Is ‘diagnosed with dementia’ the new ‘in’ group?

Image course: googleimages.com and oslcmonte.com

Image source: googleimages.com and oslcmonte.com

The road to a confirmed diagnosis of one or other type of dementia is usually a difficult one, and one that research says can take at least three years for people under the age of 65. In very basic terms, being confirmed with dementia means at least two of the symptoms of dementia get in the way of daily living.

As patients, it seems, the inaccuracies, the misdiagnoses, the lack of a confirmed diagnosis, and the overall management and care comes down to faith! When I looked for an image for the word confirmed, it came up with a religious one! So, perhaps it really is, from our perspective, all about faith.

Dr Shibley Rahman wrote a blog about Mild Cognitive Impairment (MCI) recently, in part as a response to Ken Clasper’s blog Rediagnosis from one dementia to MCI about his diagnosis being changed.  I imagine, if I had been tested repeatedly over as many as ten or more years, and had not been given a diagnosis of dementia, I would have to believe the symptoms of dementia may be caused from something else. All sorts of health issues that are not dementia can cause cognitive impairment, for example depression, urinary tract infections, other types of mental illness such as conversion disorder.

There are literally a barrage of reasons that cognitive impairment can occur, and that are not be attributed to a dementia. It is extremely complex, and to blame doctors is not necessarily helpful or right. They are doing their best, in a world where change is happening so quickly, and it is very hard to keep up. On top of that, the undergraduate training of older doctors, did not educate about dementia enough; it is pleasing there are so many countries who are up-skilling undergraduates doctors and nurses, as well as those already in practice, including in Australia.

But on top of a diagnosis of dementia, it is very unsettling to have been incorrectly diagnosed with something like depression, only to find out years later, it was in fact, a dementia.

It is, also, according to the people I know who have had a diagnosis of dementia changed to something that is not a dementia, even more unsettling and confusing. I’m told, it makes them feel like frauds.

Currently, a diagnosis of any dementia cannot be confirmed until an autopsy. The point being, not enough is known yet about dementia, and further research is required before we can be positive of any dementia diagnosis. However, doctors can be reasonably sure, certainly enough to either confirm, or not confirm a diagnosis even though occasionally they make mistakes. Well, let’s be reasonable, everyone makes mistakes.

Curiously, there are some people who obviously to want to have a diagnosis of dementia, and who may in fact be living with many of the symptoms of dementia, but even after extensive testing, have not had a diagnosis of a dementia confirmed.

It makes me wonder, is dementia the current ‘in’ group to be in, simply because many people are speaking out as advocates, and it is gaining publicity?

Earlier this year, I even heard someone who does not have dementia or even MCI, nor is worried they might have, say that they almost wished they had dementia so they could be a member of Dementia Alliance International.

Now, that is a huge compliment for that organisation, especially one so young, but really, who would want to be diagnosed with a terminal illness, for which there is no cure in sight, and not even any disease modifying drugs available yet???? Wow, dementia must be being seen as some rather fabulous ‘club’ to be in.

There has been an interesting Facebook discussion following Ken and Shibley’s blogs about whether MCI leads to dementia, and this image shows part of that conversation. It is indeed complex, and rather fascinating.

Facebook conversation between Shibley Rahman and Kate Swaffer

Facebook conversation between Shibley Rahman and Kate Swaffer

8 thoughts on “Is ‘diagnosed with dementia’ the new ‘in’ group?

