Friday, 31 October 2014

A best-seller first novel that accurately portrays AD

I've just finished reading 'We Are Not Ourselves' by Matthew Thomas. It's one of the best books I've read for a long time.

One of the main characters develops Alzheimer's  -  a bit of a spoiler, I know, but that's the reason I'm recommending it here.

I found it absolutely authentic in its portrayal of the disease and its effects on the lives of others. I don't know of any other novels that have done this but I expect there are some.

I didn't know about the focus on Alzheimer's when I started the novel and wouldn't necessarily have chosen to read such a novel if I had known but I'm so glad I did.

Wednesday, 29 October 2014

Telling it like it is

This article in 'the Guardian' gives an accurate insight into the horrific ways in which dementia can affect the lives of people living with it, and the lives of their carers:

It serves as a good counter-balance to the sanitised view  -  a little old lady who has a bit of difficulty remembering things  -  that is so often presented via the media.

Thursday, 23 October 2014

Paying GPs £55 for diagnosing dementia

Readers in other countries may not be aware of a news story that is currently causing some controversy in the UK,  There is a proposal that GPs should be paid £55 for every case of dementia they diagnose (as I understand it, the money would go to the practice rather than to the GP personally).

Amongst the points that have been raised:

* Why should anyone be paid more for simply doing their job which diagnosis is part of?

* In reality when GPs suspect that a patient may have dementia they will normally refer them to a memory clinic/service for tests and scans and, hopefully, a confident diagnosis.

* There is anecdotal evidence that some GPs fail to spot the signs of dementia, particularly in younger people and, certainly, it would be unwise to assume that a GP can make an accurate diagnosis of the condition.  I've read of two cases recently where people have been wrongly diagnosed as having dementia.  In one case, a woman sold her house to pay for care and spent over a year in a care home before the error was discovered.

* A distinction needs to be made between a diagnosis of the condition we call dementia and a diagnosis of one or more of the diseases that cause the condition. If it's clear that the diagnosis of dementia is not always easy, diagnosis of the disease(s) can be very difficult. It is true to say that a definite diagnosis can only be made post mortem  -  if then.

* Is it wise to rush to diagnose people with a condition for which there is no cure and for which the only treatments are, for many people, inadequate or worse?
I've discussed this in earlier posts which you can find by using the search box (top left).

* Many people living with dementia, and their carers, feel that adequate support post-diagnosis should be the number one priority.  There's also a fear that a rapid increase in the number of diagnoses made will simply put more pressure on support services which are, in many cases, already falling apart or non-existent.

Thursday, 16 October 2014

Fast diagnosis - a bit of a reality check.

I've written before about various aspect of diagnosis (try search  -  left top corner  -  if you are interested).

This story is a little worrying:

The story is a useful reminder that the diagnosis of dementia, and more particularly the diagnosis of a specific disease, is not always as straightforward as the current demand for fast-track diagnosis would suggest. As the quoted dementia specialist says, it's a bit of a reality check.

Saturday, 4 October 2014

A study on the association between infectious burden and Alzheimer's disease.

The following link will take you to a summary of this study:

The conclusion of the study is that 'IB* consisting of CMV, HSV-1, B. burgdorferi, C. pneumoniae and H. pylori is associated with AD. This study supports the role of infection/inflammation in the etiopathogenesis of AD.'

*IB: 'Infectious Burden' (the burden of previous infections by the viruses and bacteria mentioned)

This particularly interests me because my wife's dementia followed a long period, maybe 15 years, when she more or less constantly suffered from debilitating infections (I know that she tested positive for, amongst many viruses, CMV and HIV-1 and B. burgdorferi  -  which she has never been tested for  -  causes Lyme Disease which may be relevant in S's case see this).  I suspect others will be interested for similar reasons. 

I've previously seen it suggested that repeated infections might lay the groundwork, so to speak, for Alzheimer's but, for us, this conclusion takes things to a new level and might put a number of jigsaw pieces together  -  for what that's worth at this stage.