20. People with alcohol related brain damage
How to prevent, identify, assess and treat alcohol related brain damage (ARBD) using brief cognitive assessment, harm reduction, multidisciplinary pathways for comprehensive assessment and treatment planning, adapted interventions for cognitive impairments and long term support.
Alcohol related brain damage (ARBD) describes various psychoneurological or cognitive conditions that are associated with long term, heavy alcohol use and related vitamin deficiencies (particularly thiamine deficiency).
Local health and care partnerships (for example integrated care boards, health and care boards or health boards) should develop joined up, multidisciplinary, person-centred pathways. This is so people have access to appropriate interventions for the full spectrum of ARBD.
Local health and care partnerships including strategic managers, lead clinicians and commissioners should act to reduce barriers that people with ARBD can experience when trying to access local pathways for neurological disorders or cognitive impairment.
Alcohol treatment services should intervene to prevent the onset of ARBD by:
- raising awareness of the harm it causes and offering harm reduction advice
- prescribing thiamine supplementation
- providing well managed medically assisted withdrawal to reduce the risk of withdrawal complications
Alcohol treatment services, primary, community and secondary health care services should include a brief cognitive assessment as part of the routine assessment of people drinking at harmful levels and people experiencing alcohol dependence.
Where the brief cognitive assessment indicates the person may have some cognitive impairment, clinicians should refer them for a comprehensive multidisciplinary assessment. This should include a measure of functional ability.
Services that do not have access to staff with specialist competences in ARBD should refer people for specialist multidisciplinary assessment and diagnosis through the local pathway for ARBD. Where no specialist ARBD pathway exists, services should use the standard pathway for neurological conditions. Diagnosing people with ARBD early increases their chances of cognitive improvement.
Services should work together to:
- develop a comprehensive multidisciplinary management plan for people diagnosed with ARBD
- allocate a keyworker with expertise in ARBD (or cognitive impairment where no ARBD specialist is available)
Involve family members where appropriate.
Abstinence is crucial to support cognitive improvement. So, services should re-assess the person with ARBD regularly over 3 years and adjust their plan accordingly.
If a person with ARBD continues to drink, services should continue to offer multidisciplinary psychosocial support and prescribe thiamine.
Services should offer multidisciplinary support and rehabilitation tailored to the stage of the person’s recovery from ARBD. Adapt psychosocial interventions and neurological rehabilitation strategies to take account of the level of a person’s cognitive impairment.
Once the person has reached their optimum level of cognitive function, services should arrange access to appropriate long term support or care for people with permanent ARBD. This should be tailored to their level of need.
There are specific considerations for assessing mental capacity to make a decision in people with ARBD who have ‘executive functioning’ difficulties. Executive functions are a range of cognitive processes that include planning, organising, prioritising, working memory and self-regulation. People with executive functioning difficulties may be able to describe how they would carry out tasks but not be able to carry them out in practice. So, it’s important to gather information from family or carers. One assessment may not be enough.
20.2.1 Definition of ARBD used in these guidelines
Alcohol related brain damage as an umbrella term
Alcohol related brain damage (ARBD) describes various psychoneurological or cognitive conditions that are associated with long term, heavy alcohol use and related vitamin deficiencies (particularly thiamine deficiency). ARBD describes a spectrum of disorders of varying degrees of severity. Severe ARBD can affect a person’s life to such an extent that independent living is no longer possible but many people with ARBD can live in the community with appropriate support.
Psychoneurological or cognitive conditions described as ARBD include:
- Wernicke-Korsakoff syndrome
- alcohol related traumatic brain injury
- cognitive impairment resulting from multiple episodes of withdrawal
- vascular brain injury
These different causes can all result in ARBD and there will be similarities in how the person presents regardless of the cause of ARBD. There are also some differences in presentation that a full specialist neuropsychological assessment would be able to pick up, including a measure of the person’s day-to-day functioning.
ARBD is not a progressive condition like dementia. If clinicians can identify it at an early stage and the person can stay abstinent, then the prognosis can be good. So, it is very important to prevent, identify and treat ARBD. This requires establishing joined up, multidisciplinary, person-centred pathways that take account of the complex range of factors involved in preventing and managing ARBD.
The modified Oslin criteria
The modified Oslin criteria (Oslin and Carey, 2003) provides a useful framework for identifying possible ARBD as a set of conditions based on:
- evidence of cognitive impairment (confirmed by clinical examination or using appropriate tools, for example the mini-Addenbrooke’s cognitive examination III (mini-ACE) assessment tool (PDF, 65.1KB)
- significant alcohol use, defined by the minimum average of 35 standard drinks (or 50 units) per week for men and 28 standard drinks (or 35 units) for women for more than 5 years - the period of significant alcohol use must be within 3 years of the cognitive deficits’ clinical onset
Although the use of brief cognitive assessment tools can alert the clinician to the possibility of ARBD in a person at risk, they cannot confirm this. A thorough multidisciplinary assessment led by a neuropsychologist or other suitably trained clinician is needed to confirm a diagnosis of ARBD (see section 20.6 below).
20.2.2 Wernicke-Korsakoff syndrome
Wernicke-Korsakoff syndrome is a form of ARBD that comprises:
- an acute brain syndrome (Wernicke’s encephalopathy)
- a more chronic condition, Korsakoff’s syndrome (previously known as Korsakoff’s psychosis)
Wernicke’s encephalopathy is an acute medical emergency where alcohol withdrawal and lack of vitamin B1 causes inflammation of the brain. It has a high mortality rate and may lead to Wernicke-Korsakoff syndrome if it is not treated with intravenous vitamin B1. You can find guidance on managing Wernicke’s encephalopathy in section 16.9.4 in chapter 16 on acute settings.
