Alcohol-related brain damage (including Korsakoff's syndrome)

9. Treatment and support

Unlike Alzheimer's disease or vascular dementia, ARBD is not certain to worsen over time. There is a good chance of stabilisation or improvement if the person is given high doses of thiamine, remains free from alcohol and adopts a healthy diet with vitamin supplements. Brain scans show that, with abstinence, some of the damage caused by excessive drinking can be reversed. However, if the person continues to drink and eats poorly, ARBD is likely to continue to progress.

Treatment and support of a person with ARBD is given in two phases: the initial stabilisation phase and longer term rehabilitative care.

Initial stabilisation

During the initial phase of treatment, which usually lasts up to several weeks, the aim is to withdraw alcohol and stabilise the person's medical condition. Most patients with ARBD will need to stay in hospital for this phase.

Withdrawal of alcohol usually causes the person to have delirium (disorientation which varies over time) as well as intense sweating. They will also often have behavioural problems such as agitation and hallucinations. Treatment will include sedation, replacement of lost fluids and salts, and high doses of thiamine by injection.

Unfortunately, many people with ARBD have a lengthy wait in hospital before gaining access to specialist care. Depending on how serious the ARBD, a person could be discharged to residential care, sheltered accommodation or their usual home with support in the community.

After initial stabilisation, a person with ARBD will need ongoing support from two different kinds of services. Professionals in these services should work closely together to ensure the best care for the person.

Alcohol treatment services

To stay alcohol-free the person will need support from alcohol treatment services (see 'Other useful organisations'), which also help people with alcohol problems who do not have ARBD. Special drugs will sometimes be prescribed which either reduce the craving for alcohol or make the person feel unwell (or vomit) if they do drink. They will also need to take thiamine tablets and eat well generally.

As well as medication, the person will need non-drug support to stay alcohol-free. This often includes counselling or a 'talking therapy' such as cognitive behavioural therapy focused on their drinking. Support here will also look at a person's social networks and encourage them to attend self-help groups. See 'Other useful organisations' for examples.

Some of the common symptoms of ARBD make it harder for a person with the condition to engage with an alcohol treatment programme. This can include denial, lack of insight and impulsivity. Staying alcohol-free is also more challenging if the person has a complex social setting (eg homelessness, isolated from family due to alcohol misuse). Other medical problems such as drug misuse, poor physical health or depression can also add to the challenge. Addressing these broader aspects is important in helping the person stay alcohol-free.

Rehabilitation

As well as staying alcohol-free, a person with ARBD will also need rehabilitation to give them the best chance of returning to independent daily living. Rehabilitation is a specialised kind of support that is matched to the person's needs and works towards goals which the person agrees with the professional. It could include practising repetitive strategies to help improve memory, and learning to use memory aids or other supportive technology.

Rehabilitation may come from a dementia service, community mental health team or rehabilitation service for people with acquired brain injury (for example following an accident or stroke). What is available and offered locally - if anything - varies widely across the country.

Any improvement in the person's abilities is usually greatest in the first three months of abstinence but can continue for two to three years. It has been estimated that about a quarter of those affected by ARBD make a very good recovery. About half make a partial recovery and need support to manage their lives, but may still be able to live in their own homes or in sheltered housing. A further quarter make no recovery and generally require long-term residential care.

Other support for someone with ARBD will depend on their individual needs and may be similar to that available for a person with dementia. However, a person with ARBD is usually younger and physically more active than most people with dementia. They may therefore be better suited to services designed for people with young-onset dementia (where these are available) rather than to general dementia day care or residential care. These are generally intended mainly for older people.

It is vital that a professional with experience of supporting people with ARBD is involved in the person's care, regardless of where they live.

Supporting a person with ARBD can be challenging, because of the need for different kinds of support, together with widespread variation in what is available and no clear care 'pathway'. It can mean that the person and any family or friends supporting them experience great frustration in getting the right help. If appropriate support is not available, the person risks falling back into alcohol misuse and going through another cycle of hospitalisation and withdrawal. It is important for the person and anyone supporting them to remain positive and optimistic about the future.

Tips for supporting a person with ARBD

  • Ask professionals involved in the person's care how you can best help them. Professionals should see you as a key partner in their recovery.
  • The person needs to be supported to remain completely alcohol-free. By doing so they give themselves the best chance to recover.
  • Be positive and help the person to do things to retain and improve their skills. Do things with them, not for them.
  • Encourage the person to keep a diary. They will benefit from structure and a daily routine.
  • Break down complex tasks (eg cooking a meal) into smaller steps to make them easier to follow.
  • When talking to the person, remember that they may not keep information for very long afterwards. Give the person more time and encouragement when they are speaking. Be patient, use short phrases and recap at the end.
  • Place clues (eg pictures or labels) around the person's environment to help support them.
  • Encourage the person to eat a balanced diet. Many foods contain thiamine, either naturally or added. These include avocados, baked potatoes (skin on), leafy green vegetables, fish (eg mackerel and sardines) and wholegrains. The alcohol treatment service should also be able to make suggestions.
  • Help the person to look after themselves generally, such as getting enough sleep.
  • Support the person to attend a self-help group. If you are a family member, consider joining one too (see 'Other useful organisations').