What information should be provided at or after the diagnosis

we were at the first of many meetings at Newcastle University, looking at a Lewy Body Dementia project, which it us hoped will help people in future once they have been diagnosed as having the illness.

Many people have complained over the last few years about the lack of information they were given at the diagnosis, and although it's a diagnosis no one wants, there has to be a limit on how much information is given, and what information is given. 

Too much information can be disastrous the same as too little, so a balance needs to be found.

I suppose every consultant has vastly different ideas of what to tell the patient, but I also think they have a duty to tell us as much as we need, as we like it or not are going to have to find a way of dealing with a new life, starting with an illness we have done nothing to attract.

We have to deal with any medication which may be available to us, along with the side effects which can cause a lot of upset. 

Types of medication which may help you


Sometimes bad dreams and very graphic nightmares, and how carers can help us to deal with them when they happen

Falls and balance issues

Problems with certain Medical product as people with this form of illness are very sensitive to certain medications. 

We need to strike the correct balance so as not to over load or frighten people.

I suppose that we must accept that some people only require a little information while others would like as much information as they can get. 

So allowances must be made for all. 

 I do think that its important to have someone to discuss this information with, so that you get the correct answers to any questions, rather than being left to look on the internet where you may get conflicting answers.
If anyone has any ideas I will gladly pass them on to the team.


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