Alcohol-related brain damage - the road to recovery

Alcohol related brain damage (ARBD) is a relatively new term that describes a range of brain conditions linked to long-term heavy drinking. Quite often the person who is drinking will not be aware of any problems with their mental functions, but friends and family members may notice changes. Symptoms may differ greatly but are likely to include confusion, memory loss and difficulty in understanding and learning new information. The person with ARBD may also show different personality traits – finding it difficult to control impulses, for example, or behaving in ways that would previously have been out of character.

There are a number of different types of ARBD and they show themselves in different ways:

• Alcohol-related dementia: The symptoms of this are similar to Alzheimer’s Disease, such as forgetfulness and confusion
• Alcohol amnesic syndrome: This involves short-term memory loss, difficulty concentrating, and confabulation (filling gaps in memories with irrelevant or inaccurate information)
• Wernicke-Korsakoff’s Syndrome (WKS): One the most serious types of ARBD, this is made up of a brain swelling known as Wernicke’s Encephalopathy, and a severe confusion known as Korsakoff’s Psychosis
• Damage to the frontal lobe – the brain’s control centre – leading to problems controlling impulses, making decisions, setting goals, planning, problem-solving, assessing risk and prioritising activities. The front lobe is also where our personality and moral conscience sit, so someone who has suffered damage to this part of the brain may seem to have changed as a person and behave quite ‘out of character’
• Hepatic encephalopathy – this is a confused mental state that occurs when the liver can’t get rid of toxins in the blood and these then poison the brain

As a general rule, drinking more that 50 units of alcohol a week (for a man) or 35 units a week (for a woman) for more than 5 years is likely to cause changes in the brain that adversely affect memory or other cognitive (thinking) processes. 50 units is about 5 bottles of wine or 20 pints of lager in a week, and 35 units is just less than 3½ bottles of wine or about 14 pints of lager per week.

The recommended maximum alcohol use for adults (men or women) in the UK is 14 units per week, ideally spread over three or more days and with at least two alcohol-free days each week.

If the person you care for has not been diagnosed with ARBD, but you have noticed symptoms that you are worried about and which seem to fit the criteria, it’s best to speak to a healthcare professional, such as your own doctor, about getting an assessment.

The most commonly used test used for memory problems or other cognitive problems is the Mini Mental State Examination (MMSE), although there are others. Generally, tests like MMSE are used to help to diagnose dementia, and they are not specifically tests for ARBD. They measure capabilities with memory, attention and language, but sometimes they are not sensitive enough to diagnose ARBD, especially if they’re carried out by professionals who are unfamiliar with ARBD. So, other methods may be needed to make an accurate diagnosis. These may include taking a medical history, a drinking history, blood tests, physical examinations, brain scans, or other cognitive tests. Making sure whoever’s making the diagnosis is aware of your loved one’s drinking history is crucial.

One important part of an ARBD diagnosis is to determine whether the damage to the brain is long-term, or short-term. For this reason, although initial tests can be conducted, a full assessment should be undertaken after 3 months of abstinence from alcohol. It might therefore be necessary to make a preliminary diagnosis whilst the person is drinking, which may change once they have stabilised without alcohol.

A doctor or other healthcare professional will be able make a referral to a service for an alcohol detox. It is important that anyone who is drinking very heavily does not try to stop drinking on their own. Withdrawal from alcohol can be very dangerous but, with medical support a detox can be completed safely in about 7 to 10 days. Detox and abstinence is not always possible, but even when it’s not, it will be beneficial to your loved one to be in contact with alcohol treatment services and to work towards abstinence or at least reducing their drinking.

Long-term heavy drinking can bring on a range of health problems, especially when someone is not eating well either. There may be physical problems linked to ARBD, with balance and walking becoming more difficult as a result of numbness and tingling in the hands and feet due to nerve damage (peripheral neuropathy). Heavy alcohol use may also have caused damage to the pancreas, liver or other organs, and raised high blood pressure. In the case of damage to the pancreas, this can lead to diabetes.

