It has certainly been an interesting couple of weeks in England and Scotland, and on my last day here when we had planned to visit some dear friends south of London, we have both been too unwell so instead I have attempted to catch up on a few things like blogging, especially as I don’t think I have written nor posted even one blog since arriving!
The media has been very focused on dementia for this whole trip, as it had been Dementia Awareness Week in the UK just before we came, and was Dementia Awareness Week Scotland when we were there for the conference. Dementia has been ‘full on’ in the media here, and even if I didn’t live with it, I’d have had trouble getting away from the topic! As always, what has been on in the media has made me think about representation of dementia in general, so I just googled for images of “representation of dementia”.
Google Images came up with a cross section of images of brains, some of them negative, many medical, and also many of brains that are impaired. Other images included people looking sad, or staff and care homes looking happy (as if they are places we would want to live). Some were of mind maps, events, and about the types of dementia there are, including infographics and quite a few on statistics and symptoms.
Not that long ago, my searches almost only came up with sad-looking old people, old hands being held by younger ones, or graphics of disappearing brains, so it has changed a lot, even on Google Images! A couple of weeks ago, the Alzheimer’s Society UK produced a number of quotes about dementia, which I also found on my search, and the one featured here was used during their #DAW2016 activities, and it sounds like it was a quote from people, or a person actually living with dementia.
But onto representation of dementia, especially in the public domain. Most days I work at living in the denial bubble, and in particular ignoring that fact that I am struggling to speak, to think and often to function with even the simplest of tasks. I campaign globally for support to live beyond dementia, and for the discourse of suffering and tragedy to stop be the main messages promoted. However we continue to be bombarded with mostly negative narrative of living with dementia, with an almost complete focus on the losses and deficits. Even from many who publicly claim they are living well with dementia. This is especially devastating for the many newly diagnosed people who have received a diagnosis of a dementia, or those who have just started to become advocates and are starting to speak up publicly.
Yesterday in a meeting I heard that dementia is now the most feared disease for the over 40’s – I had previously heard that for the over 65 group, but was certainly concerned to hear yesterday it is now the most feared for people as young as 40. So if all we see and read about dementia is on the loss and devastation, on our grief and loss, our changed abilities, our loss of memories and capacity, and how hard it is for our ‘carer’s, then no wonder it is now the most feared disease. Like cancer, we all know the ‘horrors’ of dementia, and especially those of us living with it. Even though many living with it, and I would suggest virtually all until they are in the later stages and dying, have many good moments and good days, even many good years living quite well and beyond dementia. Many including me, even say it has been a gift, and that we have developed new creativity either because of dementia, or perhaps in spite of it.
Just for a change, could we please see something in the media celebrating the other side of dementia… I certainly hope it comes before I get onto a stage as a comedian!!! If we don’t, the many misperceptions and myths about dementia, the stigma, the discrimination and the isolation will almost certainly continue.