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

  1. Hi Kate Thank you for enabling me, a health professional for 40 years, to understand living with dementia from a personal view. 36 years ago I would visit my grandfather, Alf in the Glenside Mental Institution, Adelaide, and vowed I would never work with people diagnosed with dementia. Your insight has created a light bulb moment, bringing back all the love I had for Alf, all the fear & discrimination that I have portrayed and now I want to know more and I am not frightened. Thank you Maxine

    • Dear Maxine, thank goodness we are no longer routinely packed off into mental institutions, although locking us away in secure units is not really mch better! But thanks you for your comments and feedback, and I am so glad you no longer fear dementia. Kx

  2. Hi Kate & Dai members.
    Thank you for sharing. This has been very informative. This must be incredibly frustrating for you to experience day to day. I admire your resilience and your philosophy to educate us from the point of view of a person experiencing the disease instead of from what some believe to be the science. All medical professionals should have to do a session with you all as part of their training to shift the focus. Keep up the good work. I am doing the Understanding Dementia Mooc and have a much better perspective on Dementia and more importantly how to provide support and care to a family member with the disease.

  3. Thank you Kate. I found the webinar very interesting as prior to starting MOOC I had very limited understanding of dementia. Lack of education fosters the creation of stereotypes. For years dementia has been viewed as a condition that affects old people and to this day I believe remains a common belief amongst the general public. When someone diagnosed with dementia does not fit that stereotype, I think it becomes confronting for many people as they don’t know how to respond and often find avoidance the easiest pathway. I believe governments and the health sector need to do more in terms of raising awareness and ongoing research. Your work along with others diagnosed with dementia is a vital part of raising awareness and challenging myths. The louder the voice….the more that is heard… and the hope that one day change will come…resulting in improved treatment and care for those affected by this misunderstood condition. I don’t have dementia but having been diagnosed with severe arthritis at 18 I had to use walking aids for mobility. Strangers would often stop me to ask why I needed a stick and when I answered the reply was often ‘you poor thing you are too young to have arthritis’.

    • Thank you Danielle… all voices help this break down this stepeotype, especially so when it comes from people without dementia. Sorry to hear about your arthritis too, I now understand the dreadful pain associated with it, and feel very lucky indeed not to have developed it as a younger person. Take care x

    • Thankyou Danielle for your comments with which I whole heartedly agree. I am very sorry that you have been diagnosed with arthritis it must be very painful and debilitating. I admire your fortitude and wish you well and Gods every blessing.

  4. Thoroughly enjoyed your webinar Kate ! It strikes me that many in the medical profession do not have the knowledge, insight and skills into how to communicate with those diagnosed with dementia ( and other life limiting conditions) , and would be good if they were taught this in their medical schooling! Having an understanding medical and support team would go a long way in enabling those receiving this diagnosis to maybe deal with it with less distress.

  5. 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

  6. 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)…

  7. 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.

  8. 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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