One of my mum’s ‘favourite books’ is “What the hell happened to my brain?” by her friend Kate Swaffer. Something that none of us predicted that the publisher, Jessica Kingsley Publisher, would arrange for different versions around the world to be produced, but some of the picture covers might get ‘lost in translation’.
The German version was originally somebody holding a balloon to his face. This, it is said, was supposed to signify somebody’s frailty in having dementia.
Amazingly, despite the legal paperwork of liabilities, third party liabilities and contract law, >500 complaints led to this book cover being withdrawn.
Indeed, with me now writing a book on frailty for Routledge with main forewords by Prof Ken Rockwood and Prof Adam Gordon, I can see how the two areas might have blurred together. Frailty, although no widespread international definition exists, broadly refers to a low resilience to and high vulnerability to stressors or shocks when tend to leave a person not fully recovered. This means that someone with cognitive frailty, for example, might easily get affected by an urinary tract infection to become frankly delirious or show cognition at levels of a severe dementia.
Cultural differences do exist. Indeed, if a charity were to market its logo abroad, for example in selling the brand of ‘dementia friendly communities’, if it had substantial financial resources, it might instruct a branding agency to advise on cultural implications (e.g. colour) of the brand in a foreign jurisdiction.
It is hard for any of us who are not German to understand the precise meaning of why somebody holding a balloon to his face is an accurate and reliable portrayal of dementia. Cultural differences are particularly important in English dementia service provision, for example in respecting equality and diversity for population sub-groups such as black and minority ethnic subgroups or lesbian, gay, bisexual or transgender individuals.
I don’t want to go into half a century of literature on ‘stigma’ which I am reviewing for my book on frailty here. I did briefly go into stigma for my 2nd book ‘Living better with dementia’ in the context of dementia. But I have been struck with how the worlds of ‘stigma’ and ‘prejudice’ often have overlapped.
The word ‘stigma’ originally means “mark”. In frailty, it might be obvious in that someone who looks physically frail might be “recognised when you see it”. But there is still the possibility that someone is actually frail who does not ‘look frail’, as identified for example by the Electronic Frailty Index.
And the age old question of ‘what does a person with dementia look like?’ might be relevant here. A person with dementia might not have two heads and four feet, for example. This may seem like a ludicrously defensive statement, but the statement is still often made around the world: “But you don’t look like a person with dementia.”
Stigma is problematic as it can create a sense of “otherness”, at worst a different class or even subclass of “human beings”. This might get inadvertently exacerbated if that class gets their own award ceremonies (“most exceptional person with dementia”) or be the subject of accolades (“awards for dementia friendly communities”).
Unfortunately, what can be somebody’s stigma can be another person’s well intended brand. But the sense of ‘otherness’, or being different, is definitely one to watch out for, as it can engender a sense of inferiority. Stigma, for example, is enough for people with mental health issues such as schizophrenia and psychotic delusions to stop engaging with health and social care services.
Arguably, the sense of ‘otherness’ and ‘differentness’ is not particularly helped when a CEO of an international dementia charity excitedly tweets on a person with dementia speaking, “you could hear a pin drop”, as if that person with dementia is a tenth wonder of the world but not in a good sense.
The significance of stigma for me is that it can lead to individuals being labelled with an overriding narrative of power dynamics, whether from powerful charities or clinicians. This is worth looking out for, whoever you are.