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Tuesday, November 1, 2011

Norm Mac Namara (Uk) affected with Early Onset of Alzheimer's Disease, sharing his views on Dementia Awareness for people under 60 also..

"So much yet to do but it’s coming!!

When a person has memory problems we need to catch them early on. Many people like GP`s and professionals ignore the early warning signs and then it takes a long time to get a diagnosis. We need an early diagnosis. If people are young, under the age of 65 even many GP`s say that they can`t possibly have dementia because of their age.

The first person who was diagnosed with Dementia in the early 1900`s was only 55yrs old. Many people with memory problems will not admit to them because of the stigma attached to dementia. People need to talk more openly to their friends and family and the public need to be more aware then this will reduce the stigma. Years ago you couldn’t mention the word cancer or HIV, now, because of media coverage ECT it is spoken about openly. 

When a person is diagnosed there needs to be an information pack given to them, only with the relevant information on about help, services, cafes, Dr,s ect and not pages and pages of numbers that are totally irrelevant to them. Its devastating enough hearing what is possibly the worst news of your life, because let’s make no bones about it, at the moment it’s a terminal disease and there is no cure. If it’s not bad enough being diagnosed with dementia, it`s even worse if you aren’t given any support. It wouldn’t happen with any other terminal disease!!

We need more memory clinics, more memory cafes where people can come along and get support and realise that they are not on their own. They won’t be judged.

We need carer and dementia groups in separate rooms but in the same building at the same time. We need to ask the dementia sufferer what they want and not what you think they want. Don’t ignore them, they need a voice. Sometimes a dementia sufferer cannot speak but there lots of other ways we can communicate. We need carers, Dr`s and health professionals to take their views into account. Don’t assume things. When you have met one person with dementia you have met one person with dementia as everybody is so different!!

When they have hospital appointments let the carer into the room, a person with dementia needs someone who is familiar to them especially in an unfamiliar place. This will lessen their fear and agitation.

The age for nursing homes, day centres and warden controlled flats need to be dropped. At the moment its 55yrs to 60yrs and over only. If you had cancer they wouldn’t say they had nowhere for you because you were under 55yrs old. At the moment they are trying to get Tesco, Asda ECT (UK) to give dementia training to their staff so they can recognise someone with dementia if they are at the till and acting differently. So that it stops an unpleasant situation arising. This should be rolled out across the public sector and the likes of the Tourist industry ect.

The more people we can get to talk about dementia and understand it the more changes there will be for the better. All this needs to happen and happen very soon, this is the political side of the illness but no less important than any other side of it. The difference is, people like myself who ACTUALLY HAVE A DIAGNOSIS are now standing up and shouting about it, we are shouting about the changes we want, and I am convinced that if we shout loud enough, change will come, please keep the faith my friends, change is happening, of that I am sure.

Best wishes, Norrms and family xxxxx"

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