I think one of the things which most surprises me about life in general is how binary or polar things can become. One person’s valid scoop is another person’s political manipulation. Decisions we make are simplistically ‘Marmite’.
I don’t believe you can wake up one morning ‘with dementia’, when you didn’t ‘have it’ on the previous day. I do think it’s possible for fit the criteria one day with you not having met them previously. This brings up the issue of how we define the various dementias.
And the diagnosis does matter. For example, if you get re-diagnosed as ‘minimal cognitive impairment’ instead of dementia this can make quite a big impact on your life, especially if you have lived for years as a person with dementia.
I don’t think NHS England appears to care enough about validating or confirming diagnoses of dementia. I have been surprised by how many people living with dementia are not sure where the diagnosis came from, nor even who made the diagnosis.
But I do worry when there are powerful external factors at force. I think we get onto dangerous territory if you incentivise doctors financially into making a diagnosis. This NHS England policy was not only unethical, but morally repugnant. I agree on the need to ‘close the diagnosis gap’, but I do not agree on giving people who don’t have a diagnosis of dementia a diagnosis.
Overall things, though, are going well. There’s much more meaningful involvement, as opposed to meaningless involvement, of people living with dementia and carers now in research and service provision. I really do wish England and Wales well if they develop a working group in the future. The Scottish lead has been very useful here.
Scotland often, I feel, leads England through the work of Alzheimer Scotland. For example, there is a much more coherent construct of integrated care through their “eight pillars”. In comparison, efforts through the Better Care Fund in England have been piecemeal, unpredictable and sometimes unimpressive.
Scotland now, I feel, can strengthen their lead on human rights. Their influence on Alzheimer Europe is not insubstantial, but Alzheimer Europe can become emboldened on taking a lead on human rights as Netherlands assumes the Presidency from Luxembourg.
I wish to applaud Prof Peter Mittler for his brilliant work. From my viewpoint as an academic, it will be hugely useful if we can look at quality of life and wellbeing in the WHO sustainable cities. I have high hopes from the Dementia Alliance International, and I am genuinely enthused by the lead taken by Glenn Rees recently appointed as Chair of Alzheimer’s Disease International.
With human rights, you get them all. You can’t choose, as such, which rights apply to you. Thanks to the UN, they all do under the UN Universal Declaration of Human Rights.
But things might not be all or nothing ultimately for personal budgets. The power of the National Health Service comes from a comprehensive service, free at the point of use, but this is undermined if there is creeping rationing of services (possibly at the individual level through personal budgets).
Things might not be all or nothing if a universal NHS is somehow bolted onto a means-tested social care framework. We’ve got to stop airbrushing ‘social care’ into ‘and care’, and we’ve got to think about pumping money into social care, into promoting wellbeing.
I dare say the binary articulation of the debate is what ‘campaigns department’ of Big Charity advises – a simple message which is easy to brand or sell.
But this is a disservice to us all.