The 3 main symptoms of Wernicke’s encephalopathy are not always present. These are:
- unusual eye movements
- confusion
- ataxia (unsteady walking)
So, clinicians must be very aware that all people with a history of alcohol use disorder who have even one of these symptoms could have Wernicke’s encephalopathy.
Korsakoff’s syndrome refers to a chronic amnesic disorder with a pattern of:
- severe short-term memory impairment
- varying impact on longer term memories
- possible presence of confabulation (false memories arising from the action of the amnesic brain to make sense of current circumstances)
20.2.3 Managing ARBD
People with ARBD need to remain abstinent from alcohol for their cognition to improve as a result of not being exposed to the direct toxic effects of alcohol. Cognition can begin to improve as soon as the person stops drinking and can continue to improve substantially for 3 to 6 months if they remain abstinent. During this time, someone who lacked mental capacity to make decisions about various aspects of their care due to ARBD may regain capacity.
While people usually experience most cognitive improvement in the first 3 months of abstinence, people who remain abstinent can continue to experience varying degrees of improvement for up to 3 years.
The Royal College of Psychiatrists (RCPsych) college report Alcohol and brain damage in adults (PDF, 1.95MB) (CR185) recommends improving a person’s cognition through:
- progressive socialisation
- training in daily living activities like cooking
- alcohol education
When the person achieves what is likely to be their optimal level of cognitive function, based on ongoing clinical assessment, practitioners should support them to access an appropriate setting (for example, independent living, supported living or residential care). About 50% to 70% of patients who are actively and appropriately managed and remain alcohol-free will show improvement in their psychosocial functioning.
22.2.4 Evidence for preventing and treating ARBD
Most of the literature about preventing and treating ARBD is made up of case reports, correlation studies and case control studies. So, most recommendations in these guidelines are made using evidence from:
- evidence summaries developed from systematic reviews
- guidelines developed from systematic reviews
22.2.5 Care pathways
In many parts of the UK, care pathways for people with ARBD are not well established and this can lead to people not receiving the care they need when they need it.
There are a few specialist services for ARBD and some areas have staff with ARBD specialist expertise. However, where this is not available, it’s important that local health and care partnerships (for example integrated care boards, health and care boards, health boards) collaborate and agree pathways so that relevant services can identify people with potential ARBD. They can then refer them for:
- comprehensive specialist assessment
- appropriate treatment
- rehabilitation
- social care and housing support
There should be an identified service for leading on a specialist comprehensive assessment of their neurological or cognitive conditions and on multi-agency management plans. This would need to be a service with specialist expertise in neurological conditions or cognitive impairment. While alcohol treatment services will have a role, they do not usually have expertise in neurological and cognitive conditions. Alcohol treatment commissioners, and commissioners, strategic managers and lead clinicians for the local healthcare system can help to identify the need for appropriate pathways within their local partnerships.
There is emerging good practice in some areas. The Welsh Government guidance Substance misuse: prevention, diagnosis, treatment and support for alcohol-related brain damage incudes recommendations for establishing dedicated ARBD services. It also provides examples of how health and care systems can work together to meet the needs of people with ARBD.
20.3.1 People at higher risk of ARBD
Health and care staff, including staff in alcohol treatment services should take high risk groups into account when targeting brief cognitive assessments, raising awareness and referring for specialist multidisciplinary comprehensive assessment.
Higher risk groups include people:
- drinking at high-risk levels
- with a low body mass index (BMI)
- who regularly miss meals
- who have had multiple episodes of withdrawal (both treated and untreated)
- with previous episodes of complicated withdrawal
- with a long history of harmful drinking or alcohol dependence
- with other conditions associated with thiamine deficiency such as peripheral neuropathy and cerebellar disease (Thomson and others, 2009)
20.3.2 Identification and assessment in community health and care settings
People with ARBD can present at a wide range of health and care settings including alcohol treatment services. Staff in health and care settings should consider the possibility of ARBD in any person who is drinking at harmful levels or has done so previously.
Staff in community alcohol treatment services should routinely carry out a brief cognitive assessment as part of comprehensive assessment. They should then refer people needing more specialist neuropsychological assessment through locally agreed pathways to services for neurological disorders or cognitive impairment.
Healthcare staff should carry out a brief cognitive assessment during the initial assessment period and repeat it at appropriate intervals to review progress.
There are several formal assessment tools that staff can use to identify the possibility of cognitive impairment. Healthcare staff (including alcohol treatment staff) who are trained to do so can routinely use the mini-ACE tool to identify possible ARBD across all settings. The longer Addenbrooke’s cognitive examination III (ACE III) is also available for suitably trained clinicians. It is important that brief cognitive assessments include tests of frontal lobe function. These assessments can alert staff to the possibility of cognitive impairment that can then be further investigated by specialists.
The Oslin criteria recommend that people should be abstinent for 3 months before having brief cognitive assessments. However, clinicians should take a pragmatic approach to cognitive testing and should be clear on the distinction between using it as a diagnostic instrument as opposed to using it as a screening tool. Brief cognitive assessment in a person who is acutely intoxicated is of no value. But clinicians can test a person who is currently drinking if they recognise that there will be some acute effects of alcohol, such as acute memory impairment, that should resolve when the person stops drinking.
Thorough, holistic and multidisciplinary assessment is required to confirm the presence or absence of ARBD. Where the brief cognitive assessment indicates the person may have some cognitive impairment, healthcare staff should refer them for a full comprehensive assessment that is led by a neuropsychologist or other suitably trained professional. It is important that the assessment incorporates some measure of functional ability through formalised assessments involving specialists such as occupational therapists and information from the person, family members and professionals. Speech and language therapists can also provide input to a multidisciplinary assessment.