There can also be related brain conditions alongside the main diagnosis of ARBD. These may include:

• Central pontine myelinolysis – which can cause problems with swallowing and speaking
• Cerebellar degeneration – leading to boor balance and shaking
• Marchiafava-Bignami Disease – a rare condition in which parts of the brain are poisoned by alcohol, resulting in depression and/or paranoia
• Stroke – heavy drinking increases blood pressure and the risk of a stroke (which is a loss of blood to part of the brain)
• Long-term heavy drinking can also increase the chances of developing dementias such as Alzheimer’s Disease, and vascular dementia (caused by reduced blood supply to the brain).
  

All of these factors can complicate the care for someone with ARBD, and you may wish to discuss with their doctor or other healthcare professional the various treatments needed and how they work together.

After a period of around 3 months of not drinking, you may notice that the ARBD symptoms of the person you are caring for have reduced. If this is the case, it suggests that the damage to the brain is likely to be short-term and if they remain abstinent, they are likely to recover many or all of their faculties. People with ARBD who don’t show any improvement after three months without alcohol are likely to have more permanent ARBD, but can still make improvements over time. There is a lot that can be done to support their recovery. Around a third of people treated for ARBD make some sort of recovery, and around a quarter make a full recovery. But please do be aware that this can take several years.

There are a number of factors¹ that give people with ARBD the best chance of recovery. In the next few pages, we’ll look at each of these in turn and give you some ideas for things you can do to help your loved one’s rehabilitation.

Healthcare professionals should support you and the person with ARBD by producing a care plan for their ongoing care. This document should be based on the clinical and other needs of the patient and should be developed with the input of all those concerned in their care, including you as their carer.

1. Abstinence from alcohol

Stopping drink is the most important thing a person with ARBD can do. It’s also one of the hardest. A person who’s been drinking heavily for a long time should not attempt to suddenly stop on their own – their body will have got so used to alcohol that, without it, they may suffers fits and shock. However, with medical assistance it is possible to come off alcohol without these dangerous withdrawal symptoms. This is what we often call a ‘medical detox’. People with ARBD can receive detox treatment at a local hospital or specialist detox centre, and it is available on the NHS.

When someone goes for detox, they will be admitted to a ward or unit and allocated a nurse who will co-ordinate their care. They will then be assessed, and given medication that will limit withdrawal symptoms. The medication will be reduced over the following 7 to 10 days and the patient will be monitored throughout. Alongside this medication, it is usual for patients to receive high-dose injections or a drip of Vitamin B1 (thiamine). This is often referred to by its brand name Pabrinex. They may also receive other B vitamins and Vitamin C in this way.

They may also receive other medications or supplements, depending on their medical needs. Once the detoxification is completed, the patient is usually allowed home, unless their ARBD is so severe that they need to be admitted to residential care. They may be prescribed further medication to help them to avoid drinking in future, such as acamprosate (Campral), naltrexone or disulfiram (Antabuse).

After many years of heavy drinking, it can be hard for someone to imagine life without alcohol. People with ARBD often don’t have much insight into their condition and are not good at weighing up the risks of continuing to drink. They may forget that they are trying not to drink, so you can help by reducing the drinking cues in their environment. You could:

• Ensure that there is no alcohol in the house, and not drink alcohol when you’re with them
• Distract them with other activities when they mention wanting a drink
• Encourage them to drink water, tea or other non-alcoholic beverages
• Remind them of why it’s important that they don’t drink any alcohol.

Frequently, a person with ARBD will be detoxed as a medical emergency because continuing to drink is stopping other urgent medical treatment and, once the crisis is over they may wish to return to drinking. Sometimes, someone with ARBD does not wish to stop drinking at all. This can be very distressing for you as their carer. However, if they understand the implications of continuing to drink and make a considered decision to do so, they have the right to continue to drink.

You may be angry or upset by this decision, and it is natural to be puzzled by such a choice, but it will not help to try to coerce or force the person to change. Abstinence is more likely to be successful if the individual feels that they have control over the process, but it is useful for you to talk to the person you care for about their decision not to stop drinking. They may have fears about detox or withdrawal or fears about life without alcohol. Talking things through may help them to come to terms with the need to make changes. It can also help you to understand why they’ve made that decision. They may consent to engage with alcohol treatment services with a view to reducing their alcohol consumption, or they may change their
minds at a later date and decide to try and stop drinking.