  1. Very interesting, thank you, Kate!
    I have had some interesting and unexpected experiences through an online forum for people with memory problems, their families, professionals working in that area, and others interested in memory issues. But there are some things that have made me uneasy over the past year or so….
    I have seen a few times when someone has posted a question about another memory issue or cause for their memory problems and have been told that they are being controversial or causing arguments, or they get no response at all. There have also been numerous posts about how the so-called “experts” (they use this phrase and quotation marks) are not doing much as far as finding a cause or cure and that the only experts in dementia are those who have it themselves. People discuss, and there are comments on believing the guy with dementia over some scientist or care partner – some of them actively excluding and discrediting others because they don’t have a diagnosis. I don’t know if people are being polite, supportive of the man with dementia who makes these posts, or if they honestly feel the field of dementia should be left to people who actually have dementia…..
    There seems to be some growing, unstated feeling that the people with dementia are primarily the ones with valid opinions to offer in this forum (of course, that is not their intention, but it has become a noticeable thread, in my opinion). They are the in-crowd.

    • Yes, indeed, it is an interesting situation. Regarding people with dementia being the ‘experts’ – I only believe we are the experts of the LIVED experience, and of course, the professionals working or researching in the field are also EXPERTS. It would be like saying only a pregnant mother was an expert of obstetrics! The challenge, to date, has been we have not been respected for our lived expertise, and so people with dementia have been a bit grumpy about this.

      But, we cannot and should not self diagnose, only medical doctors can do that, and I do to believe anyone with cognitive impairment should be saying they are living with the symptoms of dementia, as there are so many other things they can spring from. Yes, they can take a long time, they can get it wrong, but they are the EXPERTS in diagnosing, not us.

  2. Once again thanks heaps Kate, your blog is sooo helpful…interesting reading today…My wife was diagnosed with MCI 2013 then a year later younger alzheimer s and I’ve heard its quite high the number who go from MCI to alzheimers?…Plus the thought that sometimes the diagnosis can change. That has never occurred to me until now…Re the new ‘in’ group who in their right mind, (scuse the pun,) would want to be in the group. As you know its a tough ride for everyone involved…Once again thanks Kate

    • It is indeed a very tough ride, and I for one, would rather not be in the ‘club’, but it seems, some who have not been able to get a confirmed diagnosis, actually want to be… and are labelling themselves as people living with the symptoms of dementia… even weirder to me, especially as their symptoms may not be anything to do with a dementia!

  3. After having had a number of problems, on which we couldn’t quite put an “understanding” finger, we were actually relieved when we received the diagnosis of “dementia most possibly Alzheimer’s.”

    At least we knew what we were dealing with. The doctors had run many tests and ruled out other treatable issues that would cause dementia like symptoms: low oxygen, vitamin B deficiency, small TIAs, etc.

    While the actually roller coaster of the last 11+ years slowly took us by surprise we adjusted, acclimated, compensated, studied, and lived our life on a day by day more fully than ever basis! We put our financial house in order as well las power of attorney over health and property. Not only for Gregory but for me as well in the event I would pre-decease him.

    Having the diagnosis “Alzheimer’s” helped with insurance, private disability insurance, social security disability, and “How do you explain this to family and friends.” In many ways the past 11+ years have not only been a roller coaster but have also given us many gifts as we enjoy our life to the fullest and our loves continues to grow stronger!

    Most recently I had a long discussion with our Neurologist, asking him “Who is Gregory today?” It was very helpful as well as disturbing. This is a link to my analysis of where we are today: http://mhorvichcares.blogspot.com/2015/06/between-rock-and-hardplace.html

    Thank you Kate for your words of wisdom and for sharing with us life on the other side of the Dementia Door. It gives us caregivers great understanding and the ability to be more giving, caring, and compassionate.

    • It is for most of us a very long and difficult process to get a diagnosis at all, as you have also expressed.
      I guess though, if your Gregory or I had been having tests based on various cognitive impairments, to see if we had dementia, and after 10+ or even 5+ years were continually told they were not stemming from a dementia, I can’t imagine why I would want to say I was living with the symptoms o dementia, when in fact, they could and probably after so many years of testing, one could very reasonably expect them to be caused by something else entirely… a lack of a confirmation of a diagnosis, after repeated testings, would indicate to me, it is probably not dementia… what are your thoughts on this? As a woman said on twitter this morning after reading my blog, people are very welcome to have her mums dementia!!!

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