Doubting a diagnosis of dementia

/ December 1, 2018

In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone, it was disturbing. I’m reasonably certain, in the same way people rally around someone diagnosed with cancer, they also never doubt the diagnosis, including when the person ‘does better than expected‘.

People with cancer (or any other ‘mostly invisible’ diseases) are never diagnosed or doubted publicly, including by others after a conversation, presentation or after reading a book or blog. I can never tell who in a room has heart disease, diabetes, and in the early stages of conditions such as multiple sclerosis, and even Parkinson’s. It is the same for people with dementia as they don’t look or act like it, until they deteriorate. Even then, it is not always easy to ‘see’ if the person has some other late/end stage co morbidities, or dementia.

Professor Robert Howard, a psychiatrist from the UK wrote an article published in the Lancet Psychiatry in 2017 with his valid concerns about the diagnoses of people with dementia who appear publicly, or write books and blogs. It is called Doubts about dementia diagnoses; you can download it in full here. Rob told me it was “meant to be a starting point for a thoughtful and mutually respectful conversation.” It has definitely increased the attention on this matter, one which people with dementia have been discussing for years. However, it has also caused significant distress to many people with dementia (and their families) who have become advocates, authors or speakers, and who have been formally diagnosed with dementia.

Professor William Hu referred to Howard’s article as brave, but pointed our he himself has no doubts about anyone’s diagnosis, and responded with an article also published in The Lancet Psychiatry titled; No doubts about dementia advocacy. The following by Hu is noteworthy:

“Finally, substantial stigma exists that is associated with the reliability and trustworthiness of Persons with Dementia. The reluctance to believe these individuals contributes to crimes in nursing homes in the USA, and is reinforced by the clinical practice of assessing them only for their deficits and not for their residual functions. 

If we re-imagine dementia through the rehabilitation principles of impairment and disability, dementia advocates’ exceptional courage to speak up is a form of resilience and not a contradiction to their disease. Dementia advocates thus remind me of Paralympic athletes, whose visible disabilities are never in doubt despite great personal accomplishments.“

People with dementia have been writing and talking about this for many years; since Howard’s article and continuing Tweets doubting people’s diagnoses, the debate has increased, but it is also noteworthy to state this is causing harm, and is deeply distressing to a great many people who have been formally diagnosed with dementia. Hence, I’ve added two recent responses to the dementia doubter(s).

Wendy Mitchell’s recent blog reads as if she feels bullied; the public doubting of dementia advocates has even resulted in her blocking some professionals on social media. It is titled  Professional Questioning……

As the Chair of Dementia Alliance International, I also wrote an article published November 26, 2018, The reliability and meaning of a dementia diagnosis; I felt obliged to respond to the issue, and to support our members, and indeed, anyone with dementia facing this issue. I tried to have it published in the Lancet Psychiatry Journal, and was only offered a 500 word commentary, which I rejected because I believed this topic required a more thorough response. My article in the Australian Journal of Dementia Care was prefaced with:

“In this response to the ‘dementia doubters’ who claim public dementia advocates may, in fact, not have dementia, Kate Swaffer discusses the legitimacy of a diagnosis and the myth that dementia is a pathway that leads only to deficits and death.”

Further on in my article, I state: “The stories of many other advocates who speak publicly indicate the dementia-doubters are global. Even those who don’t speak publicly as advocates are often told by family or friends that they ‘don’t look like they have dementia’”. One of the DAI Webinars “But you don’t look like you have dementia” highlights this clearly, and that it has been happening for almost two decades.

This is most certainly a topic that continues to cause a lot of debate, but it is also causing considerable distress to those who have had formal diagnoses, and have had our heads stuck inside noisy machines for MRI, SPECT and PET scans, and therefore have also had radioactive dye injected into our veins, as well as sitting through hours of neuropsych testing; many of us have follow testing at very regular intervals to monitor our progression. It also is very disturbing and upsetting to our families, all who have sat beside us in the doctors rooms with us when we are given our diagnoses. Finally, it is completely unreasonable for anyone to make claims publicly such as “who clearly don’t have dementia.” 

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37 thoughts on “Doubting a diagnosis of dementia”

  1. Pingback: In The Blogs – December 2018 – When The Fog Lifts

  2. I have had my diagnosis now for 5 yrs and all of a sudden there is this push-back, doubt from the medical community about my diagnosis because I’m doing well, not following the expected trajectory, I’m an outlier for sure. How come the same Petscan which condemned me to my diagnosis appears no longer good enough?

