More about ARBD & Korsakoff Syndrome

Acute excess intake of alcohol can cause drunkenness (intoxication) or even death, and chronic or long-term abuse leads to potentially irreversible damage to virtually any level of the nervous system. However, how much an individual is affected by alcohol will depend upon their genes, how well nourished they are and other environmental factors, such as exposure to drugs or other toxins. Neurological complications of alcohol abuse may also result from nutritional deficiency, because alcoholics tend to eat poorly and may have depleted levels of thiamine or other vitamins important for nervous system function.
Wernicke-Korsakoff's syndrome (WKS) is caused by a deficiency of the B-vitamin thiamine, and can also be seen in people who don't drink alcohol but have some other cause of thiamine deficiency such as chronic vomiting. The disease is characterised by mental confusion, amnesia and impaired short-term memory. Individuals often appear apathetic and inattentive and some may experience agitation. WKS also inhibits a person's ability to learn new information or tasks. Other symptoms include marked confusion, delirium, disorientation, drowsiness and abnormalities of eye movement, including jerking of the eyes and double vision. Problems with balance can make walking difficult, and people may have trouble coordinating their leg movements, but usually not their arms.

If thiamine is given, and further complications are averted, Korsakoff's syndrome (sometimes called Korsakoff's psychosis) may develop in some patients. They may suffer from both retrograde (unable to remember events from the past) and anterograde (unable to learn new information) amnesia. Most patients seem to have very little insight into their memory dysfunction and can often confabulate (make up explanations for events they have forgotten).

Other effects of alcohol-related brain disease include cerebella degeneration, a slowly progressive condition affecting the anterior and superior cerebella vermis portions of the brain, causing wide-based gait, leg co-ordination and walking difficulties. Alcoholic myopathy, or muscle weakness, affects four times as many males as females. In its severest form, alcoholic myopathy is associated with the sudden onset of muscle pain, swelling, and weakness.

Alcohol-related brain damage (ARBD) is an illness that has been around, I suppose, as long as the population has been drinking alcohol: unrecognised, undiagnosed and definitely untreated. It has led in the past to many relatively young adults being left on long stay wards in the old asylums, or being placed in nursing homes for the elderly. They would live out the rest of their lives in environments that were inappropriate to their needs: living for a long time, but unhappy, bored and withdrawn.

The current problem is the complexity of the illness and the individuals' needs. The diversity of services that these clients may come under, and which service will accept them, has become a challenge for our unit.

At present we have excellent social workers and health service workers who are committed to the needs of this group, but no single service provider. With this client group perhaps multi-agency working may be the answer: their memory problems could be understood and cared for by the older adults team; the alcohol team could manage their alcohol problems; anxiety and depression come under the remit of a mental health team; the young physically disabled team and the physiotherapy department could best deal with the mobility problems; the acquired brain injury team would have the advice and expertise we require to understand the brain trauma.

The geography of where a person with ARBD is resident is becoming more relevant , and the need to develop services has become more apparent. These are areas in the UK that are seeing increased numbers of clients with ARBD admitted to hospital, and thus requiring specialised follow-up care. Increasing numbers of individuals are being noticed in older adult facilities. Generally, it is social workers who are reviewing care packages and looking for alternative settings to better serve their ARBD clients.

Each individual can have different problems and variable levels of damage to their brain. However, as long as someone with ARBD continues to drink alcohol, the damage will increase. If they stop drinking the damage will not get any worse and, in fact, there is a significant possibility of recovery. Carers, out of lack of knowledge, can sometimes think that the damage has already been done, so allow the drinking behaviour to continue.

The damage sustained can be on a continuum ranging from mild to very severe. Further brain damage can be avoided if the sufferer abstains from alcohol and maintains a healthy diet. Recovery outcome can be split into quarters:
25% make a complete recovery
25% make a significant recovery
25% make a slight recovery
25% make no recovery

Recovery is also dependent on rehabilitative care and a supportive environment to maintain the required abstinence from alcohol. We need to look at facilities available and the development of services to provide the ARBD client with appropriate care during the two-year window of opportunity they are said to have before they reach their optimum recovery.