20.3.3 Brief cognitive assessment in acute hospital settings
Treating people with alcohol dependence admitted to acute hospitals is often complex. Comorbidities that can confuse the picture include:
- infection
- hepatic encephalopathy
- pain
- mental health issues (such as depression)
Alcohol related cognitive impairment can easily be missed by acute hospital teams. So, it is important to have broad criteria to alert clinicians to the possibility of ARBD so they can carry out further assessment. Suitable criteria include:
- probable history of heavy, long-standing alcohol consumption (see Oslin criteria in 20.2.1 above)
- confusion, memory problems, doubt about mental capacity to make decisions about aspects of their care and concerns about risk on discharge, after withdrawal or physical stabilisation
- 3 or more admissions into hospital or the emergency department in one year, either directly (withdrawal, unconscious) or indirectly (trauma, organ diseases) associated with drinking alcohol
ARBD is preventable. There are several ways in which specialist alcohol treatment services and broader healthcare services can contribute to prevention.
20.4.1 Raising awareness about the effects of alcohol on the brain
Research has found that knowledge of the damaging effects of alcohol on the brain is poor among people with ARBD and some healthcare professionals (Heirene and others, 2018; Wilson, 2011). Raising awareness of ARBD at a population level ensures that people at risk can make informed choices about their drinking. The Royal College of Psychiatrists has produced ‘Alcohol related brain damage patient and public information leaflet’ (in RCPsych college report CR185, page 73) and Alcohol Change UK has several ARBD factsheets.
20.4.2 Thiamine and advice on diet
Wernicke-Korsakoff syndrome is caused by thiamine deficiency. Once a clinician identifies harmful or dependent drinking in a patient, they should:
- give them advice on diet
- prescribe thiamine supplementation
- screen them for cognitive impairment
- be alert to any signs of Wernicke’s encephalopathy
Section 10.4.3 in Chapter 10 on pharmacological interventions has detailed guidance on prescribing thiamine to prevent Wernicke-Korsakoff syndrome and assessing patients for potential Wernicke’s encephalopathy.
20.4.3 Advice against suddenly stopping drinking for people with alcohol dependence
For physically dependent drinkers, clinicians should outline the dangers of precipitated withdrawal after stopping drinking suddenly. Research suggests that the more withdrawal episodes a person experiences, the more likely they are to have cognitive impairment (Wagner Glenn and others, 1988; Loeber and others, 2010). Clinicians should advise patients against stopping drinking suddenly and offer an assessment for medically assisted withdrawal.
You can find guidance on prescribing for medically assisted withdrawal in sections 10.3 and 10.4 in chapter 10 on pharmacological interventions.
20.5.1 Anticipate withdrawal and identify early withdrawal
Unmedicated or poorly medicated alcohol withdrawal can progress to complicated forms of withdrawal associated with ARBD. Wernicke’s encephalopathy is directly linked to ARBD, and delirium tremens and seizures can also be risk factors for this. So, clinicians should identify and treat withdrawal as soon as possible.
Clinicians should closely monitor people with a higher risk of developing ARBD.
See section 20.3.1 for a list of people at higher risk.
20.5.2 Use evidence-based protocols for medical management of withdrawal
Clinicians should use evidence-based protocols for routine and more complicated withdrawals. There is detailed guidance in sections 10.3 and 10.4 in chapter 10 on pharmacological interventions for medically assisted withdrawal, including prescribing prophylactic oral or parenteral thiamine to reduce the risk of developing withdrawal complications leading to ARBD.
20.5.3 Identify and treat co-occurring illness
A patient is more likely to progress to complicated withdrawal if they have a co-occurring illness, such as an infection or gastrointestinal bleed. Early diagnosis and treatment will reduce this risk.
20.5.4 Identify and treat Wernicke’s encephalopathy
Wernicke’s encephalopathy is a complication that can occur in withdrawal. Clinicians should treat Wernicke’s encephalopathy as an emergency and manage the person in an acute medical setting. Clinicians who identify cases in the community should transfer the patient to the emergency department of an acute hospital setting immediately.
When a clinician has identified a patient with Wernicke’s encephalopathy, they should be given immediate treatment with intravenous thiamine. Section 16.9.4 in Chapter 16 on alcohol care in acute hospital settings provides detailed guidance on prescribing and administering intravenous thiamine.
20.6.1 Early diagnosis of ARBD and referral into appropriate service
People with ARBD can present to:
- healthcare services with an acute condition such as Wernicke’s encephalopathy
- services in the community following a gradual decline in cognitive abilities
By diagnosing ARBD early, clinicians with expertise in neurological and cognitive conditions can deliver appropriate interventions to increase the person’s chances of cognitive improvement.
Early diagnosis also enables healthcare staff to make prompt referrals to appropriate supported accommodation and social care if necessary. Supported accommodation can help some people with ARBD to improve their day-to-day function and reduce their likelihood of returning to harmful drinking. However, ARBD is consistently underdiagnosed because of a lack of awareness among clinicians (Wilson and others, 2012) and many people are not identified until their cognitive impairment becomes severe. It is important that clinicians investigate the main cause of any cognitive impairment and distinguish ARBD from other conditions.
