Assessment

Videos

Executive dysfunction and cognition

Kaanthan Jawahar

Recorded at the ARBD network and ACUK online conference September 2023

ARBD management through to recovery

Julia Lewis

In this short video learn about the management and recovery of Alcohol Related Brain Damage

Examination of reasoning

Dr Wilson

In this short video learn about the examination of reasoning in capacity assessment

Documentation

The Clinical Diagnosis of ARBD

Alcohol Related Brain Damage (ARBD) is an umbrella term.  It includes presentations of differing degrees and nature of cognitive damage as a consequence of alcohol dependency and/or thiamine deficiency. As there are no specific instruments validated for the diagnosis of ARBD, this document attempts to provide a pragmatic overview designed to facilitate its recognition.

High risk populations

ARBD may occur after several years of alcohol dependency. Evidence suggests that a significant proportion of individuals attending services for the treatment of alcohol dependency in community settings experience varying degrees of ARBD. There is some evidence suggesting that multiple withdrawals from alcohol are a risk factor for cognitive impairment. ARBD may contribute towards poor compliance with community treatment regimes, due to the undiagnosed cognitive disorders. Other populations that may well have a high prevalence of ARBD include individuals with frequent visits to accident and emergency departments or admissions into acute medical care for the treatment of the physical complications of alcohol dependency. Some surveys have indicated that patients that are ‘difficult to place’, with resultant long-stays in acute hospital care have a high prevalence of ARBD. (This is of course dependent on many other service-related factors as well). Studies in Glasgow have indicated that the homeless population have a high prevalence of ARBD.

Populations at risk of developing Wernicke’s Encephalopathy may be identified through clinical observation. In the case of ARBD, signs of malnutrition, early neurological problems and psychological changes in the context of heavy drinking may all be taken as potential warning signs. These include loss of appetite, weight loss in the past year, decrease in BMI, history of recurrent vomiting and excessive carbohydrate intake. Psychological problems may include insomnia, anxiety, fatigue, weakness and apathy, changes in concentration and early memory loss. Neurological problems may include giddiness, changes in balance, numbness or pins and needles and double vision.

Overview of clinical diagnosis

There are no validated, specific tests for the diagnosis of ARBD. A research project conducted in USA in 2003 found that a combination of a history of heavy alcohol drinking (30 units for women, 50 units for men per week) of at least a duration of five years, combined with evidence of cognitive impairment (of similar degree to that of dementia) and exclusion of cerebrovascular disease identified people with long standing ARBD (described as alcohol dementia).

In diagnosing ARBD, it is important to establish three major issues. Firstly, is there evidence of sustained cognitive damage? The use of the term ‘sustained’ is to exclude those individuals that are suffering from withdrawal. Assessments should be undertaken after a withdrawal regime has ended. In the original research of 2003, the author defined ‘alcohol dementia’ as people suffering from cognitive impairment after three months of abstinence in order to differentiate from those in which cognitive symptoms spontaneously resolved. This occurs quite frequently in the first three months. However, there are problems with this approach in an NHS setting.  It is difficult to maintain someone in an acute hospital bed solely to see if cognition spontaneously improves. Consequently, the pragmatic definition of ARBD includes individuals with cognitive impairment being evident after withdrawal.

Secondly, it is important that there is a history of alcohol dependency that is likely to be the primary cause of the cognitive impairment. As mentioned above, a three-year history of drinking at least 30 (women) or 50 (men) units a week (usually against a background of previous, heavy social drinking) is likely to have a significant effect on cognition. Such a history may be inferred or documented by hospital notes but gaining a corroborative history from carer, family or friend is always useful.

Thirdly, it is important to exclude other causes of cognitive impairment. Up to 25% of ARBD patients presenting through acute care will have some evidence of early cerebrovascular disease or head trauma. In the assessment of a patient, a clinical decision must be made concerning the relevance of these conditions (if present). When there is evidence of sustained and obvious cognitive impairment following the trauma or stroke (vascular event) then it may be appropriate to consider these as the main problem. However, what evidence there is indicates that individuals with ARBD and minor head trauma or early cerebrovascular disease can respond to ARBD management. It is important to note that individuals with a history of heavy drinking are more likely to develop dementia (usually vascular dementia) later in life. A progressive dementia of this nature should be differentiated from ARBD. If there is continued deterioration in the context of abstinence, then a diagnosis of ARBD is unlikely.