There are also things that you can do to help reduce the impact of the alcohol if they do continue to drink. In the next few sections you’ll find information about nutrition and creating an appropriate environment for someone with ARBD. The tips in these sections will help, whether the person is drinking or not.

2. Good nutrition

People who drink very heavily are often malnourished. There are a number of reasons this can happen:

• They are getting their energy from alcohol rather than food, and so are simply not eating enough
• Vomiting is stopping them from holding onto food long enough to get the nutrients from it
• The alcohol is preventing their body absorbing nutrients and preventing their liver from storing them
• Their stomach is inflamed by gastritis, again making it hard to absorb nutrients

Quite often, when heavy drinkers stop drinking, their appetite returns and they are much more amenable to eating a healthy diet than when they were still actively drinking.

A good diet can improve mood, memory, sleep patterns and energy levels. So it’s important that people with ARBD are given every opportunity to eat well. Vitamins such as Vitamin B1 (thiamine) are important for a healthy brain. Your doctor should have prescribed Vitamin B1 (thiamine) tablets and/or injections to supplement a healthy diet, help prevent any further damage to the brain and aid recovery. Other nutritional supplements may also be prescribed.

A balanced diet will include lots of fruit and vegetables, starchy foods (carbohydrates), moderate amounts of protein, milk and dairy foods and only small amounts of fats, salt and sugar. The ‘eat well plate’ below shows the balance of foods that makes up a healthy diet.

You can help the person you’re caring for to eat well by:

• Talk to them about what they would like to change about their diet
• Put together a meal plan with them, based on things they like to eat
• Develop a mealtime routine to help them to learn when and where it’s appropriate to eat
• Encourage them to get as involved as they can in the preparation and cooking of meals
• Ensure that mealtimes happen in a quiet room with few distractions
• Encourage good oral hygiene (teeth cleaning) and ensure regular dental check-ups, as a poor diet and heavy drinking may have resulted in damaged teeth or gums or difficulties in chewing or swallowing food
• Help them to keep a food diary so they can see how their appetite has changed and grown over time (this is also a good reminder if people can’t remember what they’ve had to eat
• Their GP may be able to make a referral to a dietician, who can give more advice on eating well

Remember that change can take time. At first, your loved one may only be able to manage one meal or a couple of snacks a day but, with perseverance, they may start to eat more and a wider range of food.

3. A calm, stable environment

You may need to make some adaptations to your home to create a suitable home environment for someone with ARBD. It will help to minimise possible distractions – radios, televisions, people talking nearby can all interfere with the ability to hear, understand and remember information. In particular, when you’re giving instructions, make sure that you have their attention, by maintaining eye contact and sitting or standing close to them. Try to speak slowly and calmly and be prepared to repeat things, perhaps several times. You may want to use pictures or written instructions too.

Introduce new activities slowly. It can be important as someone makes progress that they are involved in activities that will stretch their abilities, but these need to be introduced gradually. For example if the aim is a trip to the shop to buy bread and milk, there may be a few weeks of just taking a daily short walk up the road towards the shop first, then several trips going to the shop and back, going in and finding the produce a few times and finally conducting the whole transaction. Remember, some people with ARBD will find it difficult to work out how to pay for things, whilst others will still retain sharp mental arithmetic skills, but may have difficulty interacting with a shop assistant. Each person is different so you will both have to learn what works as you go along.

There are also changes that you can make to the layout and furnishings that will help:

Lighting:

Good lighting is essential as a person with ARBD may have impaired eyesight (nystagmus or blurred vision):

• It can be helpful to leave a landing or bathroom light on at night so they can make their way to the toilet more easily
• Good lighting in the kitchen (e.g. under higher kitchen cabinets) will help them to see for food preparation
• In living areas an overhead light will be more effective than lamps which give pools of light and dark
• Where there is a change of lighting intensity, such as hallways, it can take the eyes a while to adjust, so these spaces need to stay clutter free.

Furniture and furnishings:

• Try not to change too many of these at once. It can be disorientating for someone who is trying to make sense of what is there already if they have to get used to a whole new layout
• Try to place seating so that it is easy to get to without navigating other large items such as tables
• If possible, kitchen and bathroom cupboards units should have handles
• Taps, too, are easier to use if they have levers, especially for people who have weak or shaky hands
• Provide grab rails or stair rails where possible
  

Noise:

• Everyday noises such as vacuum cleaners, washing machines, televisions and radios can be distracting but, of course, they need to be used
• Keeping to regular times for vacuuming and washing can help, but this is not always practical
• Some people with ARBD enjoy listening to music through headphones – it will drown out outside noises and can help them focus on one thing at a time. Do check regularly that the volume is not turned up too loud, though.

