16 thoughts on ““But you don’t look like you have dementia…”

  1. Hi Kate
    That was really good as it just goes to show that we are not alone when the professionals and the lay person keep telling us we don’t look like we have dementia or they have got the diagnosis wrong. When I am told this I say I know but the consultant says I have. We keep going through the whole diagnosis process and then are told oh yes you do have dementia. Why do people think we would pretend to have dementia, especially when you have to give up a really well paid job to live on a small unemployment benefit . It doesn’t make sense. It was really good listening to people from different parts of the world with the same problem.

    • I’m glad it was helpful Lesley… and thanks for commenting. I was trying to find your email address to email you, and it was hiding, so now I have it again too! I’ll be in touch be email, hopefully soon, and if I forget, feel free to connect! Sending healing hugs and love to you, and I really hope life is not too tough for you now. xxx

  2. Wow, Kate that was great. I am so sorry that you all have to deal with this on top of coming to terms with being diagnosed with a life limiting illness. I can understand this must be so much worse when you get this type of response from the so called professional and experts in the field. Thank you all so much for your efforts in carrying the banner and being a voice for those who do not have one.

    Marianne Naughton

    • Thanks Marianne… my own doctors and allied health professionals have never been like that, it has been ‘friends and family’ and some of those working in the service provider sector who have not believed me (and this experience, as this webinar shows, sadly, is not unique to me)…

  3. Hi Kate and all DAI members involved in this webinar,
    I whole heartedly agree with Susan in her comments about “not fitting the stereotype”, but it’s also borne out of extreme ignorance of the syndrome and the devastating effect these words have on the recipient. Thank you all so much for allowing us into your (so often painful) experiences.

    I think it is attitudes like this that prevent people from getting a diagnosis, particularly if they are in the 40-60 age range and suspect that there are an awful lot of people who are undiagnosed.

    Would you have any advice for someone who suspects that something is wrong but are frightened of obtaining a diagnosis because of the terribly negative response from society?

    with heartfelt Thanks,

    Mandy

    • Thanks Mandy… the two comments that stood out to me are; “it’s borne out of extreme ignorance” and “I think it is attitudes like this that prevent people from getting a diagnosis…” Ignorance and unkindness causes such cruelty to other human beings.

  4. Thanks for posting this Kate. Maureen clearly had problems with her memory prior to her stroke but there was a general reluctance to consider that something was wrong even from the medical profession!

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