In recent years, the term “dementia sufferer” has effectively been outlawed among care professionals (although the media have yet to catch up), with the positive aim of redefining the status of those who experience the syndrome and banishing "victimhood".
Two main alternatives have emerged: “people with dementia”; and “people living with dementia” – neither of which trips smoothly from the tongue. Leaving aside the wider debate about language (to which I may return at a later date), one can applaud the concept of acknowledging the person first and the condition as subsidiary. But there is another plus of the latter term: it can arguably encompass others drawn into the web of a loved one’s dementia.
According to the UK Alzheimer's Society (2014), there are currently 850,000 people with dementia in the UK and 670,000 carers of such. That’s probably an underestimate, given the vagaries of diagnosis and identification, and it will grow exponentially as the population ages, but even so – over 1.5 million people already living with dementia, in the sense that their lives are affected on a daily basis.
|Photo: BBC News
The data also projects that “family carers of people with dementia save the UK over £11 billion a year”. But what concerns me is the wider “cost”, which is far more than money. I know; I’ve been there.
This blog is not a chronicle of daily care or an advice site; there are many others to fulfil those needs. Here, I’ll be posting occasional thoughts for debate pertinent to carers of people with dementia and other interested parties, and links to articles I’ve written elsewhere on the subject. (See my other blog for stage, screen, and fiction writing.)
|Photo: BBC News
For all the media and political attention, no-one truly understands – or wants to know – what dementia means until it directly affects them; but with greater life expectancy, it’s more than likely we shall all be touched by it some day.
I want to remind the wider world that, while it may never be "sexy", it’s not a sideline issue – not only the elderly “live with dementia”.