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The five key messages of ‘Dementia Friends’

Ideally, at the end of a ‘Dementia Friends’ session, each participant will have learned the five key things that everyone should know about dementia, and aspired to turn an understanding into a commitment to action.

In this blogpost, I wish just to discuss a little bit these messages in a way that is interesting. If you’re interested in finding out more about ‘Dementia Friends’, please go to their website. Whatever, I hope you become interested about the dementias, even if you are not already.

I’ve got nothing to do with writing ‘Dementia Friends’.

1. Dementia is not a natural part of aging.

This is an extremely important message.

However, it is known that the greatest known risk factor for dementias overall is increasing age. The majority of people with Alzheimer’s disease, typically manifest as problems in new learning and short term memory are indeed 65 and older.

But Alzheimer’s disease is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

2. It is caused by diseases of the brain.

Prof John Hodges, who did the Foreword to my book, has written the current chapter on dementia in the Oxford Textbook of Medicine. He also supervised my Ph.D. The chapter is here.

There is a huge number of causes of dementia.

List

The ‘qualifier’ on this statement is that the diseases affect the brain somehow to produce the problems in thinking. But dementia can occur in the context of conditions which affect the rest of the body too, such as syphilis or systematic lupus erythematosus (“SLE”).

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

3. It’s not just about memory loss.

This statement is perhaps ambiguous.

“Not just” might be taken to imply that memory loss should be a part of the presenting symptoms of the dementia.

On the other hand, it might be taken to mean “the presentation can have nothing to do with memory loss”, which is an accurate statement given the current state of play.

John (Hodges) comments:

“The definition of dementia has evolved from one of progressive global intellectual deterioration to a syndrome consisting of progressive impairment in memory and at least one other cognitive deficit (aphasia, apraxia, agnosia, or disturbance in executive function) in the absence of another explanatory central nervous system disorder, depression, or delirium (according to the Diagnostic and Statistical Manual of Mental Disorders , 4th edition (DSM-IV)). Even this recent syndrome concept is becoming inadequate, as researchers and clinicians become more aware of the specific early cognitive profile associated with different dementia syndromes.”

I remember, as part of my own Ph.D. at the University of Cambridge on the behavioural variant of frontotemporal dementia,virtually all the persons with that specific dementia syndrome, in my study later published in the prestigious journal Brain, had plum-normal memory. In the most up to date global criteria for this syndrome, which should be in the hands of experts, memory is not even part of the six discriminating features of this syndrome as reported.

Exactly the same arguments hold for dementia syndromes which might be picked up through a subtle but robust problem with visual perception (e.g. posterior cortical atrophy) or in language (e.g. semantic dementia or progressive (non-) fluent aphasia, logopenic aphasia.) <- note that this is in the absence of a profound amnestic syndrome (substantial memory problems) as us cognitive neuropsychologists would put it.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

4. It’s possible to live well with dementia.

I of course passionately believe this, or I wouldn’t have written a book on it. It is, apart from all else potentially, the name of the current English dementia strategy.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

 5. There is more to the person than the dementia.

This is an extremely important message. I sometimes feel that medics get totally lost in their own clinical diagnoses, backed up by a history, examination and relevant investigations; and they become focused on treating the diagnosis rather than the person with medications. But once you’ve met one person living with dementia, you’ve done exactly that. You’ve met only one person living with dementia. And it is impossible  to generalise for what a person with Alzheimer’s disease at a certain age performs like. We need to get round to a more ‘whole person’ concept of the person, in not just recognising physical and mental health but social care and support needs, but realising that a person’s past will influence his present and future; and how he or she interacts with the environment will massively influence that.

 

[For a further discussion of this statement, please see another blogpost of mine.]

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