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.”