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    • Dear Roxanne… so sorry to read this. As you say, why is the same PET scan no longer valid?! There are certainly too many people with dementia who have ‘not followed the expected trajectory’… but also, we are more often refusing to only go home and prepare to die. 20th century management and expectations for 21st century diagnoses. Take care, and keep being an outlier! X

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  6. Don’t know if this will help, but my brain shows no signs of dementia but I have symptoms of PCA, finally they did a lumbar puncture and we got the result today; some chemical is abnormal so there is the proof for the Drs. It was a specialised test, but we now have a definitive answer!

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  7. “Luckily”, I live in Scotland which has pretty good dementia services, but because the disease (which it is) is invisible and not expected to hit us under 65’s I am sometimes doubted. I am afraid I gave in and got a stick to walk with so people can see I am not drunk. My condition is getting worse (PCA) so my vision is more blurred and I am about to be trained with a white stick. PCA affects the eyes, through the brain so my memory is still very good which amazes people when I go to quizzes, especially as I have usually zoned out before coming up with a hard answer!

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    • Thanks for joining the conversation here Martin… wishing you the best as well. And thanks for following me here.

      Also, Dementia Alliance International runs a weekly online support group on Mondays, if you wanted to join us. We have some friends from Scotland who co host it too! Check us out here http://www.infodai.org

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  8. Pingback: In The Blogs – November 2018 – When The Fog Lifts

  10. Reblogged this on Better Spaces Better Lives and commented:
    A brilliant article by Kate Swaffer and a must read. I have been saying this over and over again, having worked in imaging for a short while. MRI and procedures for scans are stressful and distressing. And the whole process of diagnosis is just a mind field.

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  12. To me, this reinforces the need to distinguish the different type of dementia someone is living with. When we say, “you don’t act like you have dementia”, that means there is a stereotype. Stereotyping breeds expectations, and that leads to stigma!!
    If we follow up the observation of “you don’t act like you have dementia. Maybe, it is a different type…” Then we are open to accepting not all dementia involves memory loss and the trajectory is not the same for all people.
    There is a “wonder” to dementia. Just like looking up to the stars. There isn’t one answer or theory to all of the universe, and the brain is more complex than that!
    I realize when people are in fear of not having the answers they shut down those who are host to more questions.
    Maybe next time someone doesn’t seem like they have dementia, two things should happen. 1) We are thankful, and 2) We become more curious and ask “why?”.

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  13. Yet again my experience with Gregory’s diagnosis and living with Dementia for twelve years must have been golden. We were never challenged or told “you don’t look like you have “it.” The idea that this idea and practice by the medical field, friends, and family exists, amazes me. As you have said, who would want to pretend!!! I got the comment a lot when I was dealing with cancer and used to say I was happy I lost all my hair due to chemo because at least it was a marker that in fact, I did have the disease. Before I lost my hair with the chemo and cortisone included, I actually looked healthier than usual. But please, it was hard enough to deal with this invisible disease attacking me from the inside without having to defend myself to others. “You look really great!” Thanks but no thanks. What is there to gain by these nay-sayers?

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  14. Bob and I have incountered the same for years. As a caregiver it is demoralizing to think that we would be lieing about this disease. I have been told all too many times “he has not changed and appears the same as always”

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  15. You’ve been going through this for far more years than me Kate. It often makes me feel like a curio in the circus….the 2 headed woman people flock to see….it’s exhausting and brings me down, as if we havn’t got enough to cope with. But sadly there will always be those curious people when we dont conform to the norm….xxxx

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  16. It’s a constant battle. Throughout my life, I have always done the best I can in the circumstances, why should it be any different now, with a dementia diagnosis….but now no longer seen as resilient by many who seem to think I would be silly enough to “pretend” that I have dementia.

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  17. When we take proper care of ourselves as best we can (eliminate stress, proper diet and exercise), we can appear normal to others and even to ourselves but, our reality always reappears. During those “feel good times” I actually catch myself worrying if someone is going to doubt or question my illness. It happens a lot actually. Even that little worry lurking in the confounds of my mind causes stress I don’t need and should not have to process.
    Would I have to be concerned about “appearing normal” with any other disease? No.

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  18. Even I want to doubt my dx. But I am allowed moments of denial, or qustioning or hope…..But to be considered a fraud after we so want to not have an incurrable disease is wrong in so many ways.

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    • Agree Diana. Every time I’m retested formally, I too hope it’s not dementia. I’d much prefer a treatable mental illness or some other treatable condition. But that is not to say I’m in denial, or sitting around waiting to die either. I’m working hard to hopefully delay the progression, seemingly with success too as my own neurologist is now interested in my approach, as are many more forward thinking clinicians and researchers now.

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