Cognitive assessment

There is a wide variety of instruments designed to quantify cognitive deficits. Most of them employ ‘cut-off’ scores that indicate the possibility of dementia. It is not the purpose of this brief document to provide a comprehensive review. We provide a brief critique of a few more commonly used instruments These include the 6-CIT amongst many others. This is an example of a very brief instrument often used in general practice and community settings. Another instrument frequently employed is the Mini Mental State Examination (MMSE). The disadvantage with these instruments is that they fail to capture changes in cognition associated with frontal lobe problems (dysexecutive syndrome) which are very common in ARBD. Slightly longer instruments that do include some aspects of frontal lobe dysfunction include the Montreal Cognitive Assessment (MoCA) (https://www.mocatest.org/the-moca-test/). This test is designed to pick up mild cognitive impairment and can play a useful role in identification of people with ARBD. It is freely available on the web. A slightly longer instrument (in terms of time to administer) is the Addenbrooke’s Cognitive Examination (ACE-R) https://advancemed.com.au/wp-content/uploads/2019/01/ace-r_aus_versiona1.pdf . It is free to download and easily administered and the scoring instructions are easy to follow. A degree of standardisation and training is recommended and there are now free access on-line training courses available.

When using these tests, it is important to note that these are not diagnostic tests. They are designed to identify people that exhibit some aspects of cognitive dysfunction. They have not been validated in the context of ARBD. Consequently, they certainly exclude important aspects of cognitive dysfunction experienced by people with ARBD and the cut-off scores may not necessarily be applicable. Despite these important issues, the MoCA and the ACE-R offer a structure for conducting a brief cognitive examination for clinicians that have no prior training in undertaking a cognitive examination and provide the context of cut-off scores that have been validated in other conditions.


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ARBD and Capacity Assessment

Several of the characteristics of ARBD can be problematical in the assessment of capacity, particularly when complex decisions are being considered.

Firstly, ARBD is frequently characterised by memory impairment. Usually working memory is well preserved. In this context, this refers to that component of memory that enables the immediate processing of information. Consequently, the individual may not, at a superficial level, appear to have a memory problem as they can follow a conversation and answer questions plausibly. However, short- and long-term memories are frequently affected. An attempt should be made to examine the implications of these memory problems in terms of the decision-making process.

Short term memory (STM) refers to the individual’s ability to learn new information and hold it for more than the few seconds or minutes.

Practical suggestions: Other than a formal test of STM, provide the individual with information, (for example: relating to their condition) and encourage them to learn it by repeating it back to you. Having done this, change conversational topic, or better still, take a break in the interview and then when returning, explore whether the individual can recall the information. Individuals with STM problems frequently fail to recall that you had the conversation, or at least, have forgotten its content. STM loss of this degree is likely to incapacitate the person in terms of the decision under examination, even though they may have agreed to an arrangement during the conversation.

Long term memory (LTM) refers to the individual’s ability to recall long-standing memories from the past, usually of a biographical nature. Many individuals with ARBD experience loss of LTM to varying degrees. In many cases the individual’s history of very heavy drinking, multiple hospital admissions, social and financial problems, break-up of family, loss of jobs and a police or criminal record will be lost to the individual in totality or in part. It is very easy for the capacity assessor to assume that the ARBD sufferer can recall these events and has learned from their experiences; potentially influencing future decisions. However, with LTM loss of up to twenty-five years, this may not be the case. The problem of memory loss is frequently complicated by confabulations. These are false memories that the sufferer believes. They may be plausible.

Practical suggestions: It is important to have some familiarity with the individual’s biographical history. An attempt should be made to establish the drinking history and relevant medical and social histories prior to assessing the individual. A corroborative history from a family friend/carer/relative can play a very important role. Long term memory loss can then be informally evaluated and its potential impact on decision making can be judged.  It is important to make the individual aware of his/her past issues, discuss them and see if they are likely to influence the decision under question. It is often the case that the individual may not believe that these problems have arisen in the past.

Secondly: ARBD sufferers will often present with dysexecutive syndrome. This syndrome is characterised by problems in reasoning. Planning things and problem solving and sorting out more complicated aspects of daily living can become problematical. This may be obvious to relatives, friends, and carers. Common examples include difficulty in making joint arrangements and sorting of bills.  Other features of the dysexecutive syndrome include problems in paying attention and concentrating on things with a tendency to fail to complete tasks. In addition to these reasoning problems, noticeable changes become evident in speech. More-than-usual difficulties in finding words and completion of sentences are frequently experienced.

