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Dementia and “the war against information”



It is perhaps easy to see why there is a session on ‘the war against information’ on today, this the first day of the Bilderberg meeting. The programme was helpfully disseminated by Wikileaks.

Healthwatch England has instigated a number of inquiries in the past over the barriers to poor care in dementia, and poor information has consistently been found to obstruct good care.

Poor information could be interpreted that there is none available to patients and users of dementia services. But this is unlikely to be the case. Due to the ‘internet of things’, you can even “ask Alexa” anything about dementia. Gone are the days where you would even want to quiz your GP on minutiae details over dementia perhaps.

Information does need to have some external standards though. The NHS Information Standard has had some success in maintaining safeguards so that the public can ‘trust’ information about dementia as NHS patients. One cannot help feeling though stopping fake claims about dementia is an impossible task, like King  Canute trying to “stop the tide”.

With so many political actors involved, it is however important to be able to see the wood from the trees. However, the claims are often heavily marketed and branded, and it can be unclear why certain ideologies are more correct than others.

Information is not necessarily the same as knowledge, which in turn not the same as wisdom necessarily. One may indeed wonder what the need for an experienced geriatrician, physician or psychiatrist Is in making a timely diagnosis of dementia, when a giant supercomputer can do.

Indeed, ‘big data’ have been successful at making the genome wide associations in dementia needed to make sense of the complicated inheritance patterns, revealing potential guidance on what sort of people are ‘at risk’ of developing dementia.

It is not however the volume of information which is the matter, but how it is communicated and chosen. This of course is pivotal, for example, if you might be choosing a residential home where you would like to live. Choice and control have been major drivers in the personalisation agenda of recent governments, manifest in a number of areas including personal budgets.

Information has of course to be retained long enough online and be processed appropriately. An inability to do this is part of the definition of where capacity is lost in English law. Capacity at one end is important in safeguarding certain people with dementia from making ‘bad’ decisions. However, it opposes the inalienability and universality of human rights, as specified for example in instruments such as the United Nations Convention on the Rights for Persons with Disabilities.

An over-reliance on software running on the “internet of things” is of course susceptible to a giant cyberattack, and there is worry that external agencies can dump malicious information worming their way into healthcare services. But it is important to embrace risk at all to ‘live well’ – similarly, we can’t be petrified that our computers, some helping with dementia services, are all about to shut down.

Finally, information like dementia friendly communities might seem instantly attract because of the appearance of cost neutrality. Indeed information may be cheap – but lack of wisdom in using it in dementia might be costly.





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