Line of sight:

• Ideally, things that are used regularly should be in the person’s line of sight to make them easier to find. It may seem strange but it also helps if things look like what they are. For example, novelty biscuit tins in the shape of other objects, rather than being plain with ‘biscuits’ written on the side can be confusingly unfamiliar.

There are some great tips on household layout and design in 10 Helpful hints for dementia design at home from the Dementia Services Development Centre at Stirling University.²

4. Structured daily routines

Providing people with ARBD with a structure and routine to their lives will help to make them feel more secure. Structure will help them learn what to do next, and constant repetitive routine helps embed new learning. Alongside this, it is useful to have a timetable to show what happens each day. Try to avoid making this too complicated, though – no need for colour-coding or reams of information about every activity. Try the following:

• Mealtimes at the same time and same place in the house each day
• Tuning in to a favourite television or radio programme each day or week
• Waking up and bedtime at the same time every day
• Using the same route on trips out of the house
• Always using the same phrases to announce or describe activities
• Repeating actions or words slowly until the person is able to take in the information

After a while, you should start to notice improvements and your loved one will be able to take on more advanced tasks. It’s important to strike a balance here between offering challenging activities that will stretch and develop their skills and moving too quickly, leading to a sense of failure. Try to encourage the person you care for to try new things but stop if they become distressed. Even if you don’t notice improvements in your loved one after a few months, their healthcare professional will be able to repeat tests that look at cognitive functions and you may find that their scores are improving.

5. Memory and orientation cues

Memory can be affected in different ways by ARBD. Most people with the condition will have some difficulty recalling things that have happened recently, what they’ve said or what has been said to them. They may also find it difficult to retain information that they’ve recently learned, and need to be told many times. Sometimes, they will be confused about what year it is, how old they are, and how time is passing.

In other cases, they will believe that they still live in a previous home or forget the names and uses of common objects. Again, this can be very distressing to witness and very frustrating to live with. Once you’ve got to grips with the kinds of things that the person you care for has difficulty with, you can start to plan ways to help them to improve their memory.

There are lots of ways you can help your loved one to start remembering things:

• Put together a ‘memory box’ with items, photos, and mementos from their past (all labelled) up to the present day, and go through it regularly with them to help them to remember different episodes from their life.
• Compile an album with pictures or photos of much loved places or people for them to look at, with labels bringing them up to date with events
• Label rooms and objects – ‘This is the bathroom’ or ‘Wardrobe: your clothes are in here’ for example. It’s useful to add a picture, too
• Create memory cards about everyday things such as ‘Breakfast is at 8 in the morning: make yourself some cornflakes and milk’ (add a picture).
• If possible, get a clock that tells the date/day as well as the time. You can keep a chart next to it that lists what happens at different times or days e.g. ‘You like to listen to the radio on Saturday mornings’ or ‘John comes to cook your lunch at 12.30’
• They may enjoy simple jigsaws or picture books – scenic views, fine art prints, classic cars, horses – whatever their interests are
• You can try different things at different times of the day to see when they’re most effective
• As time goes by you can try new things or go back to things that were less successful in the past
• It will help to use the same large clear font for all labels and put a picture next to the words.

The Brain Injury Workbook³ from the charity Headway offers a range of exercises that can help to improve memory.