People at risk of ARBD often have additional intracranial pathology affecting their cognitive and other functional abilities, for example:
- traumatic brain injury
- vascular brain injury (damaged blood vessels causing intracranial bleeding)
- dementia
- acute conditions, such as hepatic encephalopathy (liver-related brain dysfunction)
So, comprehensive assessments should ideally include:
- neurocognitive testing (carried out by appropriately qualified professionals)
- brain scans
- appropriate blood tests
- functional assessments by occupational therapists and speech and language therapists
All patients with ARBD should have a comprehensive management plan drawn up when they are first diagnosed. RCPsych college report CR185 recommends that every patient has a designated keyworker who has expertise in assessing and treating adults with cognitive deficits.
20.6.2 Regular follow-up and re-evaluation
After diagnosing a person with ARBD it is important that clinicians review them on a regular basis. This is so they can assess any improvements in cognition and functioning and make appropriate changes to the management plan. The Royal College of Psychiatrists recommends reassessing a patient’s cognitive function 3 months after the initial assessment. Clinicians should then repeat this every 6 months for 3 years.
It is also important to reassess a person’s cognitive function so that if it deteriorates despite not drinking alcohol, clinicians can investigate other potential causes of cognitive impairment.
20.6.3 Maintaining abstinence from alcohol
Maintaining abstinence from alcohol is crucial to support cognitive improvement. For people with established ARBD (when their cognitive function has reached optimal level) who have stopped drinking, it is important that clinicians (including alcohol treatment workers) provide ongoing support to maintain this.
Clinicians will need to adapt standard psychosocial interventions and neurorehabilitation strategies for people with cognitive impairment (see section 20.7.6 in this chapter). Clinicians should also consider prescribing relapse prevention medication. There is guidance on prescribing relapse prevention medication in section 10.5 in chapter 10 on pharmacological interventions.
20.6.4 People who continue to drink alcohol
For people who continue to drink alcohol (and have mental capacity to make decisions to do so), alcohol treatment staff should try to keep them attending services. They should do this by using approaches such as motivational interviewing (appropriately adapted for people with cognitive impairment) and helping them to access peer support. Flexible engagement approaches such as assertive outreach can help to support people who are unlikely to attend service bases (see chapter 9 on assertive outreach).
Practitioners should also provide people with information on what services can offer in a way that they can understand. For people not currently engaged in treatment, practitioners should try to maintain contact and be alert for signs of:
- increased motivation to engage
- the loss of mental capacity to make decisions to consume alcohol or make other decisions about aspects of their care and support
Other health and care staff should also be alert for these signs so they can make appropriate referrals.
People with alcohol dependence who continue to drink often experience unplanned episodes of withdrawal. Some of these episodes occur outside of clinical settings so the person remains at risk of repeated episodes of complicated withdrawal. Recurrent periods of thiamine deficiency cause cumulative brain damage (Crowe and El-Hadj, 2002; Price and others, 1988; Ciccia and Langlais, 2000). So, clinicians should give prophylactic thiamine routinely to people with alcohol dependence who continue to drink, whenever they present to medical services (Thomson and others, 2012). See section 10.4.3 in chapter 10 on pharmacological interventions for guidance on prescribing and administering oral and parenteral (intramuscular) thiamine.
Broadly speaking, people with ARBD may present to health services in one of two ways:
- an acute presentation
- a more chronic presentation
An acute presentation is often as part of a hospital admission, where comorbid physical health issues (such as encephalopathy, delirium tremens or pancreatitis) will be the initial focus for treatment. This is also often complicated by the presence of multiple comorbidities including features such as a head injury and vascular trauma.
A more chronic presentation is where there is a gradual cognitive decline in the community which may be recognised by the person, family members or as a result of routine cognitive screening in community services. Some of these people will be abstinent from alcohol but most will still be alcohol dependent.
Of course, the picture is rarely that simplistic and the 2 will often overlap.
20.7.1 An acute framework
Research (Wilson and others, 2012) has described a framework for understanding the natural history of ARBD in people who present with acute problems. This framework is split into 5 stages, which was developed from retrospective clinical studies, clinical consensus statements and studies on the rehabilitation of patients presenting with acquired, traumatic brain injury. The 5 stages are:
- physical stabilisation
- psychosocial assessment
- therapeutic rehabilitation
- adaptive rehabilitation
- social integration and relapse prevention
Not all people with ARBD present with acute problems. Those presenting to community services with more gradual cognitive decline may need to initially focus on becoming abstinent from alcohol (in the most appropriate setting) and then engage in interventions relevant to their stage of recovery. Although it may not be appropriate for them to move through the 5 stages above in sequence, clinicians can take relevant elements from the stages to form a comprehensive treatment plan for the person based on their presenting need. It is possible that some people regain near normal cognitive function in the earlier stages of the process. So, it is extremely important to maintain a flexible and dynamic care plan that can adapt to the changes in a person’s function.
20.7.2 Phase 1: physical stabilisation
Physical stabilisation is concerned with preventing or treating withdrawal and ensuring that any comorbid acute medical conditions are treated. Sections 10.3 and 10.4 in chapter 10 on pharmacological interventions provides guidance on medically assisted withdrawal and section 10.5 in chapter 10 provides guidance on prescribing for relapse prevention.
20.7.3 Phase 2: psychosocial assessment
If a person can maintain abstinence from alcohol following the treatment of acute conditions, their cognitive and functional abilities usually improve over the next 3 to 4 months. So, support to maintain abstinence is of vital importance, but clinicians may need to adapt standard treatment approaches to take into account any cognitive impairment (MacRae and Cox, 2003). Advice for adapting psychosocial interventions is provided later in this section.
