Exclusion zones

Exclusion zones - DDN feature on alcohol-related brain damageAlcohol-related brain damage (ARBD) is a term used to describe a spectrum of conditions characterised by prolonged problems with memory, reasoning, emotional regulation, and daily function due to excessive alcohol consumption.

It can be experienced on a continuum from very mild to extremely severe, and people directly affected by ARBD are typically male, socially isolated, living in deprived areas and 50 to 60 years old – although younger people are increasingly being identified. A growing body of evidence suggests that women may develop ARBD following a less severe alcohol consumption history, placing younger women at increased risk compared with their male counterparts.

The term ‘brain damage’ itself may suggest to many of us non-medical people that it’s an irreversible, degenerative condition, but a large proportion of patients may recover to some degree with abstinence and appropriate rehabilitative support. Yet existing services consistently fail to meet the needs of people with ARBD, leaving many comparatively young people requiring long-term supported living arrangements for a potentially reversible condition. Stigma plays a key role in why this happens.

brain damage 1Sadly, people who live with ARBD and their families and carers experience a wide range of complex stigma-related barriers to effective care. For the Anti-Stigma Network then, this is clearly an important area of focus. Furthermore, it seems ARBD is much more prevalent than we might currently understand. The intersecting and overlapping stigma experienced by people who live with ARBD can have a particularly severe, and additive, impact on their quality of life, access to services and, ultimately, recovery.

For a condition that often goes unrecognised or undiagnosed, determining prevalence is a challenge but a number of international studies indicate a population range of 0.015 per cent in Australia to 0.14 per cent in some areas of Scotland. Prevalence as high as 21 per cent, however, has been reported among the homeless populations of Glasgow. To put this into context, a recent study in France suggests that 38.9 per cent of early-onset dementia cases were in fact alcohol-related. When applied to the UK population of those living with young-onset dementia, this may be as many as 27,000 people. This of course does not include the large population living with alcohol-related cognitive impairment who are not detected because they are not engaged with standard memory services, for example.

alcohol-related The Addictions Research Group at the University of South Wales is seeking to improve its understanding of ARBD – from patient engagement, outcomes, service delivery and innovation perspectives. The first step the group has taken towards this is the development of an educational, and awareness raising, training package for healthcare pro­fess­ionals (available here).

Dr Darren Quelch
Dr Darren Quelch is senior research assistant working in the Addictions Research Group at the University of South Wales. The Addictions Research Group has recently been awarded a grant from Welsh government to start working towards improving service delivery for those at risk of developing, or living with, ARBD. This work will bring together interested health partners to map out current services for ARBD and plan pathways from initial identification of symptoms to discharge from treatment.

‘By increasing awareness and the understanding of those engaging with individuals living with alcohol use disorders, we hope that more people will make the connection between harmful levels of alcohol consumption and confusion, forgetfulness or atypical behaviours in the patients they see in front of them day to day,’ says senior research assistant at the University of South Wales, Dr Darren Quelch. ‘We hope that by doing this, not only will it help facilitate further assessment and detection of ARBD in patients with alcohol use disorders, but it will also act to reduce some of the stigma surrounding alcohol dependence and ARBD.’

‘There is a huge lack of availability and consistency of ARBD services across the UK,’ says Quelch. ‘Many patients fall through the gaps of existing services for memory problems due to a variety of reasons – for example age, current dependent patterns of drinking, or lack of a formal diagnosis. This work will start the process of formalising services dedicated to those with ARBD. We are in conversation with our health partner experts, mapping examples of good and complete provision whilst simultaneously noting barriers or gaps in services. We hope that by working with our colleagues in health services, we will be able to generate a service delivery pathway template, that is acceptable, inclusive, and impactful for patients, feasible for health services to deliver, and translatable to regions outside of Wales.’

alcohol brain damageSo what’s driving the negative attitudes and beliefs people very often experience, and that mean accessing appropriate care can be so difficult? The combinations of stigma experienced are complex but we might simplistically list a few of the characteristics of ARBD-related experiences that help us understand what’s happening.

Firstly, this is an alcohol-related condition and as such people suffer from misattributed judgements related to addiction – that addiction is self-inflicted harm as a result of a moral failing. These beliefs surrounding personal responsibility tend to span the majority of alcohol-related conditions. Furthermore, we seem to have a much greater understanding of the impact of alcohol on our livers, and the link between alcohol and cancers, for example, but relatively less understanding of the detrimental effects of alcohol on the brain. These factors potentially give rise to additional attribution errors whereby we relate the symptoms of ARBD (such as disinhibition, impulsivity, or unpredictable behaviours) to the personality of the affected person rather than their health condition.

ARBD affects people’s ability to process information and plan future actions. In practice this means people find it hard to engage in a structured manner in their own care planning and attendance at organised healthcare appointments. This means people are more likely to turn up late or miss appointments and use emergency or crisis services. Therefore, people may experience negative attitudes from over-burdened health and social care professionals working in busy and stretched services – especially when non-attendance at planned healthcare appointments has become a source of social disapproval and policies to fine people for missed appointments have been floated by government.

ARBDAs a group requiring specialist support, people can fall between the cracks – seen as too complex or challenging for alcohol treatment services whilst not fitting the typical profile for disability or dementia services.

Medium term, specialist residential care and support is a treatment option for people with ARBD, but accessing funding can be complicated. A lack of advocacy for the individual in question may underpin this. This can be secondary to patient factors, for example social isolation or minimal family support, and healthcare service factors, such as limited awareness of treatment avenues or service availability. Funding processes for residential care can disproportionately favour those who are impacted to a lesser degree by ARBD and people best able to advocate for themselves – for example those who demonstrate higher levels of organisational and motivational skills that can engage in funding processes for residential treatment programmes, or those able to gain advocacy through existing healthcare services.

So people with ARBD find themselves in a particularly marginalised situation, forced into navigating a system that doesn’t work for them. And yet there’s great inclusive practice for both ARBD-specific care and harm reduction. In future articles we’ll look at how best practice can mitigate stigma-related barriers.

Right now though we need your help. Hopefully you can see why this is an important area for the Anti-Stigma Network to help address. We’re keen to speak to people with lived experience of ARBD in order to bring their experiences of accessing health and social care to life.

James ArmstrongIf you know of anyone willing to share their story contact us at the Anti Stigma Network (ASN)

James Armstrong is director of marketing and innovation at Phoenix Futures

We value your input. Please leave a comment, you do not need an account to do this but comments will be moderated before they are displayed...