6. Supporting and encouraging

All of the tips given above should help to create an environment where the person with ARBD can begin to recover. Even where rehabilitation is slow, it’s important not to give up hope and wherever possible to maximise the potential for further improvement. Here are a few more suggestions that may help progress:

• Break down tasks into small, manageable chunks. A single task may take several days to complete
• It’s important to offer lots of encouragement when the person does carry out activities, especially new ones, and to provide constant reminders that they are able to do these things
• Avoid clutter, both visual and auditory (noise)
• Allow for plenty of practice and repetition
• Leave out drink making facilities and snacks so that your loved one can help themselves if they feel able
• Have meals at a table and lay cutlery out, so this becomes routine
• Use practical aids that make life easier – electric tin openers, jar openers, levers on taps etc.
• Spend time reviewing the day’s activities. If you can take photographs of the person performing daily tasks, this will help to embed those activities in their memory
• Your loved one may be able to keep a journal, or you could write one for them that they can read to find out what they’ve been doing
• If you have a garden, they may enjoy sitting outside in fine weather or refreshing their gardening skills. They could take care of bird feeders have a small plot to work on
• You may wish to keep a record of the date when someone first accomplished something new, and when it became something they we able to do unaided or regularly. This will help you both to see the progress that is being made.
  

Please remember that these things can take time and it may be several months before your loved one is able to accomplish a fairly simple task like doing a load of washing or preparing a meal or making a trip to the shops unaided.

7. Dealing with challenging behaviour

Since ARBD covers such a wide range of conditions, no two people with will behave the same way. Some people will be calm and quiet. On the other hand, given that ARBD causes confusion and forgetfulness, people with the condition can be understandably frustrated, and even angry or aggressive. Damage to the frontal lobe of the brain can also lead to behaviour that is inappropriate, unkind or out of character. It’s helpful to remember that their behaviour is a symptom of their illness, rather than a deliberate attempt to be difficult, although it can feel like that sometimes. Below is a list of some (but by no means all) of the more difficult behaviours that your loved one might exhibit.

Disinhibition: People with frontal lobe damage can find it difficult to control their impulses. They may be uninhibited in their language and actions. For example, they may take their clothes off in public or comment inappropriately on someone’s appearance.

Sexualised behaviour: Another consequence of frontal lobe damage is that someone may misread sexual signals, propositioning strangers, assume sexual interest in others or make inappropriate sexual remarks.

Aggression: People with ARBD may have sudden mood swings or start shouting for no apparent reason. This can be a reaction to confusion and frustration. They may then find it difficult to calm down and will remain agitated for some time.

Apathy and reluctance to engage: Some people find it hard to rouse themselves from a state of inactivity. They will show no interest in people, events or activities and cannot be motivated to do things for themselves.

Gullibility: They may be easily-led. They have little insight into what is in their best interest and are susceptible to abuse or coercion. They may be too trusting and hand over money or possessions or invite strangers into the home.

Wandering: Memory problems may lead people to forget where they live and try to return to former addresses or pester people who no longer wish to have contact with them. These behaviours should improve over time, but in the meantime, here are some suggestions to help you deal with them:

• Don’t take the behaviour personally and try to ignore any critical comments
• Tell them at the time what is wrong with their behaviour and what you would like them to do instead
• Speak slowly in a calm voice and be prepared to repeat things if necessary
• Be firm and set boundaries that you can stick to
• Distract their attention towards acceptable behaviour – try to draw them into doing a different activity
• Give praise for appropriate behaviour
• Be prepared to listen. They may be asking for more attention, need more stimulus, or be confused about something in their environment
• Reassure them that you are there to help
• Avoid arguing or reacting to provocation
• Keep your posture open (avoid pointing fingers or crossing your arms)
• You can also try classic calming techniques – count to ten, take deep breaths and think of something that cheers you.
  

8. Getting help from specialist alcohol services

Alcohol services are available throughout the UK. Some can be accessed in GP surgeries, health clinics and hospitals, or they may have their own premises. Services are provided by the NHS and by local charities and are generally free of charge.

Ideally, your local alcohol service will be able to provide your loved one with support to abstain from alcohol. However, alcohol dependence is a chronically relapsing condition and people who have stopped drinking are not always able to stay off alcohol for good. It is still very important that people with ARBD actively work on their sobriety. This might be through attending Alcoholics Anonymous or SMART Recovery meetings, or it might mean engaging with your local alcohol treatment service for relapse prevention support.