There are a number of principles and interventions that should be considered during the psychosocial assessment phase. These include:
- developing a therapeutic relationship and offering psychosocial support (MacRae and Cox, 2003; North and others, 2010; Wilson and others, 2012)
- promoting ‘normalisation’, such as establishing daily routines and recommending appropriate nutritional intake (planning and providing a timetable and structure may help)
- arranging help for practical needs, such as debt and welfare benefits and introducing them to a support worker or advocate
- involving family and other carers where appropriate
- planning for orientation and memory support
- providing alcohol harm reduction information (see chapter 8 for guidance on harm reduction)
At this point it may also be helpful to encourage people to start a personal journal. This may be a useful thing for them to do because it can:
- help with recent memories (could include photographs of recent events)
- introduce the concept of routine by providing a memory of recent events
- build a relationship between the person and keyworker
- provide an introduction to planning
20.7.4 Phase 3: therapeutic rehabilitation
A therapeutic rehabilitation programme aims to gradually improve a person’s skills for daily living as their cognition improves. There are a number of targets for interventions in this phase, which include the following.
Developing autonomy
You can help a person to develop autonomy by helping them to become more independent and improve their ability to self-manage where cognitive or functional deficits remain (Wilson and others, 2021).
Promoting functional recovery
You can promote functional recovery through maintaining a journal, planning activities and learning skills. Occupational therapists or other healthcare staff with expertise in neurorehabilitation can support people in re-learning everyday tasks and establishing routines that are important for regaining skills, confidence and orientation.
Supporting memory
You can support a person’s memory with strategies such as:
- using a journal to provide an opportunity for regular review of progress and to help the person remember recent and past events
- using a whiteboard to keep a continuous and easy-to-see record of the date, day and location of recent events
- keeping lists of things to do and remember
- using visual signs and memory aids
Managing executive dysfunction
Some people with ARBD have problems with executive function. Executive function describes a set of skills needed to:
- plan ahead and meet goals
- display self-control
- follow multiple-step directions even when interrupted
People with problems with executive function are likely to need a lot of help to use strategies. For example, staff may need to prompt and help people to make use of their journal. It is helpful to give people simple repeated instructions about carrying out tasks and avoid giving them unnecessary information.
Managing apathy and motivation
For some people, ARBD can result in apathy and problems with motivation. Staff need to take a persistent and consistent approach to encouraging people to carry out tasks and participate in activities. They need to explore approaches and activities that can support the person’s motivation. Establishing a motivating environment is important. For example, routines can be helpful and these should be obvious in the setting, such as through information on a noticeboard.
Managing alcohol use
You can help the person manage alcohol by using adapted psychosocial interventions and considering the appropriateness of relapse prevention medication. As with all medication, the clinician needs to obtain the person’s informed consent before they start the medication, and they will need to get their consent on a regular basis. Cognitive impairment can affect a person’s capacity to consent to medication and their ability to observe a regular dosing schedule. So, clinicians may need to carry out a mental capacity assessment to assess the person’s capacity to consent to that treatment.
Developing relationships
Developing relationships is important to support the person to build relationships with their keyworkers and to improve relationships with people who care about them, such as family and carers. This will strengthen their informal community support structure for times when professionals are not so closely involved.
20.7.5 Phase 4: adaptive rehabilitation
Adaptive rehabilitation is a transitional phase that takes place when clinicians consider that the person has reached their optimal level of cognitive and behavioural improvement. It is important to reassess their functional ability and the amount of support they will need, encouraging autonomy but ensuring safety.
A full assessment of activities of daily living should take place. This should include a review of the person’s environment and care package to see if anything needs to be adapted. Phase 4 often involves transferring care from a setting with a high level of support to a less dependent environment or reducing carer support.
During this phase, the person is at increased risk of returning to problem alcohol use, particularly if they are returning to their previous environment (where they may be exposed to previous triggers for drinking). So, any transfers of care must occur in a managed, planned way, involving all relevant health and social care agencies as well as the person and their family or carers. An identified person should co-ordinate the care plan and ensure that regular reviews are undertaken.
20.7.6 Phase 5: social integration and relapse prevention
The main therapeutic principles of social integration and relapse prevention are to maintain abstinence from alcohol and an optimum level of independence and quality of life moving forward.
Staff can reduce and manage a person’s exposure to drinking triggers by supporting them to engage in non-drinking social networks, including peer support networks and finding new, more suitable accommodation. Ongoing training and education to develop employment and life skills as well as support to manage their own finances may be appropriate. It is also important to support people to make healthy lifestyle choices, such as eating healthy diets and engaging in positive activities and hobbies.
20.7.7 Adapting psychosocial interventions
Standard psychosocial interventions rely on a degree of cognitive flexibility and abstract thinking which may be impaired in people with ARBD. This does not exclude their use for people with ARBD but means that standard approaches need to be adapted and tailored to the needs of the person. Adaptations could include:
- proactively engaging people with cognitive dysfunction, with more frequent and assertive attempts to make contact
- limiting the number of subjects discussed at each appointment to allow for reduced levels of concentration and difficulties in swapping from topic to topic
- providing rewards for appropriate behaviour, which may include psychological rewards such as praise, or social rewards such as attending enjoyable social activities - but all rewards should be tailored to the person and may help recall by positively reinforcing the behaviour
- increasing the length of appointments
- adapting sessions to accommodate problems in remembering new information, for example having the person repeat information as soon as it is given
- offering information in various ways, including verbal, written and using diagrams
- using memory cues and reminders such as diaries, electronic reminders to complete tasks, notices, colour coding to identify the person’s room and having cupboards with transparent doors
- having simple rules to apply when making decisions and dealing with problems, for example to ask a support worker or a family member if they are not sure what action they should be taking
- keeping relapse prevention strategies very simple
You can find more information on psychosocial interventions in chapter 5 on psychosocial interventions. Section 5.5 on structured support can be adapted for people with ARBD.