How does ARBD affect people we work with?

People may lose the ability to plan and organise, become unable to see the consequences of their own behaviour, and do not remember recent events and occurrences. Their emotional reactions may include loss of self-esteem and self-confidence, leading to anxiety and depression. These effects may lead to an increase in alcohol use. If we are to learn how to help and deal with the problems of ARBD it is important for us to consider the effect the syndrome has on individual's feelings as well as on other areas of their lives.

Who can be affected by ARBD?

Anyone.
You would be forgiven for thinking that this condition is only the problem of the hardened alcoholic, with the stigma of alcoholism as a major issue in their care. The label would therefore conjure up the image of an out of work, incapable person. Indeed areas with high unemployment seem to have a greater prevalence of clients with ARBD. However, I have cared for accountants, nurses, policemen, bankers and many other professionals; it can hit all types of people and personalities. The only way to not develop this illness is to not drink alcohol to excess.

My care of clients with Korsakoff's syndrome began in 1997. Prior to this date I had come across the illness but only a couple of times, and fleetingly, in my nursing career. In 1997, I opened a small residential home for three in Llandudno called Bryn Derv One of my first clients was a lady with Korsakoff's syndrome and I have been hooked ever since.

My clients and the other sufferers of ARBD throughout the UK are, I feel, very much the lost people, like the lost mariner in the book "The Man who Mistook his Wife For a Hat" by Oliver Sacks: lost and forgotten. No one or, more importantly, no single service, wants to "own" them. This leaves them as vulnerable as they were before their diagnosis. The only difference is that they are not on the streets or living alone. Their exploiters are not the un-knowledgeable, but the professionals through lack of knowledge. Many times I have been told, "You're wasting your time," or "KS? No one improves with that."

James came into my care unable to complete any tasks for himself. He was disorientated, confused and incontinent. Over the next two years he became less confused, and able to complete his own personal care with only minimal prompts. He helped around the home and also assisted other residents. He improved in all cognitive areas. He was able to play a great game of chess, enjoy snooker (not pool) and helped the children to learn tasks like tables and how to fasten their shoelaces. He has infinite patience and became a valuable voluntary worker for a number of local groups. James showed me how a person who was not expected to show any recovery and was only with me "until he deteriorated to needing EMI nursing care," can improve. Although he did not fully recover, he still showed small but significant improvements. Now James has a superior quality of life that is much more fulfilling than being placed in long-term care.

The last time Bryn Derw had an empty bed, in 2001, we had 18 enquires for it. The word had spread about the improvements that can happen to this client group when given the appropriate care package. It was very difficult to have to refuse so many people and we had to carefully assess who would benefit the most from the specialised care we could provide. We realised that another unit was needed to provide care to more people in need of our services. Instrumental in the development of our new specialist unit was one client, who was unable to be accepted into Bryn Derw because he was non-weight bearing and the bedrooms were upstairs.

At assessment he presented as being-such a character and he offered us as a real challenge - thanks to a very persuasive social worker! We felt that a package of care could be provided for him with myself providing outreach work to him in another home, which could provide him with the day-to-day residential support. Bill was extremely fearful, confused and living in about the late seventies-early eighties; he confabulated to compensate for his poor short-term memory. Parts of his past appeared to involve violence and illegal behaviours and he spent most of his time in his room, frightened that someone was coming to get him. He seemed frightened of his own reflection and could not believe it was himself he was seeing: the man in the mirror was in his forties and he was only twenty-three.