Even if someone is not motivated to stop drinking, it is still worth encouraging them to work with an alcohol treatment service for a number of reasons:

• Attending a service or a support group regularly can help them develop a sense of routine, and can become a comforting and a familiar part of life
• They may be able to set goals around their drinking that do not involve abstinence but which will help them to cut down or make other changes to their drinking behaviour
• Making and maintaining contact with a service will mean that they have access to specialist professionals who can offer a range of support options when they need it, including help with benefits, housing, employment, training etc.
• Alcohol services can often also provide or signpost clients to alternative therapies that may benefit the patient such as herbal medicine, aromatherapy and massage, music and dance therapy, acupuncture, dietary supplements and other therapies
• Even if cognitive impairment is so advanced that your loved one is not able to benefit from alcohol treatment services, the service may still be able to help you as a carer to better understand what’s happening and what can be done.

Getting someone with ARBD to actually go to an alcohol treatment service is not always easy, and it may be possible for an alcohol practitioner to make home visits. It is worth finding out what’s available locally.

In some cases a person with ARBD won’t full understand their situation – in medical and legal terms they are said to be ‘lacking capacity’. This means that they are not able to understand, remember and communicate the information they’ve been given and so don’t have the mental capacity to make that decision for themselves. This does not mean that they will never be able to make decisions for themselves; nor that they are currently unable to make any decisions at all about their care; but it does mean that on some issues at this particular time, someone else can take a decision on their behalf, in their best interests. In many cases that person will be you, their carer, but when it comes to longer-term decisions such as the extent to which they can take care of themselves, where they live and how much support they need, an assessment will be carried out usually by a doctor or social worker, and they should consult you about the assessment process and the outcome.

If you disagree with the findings of a mental capacity test, you need to let the person who conducted the test know, and explain why you disagree. For example, if a mental capacity test is carried out over a short period of time, say half an hour, the person with ARBD may be able to understand and remember what is being said to them during the test; but an hour later they may have forgotten that the conversation ever took place and have no understanding of what they agreed to. Also sometimes, people with ARBD can be easily led into responding in a way that they think their interviewer would like them to; or they will ‘confabulate’ responses that seem plausible to the interviewer. Confabulation is a symptom of Wernicke-Korsakoff’s Syndrome in which someone makes up stories to fill the gaps in their memory. They are not deliberately lying and will believe that whatever they are saying is true.

The person conducting the test may agree to retest at a different time, or over a longer period. If not, you can request that the decision be reviewed by the organisation conducting the test.

If you do have to make decisions on behalf of someone with ARBD, there are specific legal arrangements for this. See our three legal fact sheets, which explain those arrangements:

• Advance decision-making
• Lasting Power of Attorney
• Use of the Mental Capacity Act 2005, including Deprivation of Liberty Safeguards (DOLS)

You might also wish to look at the UK Government’s Mental Capacity Act Code of Practice and/or the British Medical Association’s Mental Capacity Act Toolkit.

Any caring role is hard work, and people with ARBD can be particularly demanding and frustrating to care for. Alongside thinking about the needs of the person you are caring for, you need to consider the impact that their condition is having on you and other family members, and ensure that your own needs are being met. These needs might be:

Financial: You might be worrying about how you will care for someone with ARBD whilst going out to work, or about the extra costs of their care; you may want help to apply for benefits to meet some of those costs.

Emotional: It can take time to come to terms with a diagnosis and the impact that your caring role will have on your day-to-day life, and it may feel like a grieving process. The nature of alcohol problems often means that family relationships are strained or broken after many years of heavy drinking. You or others might feel angry, ashamed, embarrassed or let down by your loved one and these emotions may conflict with the compassion you also feel for their condition and your concern for their care. It can help to talk about these feelings with someone outside of your family or circle of friends, and you may benefit from talking things through with a counsellor, or from attending a carers’ support group.

Practical: You might have concerns about the person’s unpredictable behaviour and how you will cope with their needs, or how to support their rehabilitation.

Social: Maybe you’re concerned about the reaction of others. It is very common to feel stigmatised by or ashamed of an ARBD diagnosis, and you may worry that others will treat you or your loved one differently. Or, you may find that your caring role prevents you from taking part in social activities, which will impact on your own mental wellbeing.

Take some time to think about what you are going to do next and weigh up your options. Be realistic about your ability to care for your loved one. It’s normal to find your caring role overwhelming at times, and surveys have found that most carers don’t feel they receive enough support in their caring duties.⁴ If you are not able to continue your caring role you need to speak to your GP or other healthcare professional about what support is available to you or other care options for your loved one. Don’t think of this as any sort of failure. Your health, as well as that of your loved one is important and you may be able to take on a role that is more fulfilling for both of you as a ‘visitor’ rather than as a ‘carer’.

