possible. Most importantly, there is a great amount of support available to everyone, both the person living with dementia and their family/friends.

Useful resources :

Admiral Nurses : Call the dementia helpline on 0800 888 6678 for advice for carers.
Dementia UK Helpline: 0800 888 6678 E-mail: info@dementiauk.org www.dementiauk.org
Alzheimer’s Society: Helpline number on 0300 222 11 22 www.alzheimers.org.uk