20.7.8 The location for cognitive rehabilitation for people with ARBD
Dependent on social needs, people with ARBD may access rehabilitation interventions in a variety of settings and it is important for their recovery that they receive an appropriate level of support. Support settings and interventions should reduce risk while enhancing autonomy and independence.
People living in residential environments on the basis of care needs may receive psychosocial interventions as part of an ARBD rehabilitation package. However, this is not the same as engaging in a dedicated ARBD residential rehabilitation programme. There are a small number of dedicated ARBD residential programmes in the UK. A recent evaluation of a 12-week dedicated ARBD residential programme in Scotland showed significant reductions in attendances at emergency departments and the use of inpatient beds, as well as significant improvements in cognitive function (Smith and Willenborg, 2024).
Receiving cognitive rehabilitation in a residential setting should usually have advantages over similar programmes in the community, as the person with ARBD would be shielded from their specific triggers for drinking within their own environment. To date, there is no evidence-base to confirm this. However, the alcohol guidelines development group recommends that access to residential and community forms of cognitive rehabilitation should be available, so that people with ARBD can be placed in the most appropriate treatment setting based on their individual needs.
It is important to provide long-term psychosocial support for people with residual cognitive deficits from ARBD who seem to have reached their optimal level of cognitive and behavioural improvement. Multi-agency long-term support that addresses the person’s physical health, mental health, day-to-day functioning and social care needs, including help to establish a personalised support network, can reduce the likelihood of someone returning to harmful alcohol use (Wilson and others, 2012).
Dedicated ARBD services are rare in the UK, so people with ARBD will often have their health and social care provided by a variety of different services. People with ARBD often have additional mental health conditions, so it is important that mental health services are part of the team supporting the person where relevant. It is vital that the person has a single, comprehensive care plan that all services work to. The person should also have an identified lead professional who has expertise in managing ARBD, or where this is not possible, expertise in managing cognitive impairment.
Part of the role of the lead professional is to update the different services involved in a person’s care about the care plan. As well as sharing this information with the person and their family or carers, lead professionals need to communicate with:
- alcohol treatment services
- community mental health teams (both adult and older adult)
- adult social care
- specialist services including occupational therapy
- primary care
- secondary care services (for example hepatology)
- housing organisations
- independent mental capacity advocates
- other advocates supporting the person on issues such as attending appointments
- peer support
Appropriate accommodation is often the most important factor in maintaining a person’s abstinence. It is vital that various levels of support are available to match the person’s needs. This can range from nursing home care to independent living with minimal support.
Some people may return to harmful alcohol use. If clinicians think that the person has the capacity to make decisions about drinking, the clinicians should normally encourage them to stop or limit their drinking and refer them to alcohol treatment services, if they consent.
If they do not have the capacity to make decisions about drinking, then following a ‘best interests decision’, they should usually be managed in services that are competent in managing people with severe cognitive impairment.
20.9.1 Legislation and statutory guidance
ARBD can affect a person’s memory and reasoning, which are important factors when assessing their mental capacity to make a specific decision. The assessment of capacity is governed by the relevant legal framework, such as that contained in sections 1 to 3 of the Mental Capacity Act 2005.
You can find information on the legislation and statutory guidance on mental capacity in annex 1. There are some differences in legislation relating to mental health, mental capacity, and safeguarding across the different nations of the UK.
Impairment or disturbance
To determine whether a person lacks capacity to make the decision in question, you must be able to show that the inability to make the decision in question has been directly caused by an impairment or disturbance in the functioning of the mind or brain. This could include the symptoms of alcohol use, and conditions associated with alcohol use. While a formal diagnosis may help to establish if the person has an impairment or disturbance, a formal diagnosis is not necessary for the purposes of the Mental Capacity Act.
Best interests
Once it has been established that the person lacks capacity to make the decision in question, any decision or act carried out on their behalf must be in that person’s best interests. Section 4 of the Mental Capacity Act 2005 sets out a checklist of factors that decision makers must work through in deciding what is in a person’s best interests. In particular, it sets out that decision makers should:
- consider the person’s past and present wishes and feelings
- consider the person’s beliefs and values that would influence the decision if the person had capacity, and any other factors they would have considered
- consult the views of other people, including friends and family members
Advocacy
You should also consider whether the person would benefit from support and representation from an independent advocate.
The Mental Capacity Act places a duty on the local authority or the NHS to appoint an independent mental capacity advocate whenever a decision is required about serious medical treatment or long-term change of accommodation. They need to do this where a person lacks the capacity to make the decision in question and there is no one appropriate to consult about the person’s best interests, other than someone engaged in providing care for them in a professional or paid context.
There are also duties on local authorities to provide independent advocacy when undertaking certain functions under the Care Act 2014.
Deprivation of liberty
In some cases, it may be necessary and proportionate to put in place care and treatment arrangements that amount to a ‘deprivation of liberty’ under article 5 of the European Convention on Human Rights. In these cases, proper legal authorisation should be obtained before the deprivation of liberty is implemented. Depending on the circumstances, this authorisation can be provided under the Mental Health Act 1983 or the Mental Capacity Act.
In the Mental Capacity Act, the deprivation of liberty safeguards can be used to authorise the deprivation of liberty of an adult lacking the relevant capacity in a hospital or care home. A court or protection order can authorise deprivation of liberty in other settings and for 16 and 17 year olds.
20.9.2 Potential effects of memory deficits on capacity to make a decision
When assessing a person’s capacity to make the decision in question, the assessor must follow the relevant legal framework. In doing so, the following practice considerations may be relevant.
