Ethics, Human Rights and dementia

Screen Shot 2015-05-07 at 5.06.24 pmFor many years, I have written about the things that stand out to me as wrong about the way dementia is seen, talked about, or managed for those of us living with it, not only dying from it. One issue that is very prevalent is that many doctors still do not bother to tell some of their patients they have dementia, and I have had public debates on this topic, with geriatricians and neurologists demanding loudly that it is their tight not to tell some patients they have dementia, which as they and I know, is a terminal, progressive illness… Imagine if they didn’t tell someone they have an untreatable cancer?????

The other, which was written about in the Huffington Post recently, is that dementia is often not included on death certificates. This has to be ethically wrong, and maybe the time is now that doctors should to be held to account over both issues. And whilst ever dementia is not listed as a cause of death on death certificates, the reality of so many of us dying from dementia or dementia related complications is being ignored and grossly under reported.

In the article referred to above, Death Due to… Alzheimer’s?, by Allan S Vann, he says;

In 2014, relying upon two studies conducted with partial funding from the National Institute on Aging (NIA), one of the National Institutes of Health (NIH), the NIA concluded that, “Underreporting of Alzheimer’s as a cause of death on death certificates is a well-known phenomenon. Some people with the disease never receive a diagnosis. Many others have dementia-related conditions, such as aspiration pneumonia, listed as the primary cause of death while the underlying cause, Alzheimer’s, is never reported.

In another article highlighted to me by a friend and colleague Dr Shibley Rahman, Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study, part of the conclusion to the study says; “… mortality data still considerably underestimate the population burden of dementia.

This is also an ethical issue, and a human rights issue, not just a data or reporting issue. Families deserve the recognition of the impact of all diseases, especially dementia, as the impact on them before and after death is significant. Not to state dementia was part of the reason, sometimes the only reason for death, is wrong, and not to may also negatively affect the way people cope after the death of someone they have supported and loved.

Human Rights for people with dementia was a highlight for Dementia Awareness Week UK this last week, and it will continue to be an issue I raise here and elsewhere as often as possible. You can read the DAI position paper on it here, and the DAI HR publication can be downloaded here: Human Rights for People Living with Dementia – Rhetoric to Reality

10 thoughts on “Ethics, Human Rights and dementia

  1. Kate,
    I relate strongly to your first paragraph.
    Do we as a society have a culture of secrecy to avoid front on psychological harm?
    Or is it that the majority of the medical profession just does not have the guts to say it like it is?
    We endured (in retrospect) nine years of obfuscation till a South African Doctor said it like it is.
    Knowing would have made that nine years far more liveable plus maybe a couple more years outside of care.
    Keep up your battle and maybe the medical profession will take it on board.


  2. Thanks for this important post, Kate. I had a question burning in my mind when reading this: Is there an explanation as to “why” this is happening? I don’t understand what the rationale is behind not listing the actual cause of death. And what you are saying is important because how can one generate more funding and concrete support for a condition that is going vastly under-reported?


    • I have no idea why, including why doctors think it is ok not to tell someone they have dementia! Unthinkable for ANY other disease, and completely skews the reality of just how many have dementia as well. And, as you rightly say, it affects funding, which I had not thought about!


      • Yes, I agree with you about how bizarre/unethical it is to deny people the information about their own condition. Seems like an enactment of the “Does she/he take sugar” phenomenon. And your analogy– imagine not telling someone they have cancer–illustrates the gulf between touted consumer-centered-care and how our societies actually treat people who have dementia.


  3. Hi Kate when my dad died he was diagnosed with Alzheimer’s at 61 years of age however when he died at 68 it was not put on his death certificate and yes he didn’t actually die of the alzheimers but they could have added it on to the death certificate.


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