Underdiagnosed, undertreated and on the rise – getting to grips with alcohol-related brain damage (ARBD)

Guest blogger Andrew Misell, Director of Alcohol Concern Cymru, explains what Alcohol Concern has been doing in recent years to promote better understanding of alcohol-related brain damage (ARBD) and better support for people with the condition and their carers.

“Alcohol was mentioned as a possible cause five days before he died. The consultant told me that the dementia was most likely caused by alcohol.”

“I looked up my symptoms and thought I may even have Parkinson’s Disease. I didn’t even know that alcohol-related brain damage existed until somebody said I had it”

Every since Karl Wernicke and Sergei Korsakoff, in the 1880s, noticed symptoms of confusion and confabulation in their patients, it’s been clear that long-term heavy drinking can have a devastating effect on the human brain. But somehow, 130 years later, it seems that the message about alcohol-related brain damage (ARBD) is still getting lost in the system. The two comments above are sadly typical of many people’s experiences.

General medical wards, care homes and dementia facilities are still hosting many people who’d be much better off receiving specialist rehabilitation that recognises that alcohol dependency is the root-cause of their illness. Many conscientious professionals realise that they’re seeing people with ARBD week-in week-out, but don’t feel that they have the expertise to help them, nor anywhere suitable to refer them on to. The tragedy of all this is that with the right help, someone with ARBD can recover some or all of their mental and physical capacity.

We’re under no illusions. We know that a small charity like Alcohol Concern is not going to transform ARBD services overnight. What we thought we could do was plug some of the information gaps that leave so many families, cares and professionals feeling so powerless. With that in mind, and with a grant from the Garfield Weston Foundation, we have created an online hub of ARBD information, and delivered ARBD training to frontline staff around the country.

The hub includes:

  • A series of easy-to-read factsheets on causes and symptoms, diagnosis, treatment and support
  • Legal factsheets on the routes it may be appropriate to take if someone with ARBD lacks capacity to make major decisions for themselves: advance decision making, lasting power of attorney, and use of Mental Capacity Act
  • An in-depth support manual for families and carers
  • A quick guide to the condition for professionals.

We’ve delivered ARBD training to more than 300 frontline staff so far, attracting practitioners from a range of sectors. Our aims have been to enable learners to:

  • Define ARBD, its prevalence and impact
  • Identify risk factors and how risk can be reduced
  • Recognise signs and symptoms
  • Explore the stages of rehabilitation
  • Use simple approaches to improve outcomes
  • Signpost patients and their carers to further support.

We’re proud of what we’ve managed to achieve so far, but we also know it’s a drop in the ocean. The issue of ARBD isn’t going away any time soon. If anything, if we are able to improve recognition of the condition, there’ll even more work to do to support those patients who were previously undiagnosed and untreated. International post mortem studies have found signs of Wernicke-Korsakoff’s Syndrome in around 1.5% of brains – a figure that would suggest nearly 1 million people in the UK have some form of the condition. Even if that figure’s wide of the mark, we know that there are a lot of people out there living with ARBD without anyone realising what’s making them the way they are; and as the Scottish Government warned back in 2004, the age at which people present with ARBD symptoms is getting lower.

Given all this, we’re keen to do more:

  • Develop our hub into a real online forum for ARBD information exchange and learning
  • Develop our training: we have initially provided one-day courses but many participants have said that they need more time than that to get to grips with this complex and challenging topic.

– Andrew Misell, Cyfarwyddwr / Director, Alcohol Concern Cymru

If you’re interested in working with us to improve the recognition and support of ARBD in primary care, or if you’d like to know more about our training offer, please contact Andrew Misell at Alcohol Concern on 029 20226746 or e-mail arbd@alcoholconcern.org.uk.

To visit the online ARBD hub and download our factsheets, go to: www.alcoholconcern.org.uk/arbd