“But you don’t look like or sound like you have dementia”

burdenThis is the most common thing I hear from people about my diagnosis of dementia, and is possibly the most common others with dementia talk about. Even some people with dementia say it to me; yes, even when they themselves know how insensitive it is to hear it said. It is an odd conundrum, and one that we all have our own way of dealing with. It is also for many of us, especially in the first few years of hearing it, upsetting and feels quite like an additional burden we have to deal with. No one ever accused me of not having other illnesses, and it is indeed mildly disturbing still  that people with dementia constantly have to deal with this.

The late Richard Taylor used to carry a letter from his specialist doctor in his wallet, and even then was often accused of faking the letter. Christine Bryden sometimes shows her own brain scans in her power point presentations, calling it her ‘credibility slide’, and even then has reported having people accuse her of stealing the images! I have regularly been accused of lying about the diagnosis or my doctor being wrong, and now always simply suggest the person comes with me to my next neurologist appointment and offend my doctor themselves. Often, it is one of my doctors own colleagues!

Some people say, if you happen to remember something during a conversation, “see, you don’t have dementia after all!” This is also another reason why we need to get rid of the myths of dementia, and the constant impression that is all about memory loss. We have Memory walks, Memory cafes, Memory clinics, and so on, as if it is ALL about memory loss. A friend and colleague of mine from Scotland Agnes Houston has written a booklet about the sensory changes many of us have caused by our dementia, and too often, as these are invisible to others, they are not believed anyway.

When I was in Scotland recently, I was interviewed on BBC Scotland television, along with a lovely chap, Professor Craig Ritchie, an academic and doctor in dementia. Afterwards, he said to me, he had a bit of a light bulb moment whilst listening to me. I had talked about how we are mostly all getting diagnosed much earlier in the disease process, but being treated as if we are end stage; he realised that this is indeed true, but what has happened (or rather not happened) is that we are still being ‘treated’ or ‘managed’ as if we are all late stage.

With the push for earlier diagnosis, in reality most of us are in a much earlier stage of our dementias, but the health care sector has not yet caught up with that fact!

It seems clear to me, that until we change the post diagnostic pathway to one that is re-abling, proactive and rehabilitative, and supportive of our disabilities, as well as get rid of Prescribed Disengagement®, then nothing will change for any of us; the public misperceptions will continue, the continuing insensitive comments like ‘but you don’t look like you have dementia will continue, and will the push towards dependence on the health system for our care will simply continue.

19 thoughts on ““But you don’t look like or sound like you have dementia”

  1. Pingback: Ramblings from the past, as I think about 2017… | Creating life with words: Inspiration, love and truth

  2. Yes, and a related issue is how to produce sensible advice/information about the challenges at different points in the evolution of the disease so as to be precise and useful in the education process.

    Also, I agree fully with what Karen said and would add that we all have hidden disAbilities that are not visible to others.

  3. I think that the “You don’t look like you have __________” (insert the words dementia, dyslexia, depression, kidney disease, thyroid disease, STD, anxiety, a headache, a tooth ache, migraines, whiplash, GERD, Learning Disability, arthritis, …. the list goes on) is common place. I don’t think this is a special phrase rudely tossed at just those of us with dementia. I think it just expresses surprise really, because there are no outward intense red flags flying for so many of these issues/diseases. Let’s face it… you see someone with a leg cast … they LOOK like they have a broken leg. See a bone sticking out from the skin after an accident? You LOOK like you have a broken bone. Have black eyes and a bandage on your nose? You LOOK like you have broken your nose. If you have blood dripping down from your body you look like you have some sort of injury. Wear glasses? You look like you have a vision problem. Wear visible hearing aids? You look like you have a hearing impairment. Know what I mean? I guess when someone makes this statement I’d rather not look at is as a rude obnoxious comment, but instead as a reality that hey…. I DON’T look like I have dementia. At least… not in that moment. But stick around a while… hang out with me. You might start to think differently. I also see it as a chance to educate. And I wouldn’t hold back from saying “I also don’t look like I have a thyroid issue, hearing impairment, or arthritis…. but I have all those as well.” I think they’d get the point. Could also add “I bet you also don’t look you have certain things too… some medical issue or mental issue that isn’t announcing itself upon first meeting someone… depression, addiction, anger issues, impulsivity, IBS… what ever…. but I bet you have something like that too… but you just don’t look like it.” It’s all good. Yes I fully agree that so many people jump to their view of what a person with dementia (or dyslexia or anger problems, etc.) looks like. And they absolutely are not always correct. But that really just shows that the public needs more education. And I am okay with helping to educate.

