Milan Mores and I set up ARBD Awareness just over a year ago because of our experience of the reaction from people to the illness Wernicke’s Korsakoff’s syndrome. On a daily basis we were dealing with people in the medical and social care professions as well as families and friends of those affected. The reaction ranged from a total lack of knowledge to contempt for people who had brought an illness upon themselves. What concerned us most were the professionals who supposedly knew about Korsakoff’s syndrome but treated patients, well, wrongly. This ranged from accepting confabulation as reality and reacting to it, to a belief that they knew all there was to know about the illness.
Over a period of ten years Milan and I supported over one thousand people with alcohol related brain damage (ARBD). When we started Wernicke’s Korsakoff’s syndrome was a phrase new to us as were the terms confabulation, retrograde amnesia and The Loop. Our most pressing concern was that Korsakoff’s was classed as a dementia whereas we never saw it that way. We understood that there were similar symptoms with a dementia but where we differed was in the knowledge that given the right programme a person could make progress depending upon the level of brain damage that had incurred. We felt that everyone affected by this illness should be given the opportunity to make progress. One of the problems of classing Korsakoff’s as a dementia was that people were placed in dementia care homes. The care of a person with dementia is totally different from a person with Korsakoff’s and it is our view that many people will have deteriorated due to this lack of knowledge.
We accept that there are few care placements in the UK for people with alcohol related brain damage and at present people with Korsakoff’s will continue to be placed in dementia care homes. With some knowledge and training staff in dementia care homes can still make a contribution towards improving a person with Korsakoff’s syndrome. That is our mission. We know that to achieve our goals we will need help from politicians and legislators. We just need people to see what we see.