I have Posterior Cortical Atrophy, a rare form of dementia. It affects my senses, in particular, my eyesight. I used to work in social care caring for people with dementia, and now realise that, with the best of intentions, we were doing things wrong. The willingness of organisations to listen to us who have dementia is very much based on postcode. Alzheimer’s Scotland listens to us, and more importantly enables us to speak. As with all things NHS, their willingness to listen is “post codal”. One major exception, in my experience, is any Local Authority: they are very top down and all training is from professional trainers. This blog is my attempt to right this and publicise what people with dementia, and their carers, believe is the best care for them. After all, we live with it 24/7, “experts”, and other professionals, do not, so with the best will in the world, how can they know?

My posts will be irregular but please contribute and pass it on…. I have tried Twitter but all the posts overwhelm me, sorry

 

 

There are times when simple, or not so simple, actions, or sensory experiences can overload my brain and it shuts down. When this happens the best thing for me is to go and lie down in a quiet and dark room. However, I know in a day care setting this would be frowned upon as a waste of my time, and a waste of the cost of my care.

But, if I don’t lie down my behaviour would become challenging: swearing, irritability etc because my basic needs were not being catered for. This would eventually lead to exclusion, or worse  a chemical cosh.

I would like day care professionals to read this and learn from a person with dementia, not a sufferer! More on that in another blog.