One of the critical messages in recent public health awareness campaigns about dementia is that there is much more to a person living with dementia than his or her actual diagnosis. This focus on personhood, how the person living with dementia understands himself or herself, in the context of his past, present and relationships, and in relation to his or her own environment, is of course critical. It is likely to be embraced in the overall approach of whole person care in this jurisdiction.

Much of the current policy in England in dementia is driven by a scant existence of relevant evidence, for example the mental distress and lack of appropriate management caused by false diagnoses of dementia not confirmed elsewhere in the system. For example, even in the eight years since the seminal paper by Gail Mountain in the journal ‘Dementia’ in 2006, we have had little progress in the literature on the extent to which people at various stages of different types of dementia are able to manage, or want to manage, their own conditions, depending on their cognitive, affective or motivational abilities. This blogpost is about the form of personal budgets where people with dementia are given the money directly to spend, without any broker.

Likewise, the approach of personal budgets in dementia has equal scant regard to an approach necessitated by the cognitive neuroscience. Being able to operate a budget is likely to require a good understanding of mathematics; and it has been known for decades, or if not centuries, that people with disruption of the functioning of a part of the brain known as the parietal cortex can have problems with calculations. This is called ‘dyscalculia’.

Some people with dementia might have real problems in anticipating future outcomes (as shown in the famous Anderson paper) or have problems in making accurate cognitive estimates (as discussed in the famous paper by Shallice and Burgess). The people with dementia for whom these problems are likely to surface are those with disruption of the functioning of a part of the brain known as the frontal lobe.

Also, I showed myself in 1999, published in Brain, that people in early stages of behavioural variant of frontotemporal dementia can be prone to make risky decisions. Others have argued it is more of a problem with impulsivity.

Nobody has any intention of turning people living with early stages of dementia into amateur accountants, but even with the basic budgets you need to have an ability to deal with income, expenditure, costing and reasonable forecasting.

So there is clearly an evidence base emerging that, despite full legal capacity, there are some persons living with dementia who are best not served by direct payments so that they can pursue their ‘choice’. But the introduction of this has been surreptitious, couched in language such as “empowering people with dementia to take control of their own risk behaviour.”

Such flowery language is best kept in marketing manuals, I feel. At a time when report after report has demonstrated that there is not a strong evidence base for improvement in clinical outcomes (such as falls for people with dementia), we must be able to ask for whose benefit are these self-directed budgets for people with dementia?

There is report after report of ‘widening the market’, complaining about the lack of quality ‘control’ of market offerings for dementia. And yet we simultaneously have a care regulator complaining regularly about the quality of dementia services in trusts in England. We have a poor evidence base on what level of budget is sufficient to allow a choice; clearly someone who has an insufficient budget cannot find a choice argument at all compelling.

And is the quality of market offerings being properly regulated to prevent fraud? The last few years has witnessed a series of seemingly attractive offerings for living well with dementia, some of which are extremely good (such as assistive technology, better design of wards and the home), and some of which are poor. There is insufficient evidence here too that the regulator is able to cope confidently except in the clearest examples of fraud.

There is much good work being done in social care and medicine, but with a drive for shiny, instant products, we must never lose sight of the fact that care from social care has been cut consistently over a long period of time. Whenever someone explains the case for personal budgets, there is almost certainly a concomitant explanation of an exploding care budget. However, it would be wrong to slash frontline care while touting ‘The Big Society’ in the same way it would be completely wrong to cut in real terms per caput allocations of care or to pursue backdoor rationing in the name of choice.