Journal of Alzheimers Disease & Parkinsonism
Open Access

Abstract

Decoding dementia is not just about professionals researching and finding a cure. It is about providing information and support to carers. What I find is once a diagnosis of dementia is given, it is seldom the case that the family is given support from the GP. More often, people are left to their own devices. A common problem I find is people are given a diagnosis of dementia but not any details about the type of dementia. How is the family going to know what support to give if they are not aware of the exact diagnosis? Families and the person diagnosed require information which is easily accessible. Carers do not know what they don’t know. I know where to signpost people and do so, there is support available, but you need to know where to look for it. I have known of a carer looking after a loved one with dementia for two years with no professional help. How did they fall through the cracks? Decoding dementia for me is about supporting carers to know, what they can do to support their loved ones. It’s about reducing the stigma of dementia. Carers need to be told at diagnosis what the prognosis is and that there are stages. Carers are not told about what kind of symptoms to expect; all they hear about is memory, yet there are other areas affected and behaviours that they should be made aware of. Put yourself in a carer’s shoes.

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