Short-term memory
Short-term memory deficits are common among people with ARBD. Short-term memory involves the ability to register, retain and recall new information. During a conversation there may not be any obvious signs of short-term memory deficits. The person may be able follow a conversation and hold information long enough to weigh it up and make a decision, but might forget the content of the conversation (and the decision made) a few hours later.
Long-term memory
Long-term memory problems are common among people with Wernicke-Korsakoff syndrome. People with ARBD may have experienced up to 20 years of retrospective memory loss and may not have any significant understanding of their harmful drinking and that it has contributed to their current situation.
When assessing a person’s capacity to make a specific decision, practitioners should not assume that they remember their own history, or are aware of:
- the amount they drink
- how long they have been drinking at this level
- the social and financial consequences of drinking
People often lose long-term memories, so practitioners must be aware the person will make decisions when they are not fully aware of what they have been through.
Combination of short-term and long-term memory problems
A person with Wernicke-Korsakoff syndrome may have a limited short-term memory of 2 to 30 minutes and long-term memory loss of some years. The person’s current thoughts might relate only to the last few minutes or hours. Their most recent remembered events might have occurred years ago, possibly before they had alcohol problems. So, they might not be able to retain the relevant information long enough to use it to make a decision.
Although the Mental Capacity Act says that people who can retain information for a short while must not automatically be assumed to lack the relevant capacity, it depends on what is necessary for the decision in question. It can be important to provide support (such as voice notes and visual prompts) to help the person retain the information.
False memories
False memories (or confabulations) often occur in people with memory deficits who will commonly appear confused when presenting at services. People with short-term memory loss can unconsciously fill gaps in their memory with false memories to explain their current situation. A person who has memory loss and is creating false memories is vulnerable to suggestion from others. You should check anything the person says with information from a suitable professional, carer or relative about their cognitive and functional abilities.
20.9.3 Reasoning difficulties and potential effects on mental capacity
Reasoning problems are common in people with ARBD. Signs of reasoning difficulties may not be obvious and can often be missed when examining people for cognitive impairment. In people with more advanced ARBD these signs can include:
- problems in social awareness
- not understanding the consequences of actions
- not being able to estimate risk
People with ARBD can experience difficulties in processing and understanding information they are given. Some people with ARBD lack motivation and have problems in changing their behaviour and routine. They may find it difficult to resist situational cues, such as triggers to drinking in stressful situations. In structured settings, such as when being assessed by a practitioner, a person may contain and regulate their behaviour. But in other, less structured circumstances, their impulsive and disinhibited behaviour may become more obvious.
20.9.4 Practical suggestions for assessing the mental capacity of a person with ARBD to make a decision
Standardised tools
Clinicians should establish evidence of cognitive impairment using a standardised tool such as ACE III. You should be aware that ACE III cut off scores provided with the tool have not been validated in people with ARBD. A comprehensive multidisciplinary assessment is required to confirm ARBD.
The relevant decision in question when assessing capacity
It is very important that you correctly identify what is the specific decision that needs to be made (this is known as ‘the matter’ under the Mental Capacity Act). For example, you may need to assess the person’s capacity to make decisions about care in circumstances where you are proposing to change their care plan. Or you may need to assess capacity to make residence decisions if you are proposing a change in accommodation.
You will also need to think about the information relevant to the decision, which may include the impact of the person’s drinking on their care or residence arrangements.
Considerations for assessing capacity to make decisions about alcohol consumption
In some cases, you may need to assess a person’s capacity to make decisions about their alcohol consumption. For example, this might be because you are proposing a care plan to restrict alcohol consumption and there is a good reason to believe the person may lack capacity to consent. The following considerations and questions might also be useful in undertaking this assessment.
You must think about the relevant information for the decision that the person would need to be able to understand, retain, and use to make the decision. Normally this will include the:
- nature of the decision
- reason why the decision is needed
- likely effects of deciding one way or another or of making no decision at all
But there may be other relevant information, specific to the case, that will need to be added.
When assessing capacity to make decisions about alcohol consumption, you may need to ask the person if they:
- are aware of their alcohol consumption and associated risks
- are aware of other related problems they are potentially facing - for example, and depending on the facts of the case, fire risk, malnutrition, hospital admissions, financial or legal problems
- are aware of the degree and nature of any cognitive impairment
- know what will happen if they continue drinking
You should assess if the person can retain the relevant information for long enough to make the decision. In doing so you should also think about strategies to assist the person to retain the information, such as:
- reminding the person’s carers to reinforce the information afterwards
- checking the person has personalised written information they can refer to
‘Frontal lobe paradox’ describes where a person with frontal lobe impairment who shows difficulties with everyday tasks may still be able to explain quite clearly how to carry out these tasks. They may also perform well in tests of function carried out in clinical settings (George and Gilbert, 2018).
Even if they have no obvious frontal lobe damage, some people with ARBD may be able to describe how they would do things but not able to carry these actions out. This difference would have potential implications for clinicians, as people with frontal lobe impairment may perform well in clinic-based tasks such as cognitive testing due to the well-defined rules and requirements of the task. But the same people will struggle with poorly structured tasks in less ordered environments in everyday life (Burgess and others, 2009; Jackson and others, 2014).
Frontal lobe impairment is often an early sign of ARBD and may go unrecognised by both patients and professionals. So, the frontal lobe paradox may be a factor in the difference between formal assessments in clinical settings and behaviour in the community for people with ARBD. However, there is a current lack of research evidence to support this. For this reason, you must take care when making changes to assessment methodology based primarily on opinions, as opposed to an empirical research base (Newstead and others, 2022).
