[Study reported in Brain (Brain. 2020 Oct; 143(10): 2895–2903. PMCID: PMC7586080 Published online 2020 Aug 13. doi: 10.1093/brain/awaa224 PMID: 32791521 Functional cognitive disorder: dementia’s blind spot)]
Some will have read recently in social media comments made by Professor Rob Howard about whether some of us have been misdiagnosed with dementia. We find these comments hurtful.
I read a study (of which he was one of the authors) published in 2020 in the journal Brain, the title of which is Functional Cognitive Disorder: dementia’s blind spot.
Prof Rob Howard seems to be saying in his various comments on social media that those of us who can and do speak publicly, and write, about living with dementia do not have dementia. His hypothesis is that we have been misdiagnosed.
For example, I cannot have dementia and be able to read his paper and write this blog, because the neurodegeneration implicit in dementia would prevent me from doing so.
The authors of this study state that MCI (mild cognitive impairment) does not convert inevitably to dementia. And MCI can include many causes other than neurodegeneration.
The underlying hypothesis is that a significant proportion of people diagnosed with dementia (most often Alzheimers’s Disease) do not have neurodegeneration. The authors use the terms Functional Cognitive Disorder and Subjective Cognitive disorder to describe the conditions that are misdiagnosed.
One of the key elements that categorise FCD seems to be inconsistency. Thus, a patient would give different responses to questions or tasks on different days or in different environments.
I deduce from this that the authors’ view is that Alzheimers Disease is a neurodegenerative disorder whereby damaged areas of the brain produce consistent functional inability. And that therefore inconsistency is evidence against neurodegeneration.
Many people living with a diagnosis of dementia experience good and bad days. We don’t usually know why. Causes can probably include physical activity leading to fatigue, or stress caused by excess sensual stimulation (noise, cold, movement…). We often describe these situations in our conversations.
Many of us believe that when one part of the brain, perhaps very small, ceases to function due to trauma or degeneration the brain finds a new route around the blockage. This is the essence of learning: creating neural pathways.
This happens fastest in young brains, with the greatest neuroplasticity. Older brains, it seems, cannot create new pathways as easily. But we all know (from television and other media) that people with traumatic brain injury can learn to find ways of doing things that the injury has prevented.
The newly learned function may not be as efficient as what has been damaged, but it can still work.
I have been told that my high functioning brain has compensated to a large extent for the deficits caused by my underlying brain disease. (Yes, I have an IQ of around 130-135.) Hence, my brain is able to learn and adapt better than some others. Many of the people I know whose decline is slow are also high functioning individuals.
So our brains have found ways around our blockages, whatever caused these.
On inconsistency, aren’t humans inconsistent? We are not automatons. If we get tired we don’t function as well, and stressed/tired people often do become inconsistent in their behaviour, and their responses to situations.
Then, why would we not find that activity and fatigue have a far greater negative impact on brain function along new, less efficient pathways that we have developed to get round blockages?
We often describe how as long as we think hard about what we do we can usually manage to do it. Only when we switch to autopilot, like we used to, do we make mistakes. (Boil a dry kettle, say the wrong word, fall over…). It’s hard work, living with brain disease. Some people do not fight it; others do.
The authors write about FCD being non degenerative. They imply that a cause might be stress and anxiety, which over a lifetime can cause the symptoms diagnosed as dementia. And that certain therapies can be helpful to alleviate these symptoms.
I certainly do not disagree with this. And I put myself in that camp. Indeed, I was first diagnosed with MCI following a PET scan and biomarker tests several years before my dementia diagnosis.
However, my symptoms became worse over years. I was not offered therapies. I was prescribed mirtazipine, which I did not tolerate because it totally knocked me out. I was prescribed anti-depressants, which seemed to help. Though I am uncertain about this effect.
Things got worse and I was scanned again, which showed neurodegeneration. I did several hours of testing. And the Memory Service psychologist and consultant psychiatrist told me I had Alzheimers and Vascular dementia.
In these circumstances why would I not believe that they were right? It added up to me. And to them!
So, to conclude, Prof Howard and others may or may not be right about misdiagnoses, but there appears to be no solid and accepted clinical evidence that is used in cognitive assessment services around the country to distinguish these different diagnoses.
To announce on social media that those of us who advocate for better (or any) support services cannot possibly have dementia is wrong. Morally wrong. Medically wrong.
Prof Howard has not examined and tested us. He is an medical academic studying the intricacies of how the brain works without being able to open up our living brains to examine them. He wants solid, demonstrable facts, and believes that a definitive taxonomy for diagnosis is possible. So he denies what is as yet a mixture of subjective and objective judgement by professionals.
If head scans show degeneration, and tests confirm this, who is he to tell us we are presenting a false narrative of living with dementia.
If consultant experts tell us we have dementia why would we not believe them?
Who is anyone to say that if we don’t need 24 hour care we cannot have dementia?
What we are doing is telling people across the world that brain disease usually develops slowly and that while it is possible you should live as well as you can or choose, and do the things that make life worthwhile and enjoyable. Learn new skills. Meet new friends.
A diagnosis is not the end of the world; it is often the start of a new one.
If you read our blogs and books you assume that we cannot have this disease. What you do not see is the effort and time and delays and stumbling that our lives have become. We’re just not dead yet.