There are lots of resources available to help you to understand what your options are and to get support. The last section of this handbook will give you some useful contacts.

You may be eligible for financial support, such as Carer’s Allowance (https://www.gov.uk/carers-allowance) or other support.

You are entitled to a Carers’ Assessment to determine what you are entitled to.

You might also want to consider counselling or joining a support group. Again, there are more details at the end of this handbook.

Resources from Alcohol Change UK.

For more information on ARBD, read our fact sheets:

• ARBD – What is it?
• ARBD – Diagnosis and treatment
• ARBD – Signs and symptoms
• Alcohol and the brain

If you have to make decisions on behalf of someone with ARBD, our legal fact sheets explain the ways you can do that:

• Advance decision-making
• Lasting Power of Attorney
• Use of the Mental Capacity Act 2005, including Deprivation of Liberty Safeguards (DOLS)

For more detailed information on all aspects of ARBD, read our report: All in the mind – Meeting the challenge of alcohol-related brain damage

You can also find out more about alcohol treatment here.

Books

Here are a few books you might find useful. All of these are available to buy on online or your local library may have them or be able to get them for you.

The brain injury workbook: exercises for cognitive rehabilitation, Trevor Powell and Kit Malia, published by Speechmark.

Living beyond brain injury: resource handbook, Vicki Hall, published by Speechmark.

10 helpful hints for carers: practical solutions for carers living with people with dementia, June Andrews and Allan House, published by Stirling University, available from: www.dementiashop.co.uk

Thinking about drinking: towards a safer relationship with alcohol, Stuart Linke, published by Muswell Hill Press

National organisations

Alcoholics Anonymous

www.alcoholics-anonymous.org.uk

Alcoholics Anonymous (AA) have groups for people across the country who feel they are unable to control their drinking. AA’s work is based on the world-famous 12 Step programme

Al-Anon

www.al-anonuk.org.uk

Al-Anon is an organisation for the relatives and friends of people with a drink problem. Their local groups are safe and confidential spaces to share experiences and get support. Al-Anon also run Alateen for teenage relatives and friends of drinkers

Alzheimer’s Society

www.alzheimers.org.uk

This is a national charity supporting people with various forms of dementia, their carers, friends and relatives

Carers Trust

www.carers.org

Carers Trust supports carers through a network of 116 independent carers’ centres, 55 Crossroads Care schemes and 99 young carers services across the UK

Carers UK

www.carersuk.org

Carers UK give expert advice and support on many aspects of being a carer

Counselling Directory

www.counselling-directory.org.uk

You can use this to help to find a counsellor in your area if you feel you’d like to talk through your feelings and concerns

Depression Alliance

www.depressionalliance.org

The Depression Alliance is the leading national charity for people affected by depression. They provide a range of information and support services and work to reduce the stigma and isolation often associated by depression

Headway

www.headway.org.uk

This is the leading national brain injury charity, and offers practical and emotional support for families and carers. They can offer a carer’s assessment and are developing specialist services for people with ARBD and their families

Smart Recovery

www.smartrecovery.org.uk

SMART Recovery is a mutual support programme to help people manage their recovery from any type of addictive behaviour, including alcohol misuse. Like AA, SMART run local groups where you can share experiences and gain support confidentially. Some people who are not comfortable with the ‘spiritual’ aspect of AA, or who do not consider themselves an ‘alcoholic’, prefer SMART

Other websites and online resources

Here are just some of the places you can get more information on the internet.

The UK Government offers a range of information about Carer’s Allowance: https://www.gov.uk/carers-allowance

You can find out more about Carers’ Assessments from Carers UK: https://www.carersuk.org/

¹ Royal College of Psychiatrists (2013) Alcohol and brain damage in adults, with reference to high-risk groups
² Available to buy online from Stirling University: http://www.dementiashop.co.uk/products/
³ Available to buy online from the Headway shop: https://shop.headway.org.uk/
⁴ Alcohol Concern (2014) Take care: an Alcohol Concern Cymru project in partnership with Newlink Wales to support unpaid carers to avoid problems with alcohol