The term ‘post diagnostic support’, as applied to dementia, I feel is incredibly unconvincing. English dementia policy has entrenched itself in a position of the primacy of the diagnosis. I do not wish to rehearse yet again the numerous arguments for and against the timely diagnosis here.
In an ideal world, ideal for Big Pharma that is, you’d invest in an insurance package in the US., or you’d be a patient of the NHS, and, on your diagnosis of possible dementia, your general practitioner would prescribe you a “magic bullet”. The bullet might slow the progression of your dementia right down, or may even stop you getting definitive symptoms.
And there is quite a quaint faith in ‘cures’. You can’t as such ‘cure’ headaches or asthma. And the drugs which were trialled on healthy 30-40 year-olds as single interventions aren’t necessarily going to behave themselves in 60-70 year-olds with a number of other medical complaints receiving polypharmacy.
But the world is not ideal – the cuts in social care around the world are testament to that. If the numerous failures in orphan pharmacotherapy for Alzheimer’s disease is anything to go by, it might be wise not to repeat the same mistake yet further and expect a different result.
The diagnosis disclosure itself is not the simple imparting of information that ‘you have dementia’. It should be a chance for the person giving the diagnosis, whether a physician, GP, specialist nurse or otherwise, to explore the beliefs, concerns and expectations of the recipient of that diagnosis. And if necessary, it should be a chance for the person to have some counselling about the potential implications of the diagnosis.
The phenomenon of ‘nothing can be done’ has a number of repercussions for people. It can lead to a delay in seeking a diagnosis, and lead to a lack of engagement with the diagnosis once given.
It is also untrue.
A correct diagnosis of dementia could lead, perhaps, to the correct care and support mechanisms coming into action.
I have personally problems with the notion of ‘consumer choice’, but not because I am a protecter of the professions’ vested interests. Far from it.
I once asked Prof Bob Woods what he thought of ‘meaningful activities’. Prof Woods replied ‘better than meaningless activities, I suppose, Shibley?’
Likewise, it has to be, surely, the case that choice is meaningful too? Actual choice is scuppered by all of the social determinants of health – and in particular lack of money.
But I do not agree with an overly paternalistic, profession-driven, approach either. I think a person after a diagnosis of dementia should be actively making decisions about what’s best for him or her after diagnosis.
This might include appropriate housing as a personal home, or residential settings. Or it might include help with speech or swallowing from a speech or language therapist. Or it might include preventative strategies for medics for high blood pressure or high cholesterol. Or it might include occupational therapy intervention for assistive technology help, such as memory aids, not all of which is prohibitively expensive.
I think also the ‘enablement’ perspective also recognises that you may not be able to get a person to exactly where he or she was before, but allows for diversity, and allows for the existence of a person equally as valid, at least, as that pre-diagnosis.
Planning for the future also necessarily involves protection; and this could include protection over financial and legal affairs, such as power of attorney or budgets. The social care profession must have a seat at the table there.
I really do feel the term ‘post diagnostic support’ does a disservice to what should and could be happening beyond a diagnosis of dementia. This is evident in the output from some of current clinical leaders in dementia all too sadly.