In 2012 I received a phone call from a distraught man asking for my help. Let's call him Mr Smith. He explained to me that his wife, aged 42, had just been diagnosed with Korsakoff’s Syndrome, a type of alcohol-related brain damage (ARBD) that presents much like dementia. She was unable to remember the simplest and most important of things – where the kitchen was, the names of their three children.
Mr Smith, a 39 year-old accountant, wanted to know where he could get support for himself, his wife and their young children. He’d tried dementia charities (“Sorry, it’s not really our field.”), older age charities (“Sorry, she’s not very old, is she?”), carers’ support groups (“Er, sorry, we don’t really know about alcohol problems.”) as well as social services (“Sorry, there’s nothing that we can do.”) Even Mrs Smith’s GP couldn’t offer any advice.
He’d tried dementia charities (“Sorry, it’s not really our field.”), older age charities (“Sorry, she’s not very old, is she?”), carers’ support groups (“Er, sorry, we don’t really know about alcohol problems.”) as well as social services (“Sorry, there’s nothing that we can do.”) Even Mrs Smith’s GP couldn’t offer any advice.
To be honest, I didn’t know much about ARBD either but I assured him I’d do my best to find out what services were out there that could help. A week later I was still looking. I’d unearthed a few research papers, a couple of specialist residential units and the knowledge that the condition can be treatable, but not much else.
The more I searched, the more I found that people with Korsakoff’s and similar alcohol-related conditions fall through the care gaps. They don’t turn up to appointments because they don’t remember that they’ve made them. They miss out on benefits because they have difficulties with the forms. They are uninhibited or aggressive and considered difficult to work with. They find financial planning difficult and can’t keep a tenancy so often end up homeless. There’s a notion that they don’t want help, they’re in denial or that their problems are self-inflicted.
Still, if we take away the AR (Alcohol-Related) and focus on the BD (Brain Damage) we may feel more sympathetic to this group of people that struggles with the everyday tasks that we take for granted.
For people with ARBD, and the people who love and care for them, there’s a huge stigma hurdle to overcome, not to mention a lack of services that are willing or able to help. This is particularly unfortunate as, unlike some other forms of brain injury, ARBD conditions such as Korsakoff’s can be treatable. Rehabilitation is long and intensive but there’s hope. Especially if we focus on the BD, not the booze. The Smiths are as deserving of all that our care system can provide as any other family faced with a brain injury.
Since that first conversation I’ve had numerous calls and emails from people like Mr Smith – husbands, parents, siblings, children – all wanting to know what they can do next, how they can move forward. Four years on from that initial phone call, I’m pleased to say that things are getting better. Slowly, for sure – but awareness and acceptance are growing, and the number of services available increasing. National guidance on diagnosis and treatment has recently been published by the Royal College of Psychiatrists and our website now has an ARBD information section.
There’s so much more to be done. But if you’re reading this, Mr Smith – you might finally be able to get the help you and your family need and deserve.
