Where are we going with dementia?
Last week we faced evidence that a diagnosis of dementia is followed by increased risk of suicide. We had learned earlier in the year that people who experienced bad dreams in middle life are more likely to develop dementia years later. This week we have it that researchers using the UK Biobank have discovered changes in cognition can be identified nine years before dementia becomes clinically obvious. Signs of dementia may be detectable nine years before diagnosis – study | Dementia | The Guardian
There is a danger that worthy and well-intentioned (expensive) research is creating the prospect of years of additional fear a dread that individuals may ‘fall victims’ to this ‘dreadful disease’.
I have put these words in inverted commas because they are part of the language of combat and pity that has become the narrative to raise awareness and funds.
But where are the funds going to?
At our Dementia Conversations we shared again stories of people who had found referral to services less helpful and reassuring than they had anticipated they would be:
‘a detailed work up, investigations, a diagnosis and a pile of leaflets – then back to our GP who seemed less than sure of what to do.’
‘I used to be very supportive of the Alzheimer’s Society, but now it feels like they want our money to do research but provide few services.’
‘You should have an Admiral Nurse’.
We do know how to provide services which provide continuity from referral to death and beyond. It does require investment of money and other resources to make it happen – but mostly the trick was to have a coordinated service, all parts respecting and supporting the others – and most certainly supporting patients (people with dementia) and their families right through.
There is suspicion that attention is too focussed at present on pre-clinical and early/possible problems – and genesis of fear and dread.