In Where Memories Go - Why Dementia Changes Everything, broadcaster Sally Magnusson recounts one family's heart-breaking, roller-coaster ride with this most misunderstood of conditions. Having experienced the care available to her mother, she concludes that dementia "confronts us with profound philosophical questions about what it means to be human and compels us to ask whether we have any right to call ourselves a civilised society".
Photo by Lighthunter via Deposit Photos
It's a very good question that's never been far from my mind as, for the past year, I've written about dementia from various angles - from the innovative methods of passionate people intent on improving the lives of those with the condition and their carers, to the stigma surrounding it, the language used to describe it, the power of the media to influence our views of it and - most importantly - the individuals and their families who live with it every second of every minute of every day. And to answer Sally's question, apart from some truly outstanding exceptions, the care of those with dementia in 21st century Britain falls far short of what might be expected from a civilised society.
Is it civilised to use - instead of specialist nurses - security guards to control people with dementia in hospital? Is it right that those with the condition are rarely granted admission to hospices but instead end up in hospital, a place guaranteed to add to their distress and confusion?
Is it right that people with dementia are frequently plonked into armchairs in care homes where they sit gazing, unseeing and uncomprehending, at mindless daytime TV which some, if not most, of them would never dream of watching in their own homes?
Would a civilised society place staff in those care homes with little or no training in how to treat people with dementia (who account for 80 per cent of their residents)? Would it pay many of those carers looking after our most vulnerable citizens less than my 16-year-old daughter earns babysitting?
My answer to all these questions is no. So how have we, a generally civilised bunch, allowed this to happen?
The answer involves society's humanity, or lack of it. It has to do with a collective mind-set that, while not condoning what is happening to the most vulnerable among us - in fact, we like to moan about all of the above - seems content to tolerate it. We don't put our money (in the form of higher taxes and higher wages for adequately trained carers whose profession is respected) where our mouth is. And our actions - or lack of them - give us away.
Of course, there are exceptions. And I'm the lucky one seeking them out. Most of my time spent writing about dementia is devoted to excellence and inspiration. I meet people on a mission to improve what's currently on offer and I'm hopeful that society's view is beginning to change. In part because more and more of us are being personally affected by the condition; if we don't have it ourselves, many of us know or are related to someone who does.
Dementia doesn't differentiate between rich and poor, educated and uneducated, actors and actuaries. True, 95 per cent of those who develop it are over 65. But it's also true that in the UK one in 14 of us over that age has it, that 42,000 people under 65 have it and that increasing numbers are speaking out about what it means to live with it and how we can help them to do so as well as possible.
In various places throughout the UK the quality of life of those with dementia is being improved by ensuring that their personal histories are known - through work such as that of the Life Story Network, reminiscence such as that practised by Dementia Care Matters, the art-based methods of Engage and Create, the literature of Living Words - so that everyone involved (carer and cared for) can relate to each other. It doesn't matter how it's achieved or what tools are used, the common thread is treating people as people, not symptoms - seeing the person, not the dementia.
My recent blog on what being dementia-friendly really means concluded that it wasn't about tokenistic gestures or labels, but thoughtful interventions such as that of the British Transport Police officer who enabled people with dementia and their carers to travel on trains, thus making the impossible, possible - with life-changing results. Several readers commented that being dementia-friendly was simply being friendly.
It is certainly about connecting with others. Perhaps the irony is that in this fast-paced world of 24-hour communication, non-stop texting and online shopping, we as a society have forgotten how to do just that.
Ever optimistic, I'd say that we are in a period of transition. Increased awareness of dementia is slowly reducing stigma, education is increasing our knowledge of how we can help. Could it be that dementia, that most feared of conditions, might ultimately result in us showing more humanity, compassion and kindness, not just to those unfortunate enough to have it, but to each other?