    • Great comments thanks Karen, it is great you have joined us here. The one thing I would disagree with regarding all the other diseases you listed – even though they also have the problem of acceptance due to being invisible – I have never once been called a liar or accused of making it up, or told my doctor is wrong by other doctors and scientists, with any of the other health issues I have, including those that are ‘not visible’. I have personally found dementia a more unique experience than any others I have had, and very often hear the same thing from others with dementia, so I am glad it has been more positive for you. Take care always 🙂

      • I agree with you Kate I have another unseen condition but nobody has ever questioned that condition. I have always been told by the medical profession how well I deal with it. However dementia is always being questioned.

  4. Pingback: Facial Recognition In Dementia

  5. I am so glad to have discovered your blog, Kate, via my new involvement as a volunteer with Bethanie, Red Cross and Alzheimer’s Association. I don’t have Dementia but my husband has advanced PDD and is often treated like an idiot. Thank you so much for your insights.

  6. I’m told frequently, whether in person or while on telephone conversations, “are you on medication now?” “You sound so clear-minded. Is the Alzheimer’s reversing now?”
    I often use the term, “the puppy in the window!” When people hear me give my presentations, there reactions are like, “oh look, there’s a gentleman with Alzheimer’s and he can talk so fluently and he can even read! Oh my God, I think he just made a joke!”
    I’m not making fun of anyone for thinking that way, if just tells me there is still much more awareness and education needed.
    Until then, my Advocacy continues. Now if you will excuse me, I have to get ready for a “puppy in the window appearance.” 🙂

    • Have fun being that ‘puppy in the window’ in your part of the world… onwards and upwards, through the ever increasing fog, we will all continue, and, we will eventually make a difference. xx

  7. Hi Kate this is so true, I agree with everything you say. I was told the same by a person when I was speaking about my journey with dementia. She said ” you don’t look and sound as if you have dementia”. My answer was I know and I don’t feel like it most of the time but I was diagnosed by two doctors at two different hospitals. Wnat am I supposed to look like? I was diagnosed very early as it was impacting on my job as a district nurse. Getting lost visiting patients I had visited for ten years, not being able to write a comprehensive sentence. Being unable to work out drug doses in my head Which I had done easily for 36 years. Also other things that on their own don’t count for much but are part of the bigger picture. They tell you keep healthy and eat a Mediterranean diet etc all the things I do. However because I am and can still tell them my name and address etc then people think you haven’t got dementia. They don’t see you walking up and down to the fridge because you are making a cup of tea but it takes you a long time as you keep forgetting the milk, or flooding the kitchen because you leave the water running. There’s a saying Don’t judge a book by its cover. So don’t judge me by what you see. It’s what you can’t see that is the problem. Hope I haven’t said too much. Take care Kate and keep fighting our corner.

  8. …Yes Kate, I have met many Dementia ‘Experts”……seems to be an on-going occurrance when one is eventually diagnosed with this horrible disease ……..it would be better if they engaged brain before mouth….
    …..me thinks…

  9. There is a pressing need for public education about the ways in which different types of dementia manifest in different individuals. The point about the emphasis on memory is important – similarly the emphasis on Alzheimer’s experienced by older citizens.This is understandable given that this is what the majority of people (whether living with dementia themselves or with a family member or as a general member of the public) will encounter. However it is not helpful for many. It was certainly problematic for the children and young people who took part in our AS uk funded project looking at the perceptions and experiences of children and young people who have a parent with YOD. It prevented the provision of the support services they – and their parents – would have found helpful and it led to maybe well meaning but ill informed comments from others who could have been supportive in day to day life.

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