For now, it is important to highlight that the information obtained from structured assessments (such as the ACE-III) in people with ARBD must be supplemented with:
- general assessments
- collateral reports from clinicians and significant others
- general observation
The danger of basing functional evaluations on structured interviews or assessments alone is that effects such as the frontal lobe paradox may not be fully evident.
When assessing a person’s capacity to make a decision, in respect of someone with executive functioning difficulties, it will be particularly important to consider their ability to use and weigh up the relevant information. People with executive functioning difficulties may appear to understand the relevant information during the assessment but may be unable to put into effect their stated intentions. So, it is also useful in this context to get evidence from others, such as friends and family, to supplement information from the interview. A one-off assessment may be insufficient.
Burgess PW, Alderman N, Volle E, Benoit RG and Gilbert SJ. Mesulam’s frontal lobe mystery re-examined. Restorative Neurology and Neuroscience 2009: volume 27, issue 5, pages 493 to 506 (registration and subscription required for full article).
Ciccia R and Langlais J. An examination of the synergistic interaction of ethanol and thiamine deficiency in the development of neurological signs and long‐term cognitive and memory impairments. Alcohol Clinical and Experimental Research 2000: volume 24, issue 5, pages 622 to 634.
Crowe F and El Hadj D. Phenytoin ameliorates the memory deficit induced in the young chick by ethanol toxicity in association with thiamine deficiency. Pharmacology Biochemistry and Behavior 2002: volume 71, issue 1 to 2, pages 215 to 221 (registration and subscription required for full article).
Davies NH, Lewis J, John B, Quelch D and Roderique-Davies G. Cognitive impairment among alcohol service users in South Wales: an exploratory examination of typologies of behaviour, impairment, and service attendance. Frontiers in Psychiatry 2024: volume 15.
George MS and Gilbert S. Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist 2018: volume 5, pages 59 to 66.
Emmerson C and Smith J. Evidence-based profile of alcohol related brain damage in Wales (PDF, 540KB). Public Health Wales, 2015 (registration and subscription required for full article).
Heirene R, John B and Roderique-Davies G. Identification and evaluation of neuropsychological tools used in the assessment of alcohol related cognitive impairment: a systematic review. Frontiers in Psychology 2018: volume 9.
Jackson HF, Hague G, Daniels L, Aguilar R, Carr D and Kenyon W. Structure to self-structuring: infrastructures and processes in neurobehavioural rehabilitation. NeuroRehabilitation 2014: volume 34, issue 4, pages 681 to 694 (registration and subscription required for full article).
Loeber S, Duka T, Marquez H, Nakoviks H, Heinz A, Mann K and Florand H. Effects of repeated withdrawal from alcohol on recovery of cognitive impairment under the abstinence and rate of response. Alcohol and Alcoholism 2010: volume 45, issue 6, pages 541 to 547 (registration and subscription required for full article).
MacRae S and Cox S. Meeting the needs of people with alcohol related brain damage: a literature review on the existing and recommended service provision and models of care. University of Stirling, 2003.
Manchester D, Priestley N and Jackson H. The assessment of executive functions: coming out of the office. Brain Injury 2004: volume 18, issue 11, pages 1,067 to 1,081 (registration and subscription required for full article).
Newstead S, Lewis J, Roderique-Davies G, Heirene R and John B. The paradox of the frontal lobe paradox: a scoping review. Frontiers in Psychiatry 2022: volume 13.
North L, Gillard-Owen L, Bannigan D and Robinson C. The development of a multidisciplinary programme for the treatment of alcohol related brain injury. Advances in Dual Diagnosis 2010: volume 3, issue 2, pages 5 to 12 (registration and subscription required for full article).
Oslin W and Cary S. Alcohol related dementia: validation of diagnostic criteria. The American Journal of Geriatric Psychiatry 2003: volume 11, issue 4, pages 441 to 447 (registration and subscription required for full article).
Price J, Mitchell S, Wiltshire B, Graham J and Williams G. A follow-up study of patients with alcohol related brain damage in the community. Australian Drug and Alcohol Review 1988: volume 7, issue 1, pages 83 to 87.
Smith S and Willenborg R. Meeting the needs: description and evaluation of an alcohol related brain damage (ARBD) residential rehabilitation service. Alcoholism Treatment Quarterly 2024: volume 43, issue 1, pages 27 to 39 (registration and subscription required for full article).
Thomson A, Guerrini I and Marshall EJ. Wernicke’s encephalopathy: role of thiamine (PDF, 1.5MB). Nutrition Issues in Gastroenterology 2009: series 75.
Thomson A, Guerrini I and Marshall EJ. The evolution and treatment of Korsakoff’s syndrome: out of sight, out of mind?. Neuropsychology Review 2012: volume 22, pages 81 to 92 (registration and subscription required for full article).
Wagner Glenn S, Parsons OA, Sinha R and Stevens L. The effects of repeated withdrawals from alcohol on the memory of male and female alcoholics. Alcohol and Alcoholism 1998: volume 23, issue 5, pages 337 to 342 (registration and subscription required for full article).
Wilson K. Alcohol related brain damage: a 21st-century management conundrum. British Journal of Psychiatry 2011: volume 199, issue 3, pages 176 to 177.
Wilson K, Halsey A, Macpherson H, Billington J, Hill S, Johnson G, Raju K and Abbott P. The psychosocial rehabilitation of patients with alcohol related brain damage in the community. Alcohol and Alcoholism 2012: volume 47, issue 3, pages 304 to 311 (registration and subscription required for full article).