As with all our clients, from admission to hospital and until the present day, he has remained alcohol free. Bill calls himself the "Korsakoff's kid". He has shown great strength of character during his stay. He has accepted his illness and its cause. He is now walking with a stick intends to push himself into jogging again one day. The joke is, and Bill is a joker, that I don't think he ever jogged before. He is very motivated: he prepares meals for himself and others; he enjoys collecting stamps and coins; he makes models and keeps us all on our toes, and is moving more towards independence. Bill now knows the date and year and, more importantly, knows he is in his forties and not his twenties. He has also learned how to deal with and recognise intrusive thoughts or memories from the past and now knows what is real and not.

His room is plastered with notes and he keeps a diary better that any one I know. He knows his limitations and he admits he had a drink problem and knows more than the others in the unit that he can't risk what he has recovered by drinking alcohol again.

The home Bill was placed in was extremely supportive and caring and the management and staff were happy to be given advice and care plans. They all worked with us at all times to the benefit of the resident. It was this home and the company who owned it that gave me the opportunity to increase the size of the unit.

When I was given the opportunity to move into larger premises from a small, three-bedded residential home, it was a difficult time. I realised that the service we were providing needed to be extended to offer more clients a rehabilitation programme and in fact a new way of life.

Within the smaller residential home we had cared for ARBD sufferers for four years, developing tactics for the management and rehabilitation of Korsakoff's syndrome. Each client came along with their own needs and differing degrees of brain damage. All are individual and each needing individualised packages of care. Yet they each support and understand the problems and concerns of each other.

Each needed a purpose to get up in the morning; they needed activity and compassionate companionship.

They were, and still are, very caring of each other. They do not appear to get on each other's nerves and you never hear a resident saying to another resident, "You've already told me that," even when the same anecdote, story or joke is being told. I have still not worked out whether this is due to their short-term memory problem, good manners or genuinely caring natures. To me they are all like a chrysalis, or as I have said to them many times, like Scrooge in "A Christmas Carol," beginning a new life.

Time and again when f assess clients prior to admission, I am told he/she is funny, and a great character unless they have a drink, and then they are aggressive, violent and difficult. One relative, after her father had been with us for 6 months, said, "I now have the father I knew he could be, but he never was because of the alcohol."

Our move to the specialist unit took place in November 2002. Three residents moved from Bryn Derw and joined Bill.

Within the first two months two new residents and two members of staff joined us and the development of the larger unit was on its way.

The logistics of putting into action care plans, activities and rehabilitation programmes on an increased scale, without losing the homely atmosphere and the therapeutic environment has been difficult at times.

These programmes can only be met and developed with high staffing levels and devoted, caring individuals in these positions. To ensure staff levels match the programmes, funding is a major issue and I spend more of my time than I am personally happy with developing care packages and applying for funding for future clients.

As for the staff, they have come together from many areas of care and an excellent team is developing. Each comes with their own personality and individual skills, but they are non-judgemental and extremely supportive.

The unit now has 11 residents and in the final phase we will have an 18 bedded admission and continuing care unit. A six-bed rehabilitation unit has been developed, where clients are encouraged to work together, to clean, prepare meals and recover their lost abilities together. On this unit we start to help them to develop new social networks and a work ethos is followed to provide them with a purpose. We all have a need to be needed and these individuals have a greater need than most.

We spend many hours on the subject of alcohol and work towards the day that they can enter a drinking establishment on their own and order a cola. To this end we have had nights out and lots of fun in clubs and intend to go on holiday later this year.

The upstairs of the unit -consists of six independent living units where clients develop their skills further, before their future return to the local community. Our clients very much wish to help others with this problem and remain in the area to provide support to new residents in the unit: moving on but yet supported and not isolated. Judging by the many referrals and enquiries from all over the country, this unit is hopefully the start of many others. We would like to express our thanks to the two student nurses and one social work student who recently joined us on placement, for their valuable contribution to the development of the first stages of the unit. One student put a short note about the specialist unit on the Internet and we were shocked by the responses, some from as far as New Zealand. We at this specialist unit want to let people know that there is life after ARBD and it can be a lot better. Some of our chrysalises have made beautiful butterflies. [ home ]