The individual vs the science

5 thoughts on “The individual vs the science”

  1. Sorry, having dementia and having worked within the dementia care sector, ie real life, you are wrong. There are are over 100 different types of dementia, eg I have PCA, and what works for one person will not work for another. We, with dementia, know what works, ask us individually not en bloc.
    One does not need to use and waste precious academic resources to study people with dementia as a bloc, care givers should ask each individual.
    I see this as an excuse to find and spend precious research money. Those of us with early onset dementia should at least be asked. I go further and am doing research, funded by a non academic funded (surprise) to,show,that we can and should do it.

    1. Thank you for your comment. I think we have to agree to disagree on this point.
      There are not 100 different types of dementia, there are ~15 clinical types and 4 proteins for dementia, plus some additional genetic types. So, what works for those clinical types of proteins will work for most people – maybe not everyone but for most. But to say that what works for one person will not work for another, is not correct, in my opinion.

      However, I agree with your point that people with dementia should be involved in the research process. Absolutely! In fact, this is already done and all our research projects involve either carers or people with dementia. It is clearly important that the scientific research conducted is relevant for people with dementia.

      I don’t agree with your notion that research money spend on ‘group studies’ is wasted. Actually, this is often the first step for us to investigate whether the effect or therapy we measure is real and effective. Only once this has been established one can tailor it to the individual – which is exactly the point I made in my blog entry.

      1. First; can you see that us with dementia should be able to first, be actual researchers, even if not “qualified”, meaning giving us funding. Second; do you think we should be asked what the priorities in research should be. Also, you are doing medical research, which is where the big bucks are (any cure etc will give Big Pharma huge profits). I want the money to enable those with dementia to decide priorities and to enable them to do what they want as individuals , not what group think says. Carers on the ground, like I did, can see what is effective to a person without relative strangers altering the environment.

      2. I am not sure you are aware of this but in fact, those opportunities already exist for the public. For example, see the following weblinks:

        Just to say we involve people with dementia or carers in all our research projects, so that it is research with them not for them. Finally, none of my research is Pharma funded, instead, we are supported by the government and charities on projects which are based on the research priorities suggested by people with dementia, such as:

  2. PS; I know I can be a pain and don’t use words wisely, which is really annoying as I used to be a good wordsmith, but I do enjoy discussing dementia with others, sorry.

Leave a Reply