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'What the hell happened to my brain? Living beyond dementia' by Kate Swaffer

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communication, dementia awareness

Kate Swaffer is phenomenal. Diagnosed with frontotemporal dementia before the age of 50, she has been a leading advocate for dementia ever since, with a much-followed blog site (https://kateswaffer.com/), addresses at numerous conferences and the best-selling book whose title heads this blog post. She is a member of the World Dementia Council and co-founder and chair of Dementia Alliance International, the first global organisation exclusively for people with dementia. It is entirely fitting that she is the South Australian nominee for Australian of the Year 2017 and of course we hope she wins. Last year’s victor was Chief of the Army and in 2015 the winner was a campaigner against domestic violence.

The book makes interesting reading, with some biographical material, some very illuminating descriptions of the difficulties Kate has with memory, words and so on, and then a lot of material aimed to support people with dementia in their lives but also a call to action for people with dementia to be more involved. She acknowledges that there is some repetition in her style, and this is indeed the case. However, points made more than once are perhaps the important ones. I don’t want to post a conventional book review but would like simply to discuss the two points that most struck me.

One experience Kate has often had is being challenged over her diagnosis. It seems that if you appear to be functioning well or speaking at an international conference, there is an assumption that you can’t have dementia and thereby there is an implication of fraud. Kate describes how offensive this is. You would not be challenged if you said that you have cancer or diabetes, or just about any other condition, so why is dementia different? Surely, the earlier that cases are diagnosed, the more likely that people will be less impaired and therefore well able to express themselves, especially if there is support for their writing. It is unlikely that most people would choose to have a diagnosis of dementia, especially if they don’t have the condition*, so as it is not appropriate to interrogate people about their medical histories, then we must accept what they say and we should regard such questioning as rude and inappropriate when we hear it.

Kate has an ear for a strong catch phrase and one of these is Prescribed Disengagement, which she has trademarked, hence the capitals. This is what happens in most cases after a diagnosis of dementia. The person is advised to stop work, stop driving, stop most things, and concentrate on living out what remains of their life. Kate quite rightly points out that this is the opposite of every other medical condition, where the patient is encouraged to fight the disease, keep going, press for reasonable adjustments to enable them to keep working, and so on. She also makes a strong argument that if she had the same impairments that she has, but due to another condition such as brain injury or stroke, she would expect to be offered a whole list of rehabilitative opportunities, e.g. speech and language therapy, dietary advice, counselling (including grief work), social work and so on. This of course is completely unjustifiable and I’d totally agree. I have suggested myself that we consider ‘the Deal for Dementia’ and this is to some extent reflected in the current interest in post-diagnostic support. Though I fear that what is considered is still pathetic in relation to what people with dementia really need.

*You may remember the Guinness case of 1991, where a defendant was released from prison because he was said to have Alzheimer’s disease. However, this seemed to resolve quite nicely after his release.

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