I feel sharing knowledge about dementia is important. This is not privileged information.

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A few weeks ago, I gave a talk for the policy satellite session for the world Alzheimer’s Disease International conference on whether knowledge about the risk of developing dementia lent itself to private insurance markets.

The basic issue is this.

Some time in the future you might consent to0 have a full genetic screen of yourself done, and the information made available to the State. The question is: what you do with the information about your risk for dementia (assuming some of it can be validly determined from your genes not the environment).

Would you behave more ‘riskily’ if your chances of dementia were low? Or if you were at high risk would you take out an insurance policy knowing you had a lot to gain if you developed dementia?

Information is at the heart of insurance systems. There are key planks of dementia policy around the world which rely on high quality information: they are risk and choice.

If you’ve been given a diagnosis of dementia you can’t live your life in a cocoon arguably: you need to embrace risk to live better with dementia.

A choice, if you have enough money to make your choice, features in a number of ways for a person living with dementia: for example, your decision to live at home, an ‘extra care setting’ or a residential setting like care home or nursing home.

Statistics provided through the Alzheimer’s Disease International currently estimate that there are about 47 million people living with dementia. In the UK, there are probably about 800,000.

Knowledge on the whole can be empowering. It is thought for example that if more people knew about what the dementias are they would be less frightened of dementia.

Or knowledge itself can start fear. Suppose I told you you had ‘pre dementia’, so that you were in the first stage of dementia, except you currently had no symptoms.

You could turn this fear into power. Theoretically, you could alter your lifestyle to reduce your chances of developing dementia.

Every few weeks, I run a fifty minute information session at my law school where I indeed graduated from my law school. I feel that it is a duty to pass on this knowledge, through the successful ‘Dementia Friends’ programme.

As I am also an active researcher in dementia, writing books and presenting at conferences, I feel it is an honour to encourage members of the public sufficiently they wish to pass on knowledge about dementia to others.

I first knew of this in my junior physician training; the approach of ‘see one, do one, teach one’ later got formalised for me in the teachings of something called “Miller’s pyramid”.

But passing on knowledge is a privilege.

There is no proportionate need to keep this knowledge about what the dementias are ‘confidential’. The chances are that virtually all members of my audiences know somebody who know somebody living with dementia.

Whatever one’s politics, it is very enjoyable to live in a country which promotes an ethos of knowledge sharing about dementia, and research.

What is not so nice is witnessing a social care system on its knees, as the governing parties appear to creep reluctantly towards ‘integrated care’.

 

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