Increasing problems in managing day-day tasks and personal environment may become evident.  Often here is an impact on the individual’s appreciation of risk relating to decisions and their implications. Impulsive behaviour is common. The individual may become disinhibited. This may be of a sexual nature. Apathy and an increasing lethargy with lack of self-awareness and self-neglect may become more obvious.

These signs are usually couched in the context of loss of emotional and social awareness. The individual loses the ability to understand other people’s emotional states, anticipate their desires, beliefs and knowledge.  They lose their ability to empathise.

 It is obvious that some, if not all these issues may impinge upon the process of decision making (depending on the nature of the decision), particularly in disrupting the processes of understanding and the use and weighing up of information.

Practical suggestions: Again, information relating to the individual’s recent past may help to define how problematical these more subtle cognitive deficits are. Examples of difficulty in arranging things, managing household bills and budgets and a frequent history of failing to complete tasks may all provide additional and important information for the assessor to consider. A corroborative history is usually of great value.

Thirdly, the issue of trying to assess whether the cognitive damage is likely to affect future behaviour and compliance with agreed interventions/actions may prove problematical. Apart from the obvious problems of STM difficulty (remembering what has been planned or agreed), there are the more subtle influences of dysexecutive syndrome. Problems of social awareness, increased risk taking and being unable to anticipate implications of actions can cause future difficulties in maintaining compliance with previously agreed arrangements. These issues tend to be less obvious in the context of a structured interview in which prompts, directive questioning, and clear expectations are evident. Likewise, a structured social environment with explicit rules and monitoring  (such as a nursing home, residential setting or hospital setting) will strongly influence behaviour. In the context of the less well-defined rules and obligations of general society, without the obvious imposition of social constraints, people with dysexecutive syndrome will often run into significant difficulties that are not evident in a more structured environment

Practical suggestions: The individual’s personal history, the events and problems they have encountered in the more recent past, prior to any institutionalisation should be considered within the assessment process. Relevant indicators of future problematical behaviour (because of cognitive damage) may include past, recurrent difficulties in managing relationships, evidence of vulnerability (social, financial or physical), self-neglect and other risky behaviours (not necessarily associated with alcohol consumption). This information is best recruited through a corroborative history of a carer/family member or friend.

Lastly, loss of LTM, the inability to learn new information (STM) and problems of reasoning may well contribute to lack of insight. This should be differentiated from the tendency of the alcohol dependent to be in ‘denial’ of their history or drinking behaviour. Denial can be considered as a psychological mechanism by which the individual refuses to accept the problems they have. In denying the issues, the individual protects themselves from anxiety, guilt or other psychologically discomforting experiences they might have if they were to accept responsibility for their problems. In the context of ARBD, lack of insight is a consequence of cognitive damage. The individual is neither consciously nor unconsciously aware of their problems. The relationship between ‘denial’ and ‘lack of insight’ is certainly complicated. As cognitive damage increases over time, it is likely that denial becomes less of a problem and lack of insight becomes more likely.

An individual lacking insight will obviously experience significant problems in understanding and weighing up the pros and cons relating to a decision, particularly if this decision concerns the need for help and future limitation of drinking.

Practical suggestions: When assessing ‘lack of insight’ several pointers are useful: If there is significant evidence of long-term memory problems, reasoning difficulties and problems with learning new information then there is a significant likelihood of some degree of loss of insight.

If a person has difficulty in understanding the implications of on-going drinking (even when it is explained to them) then there may be cognitive problems relating to understanding and self-awareness. Has the individual got alternative explanations regarding their health problems, or do they believe that they have no problems despite the obvious evidence?

The Capacity Assessment

In order to undertake a comprehensive capacity assessment of a person suffering from ARBD it is essential to be familiar with his or her personal history and have access to a corroborative history.

This document refers to the COP3-eng document as a template

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/958044/cop3-eng.pdf

The background

Section 4 of the document provides a section for a comprehensive explanation of the circumstances in which the assessment is taking place. This is an often-under-utilised section:

Section 4: ‘Please provide any further information about the circumstances of the person to whom the application relates that would be useful to the practitioner in assessing his or her capacity to make any decision(s) that is the subject of your application’.

It refers the assessor to note 2: Please provide any further information about the circumstances of the person to whom the application relates that would be relevant in assessing their capacity.

Practical suggestions: This section provides an opportunity for the assessor to furnish evidence relating to the individual’s past and issues that might have arisen because of cognitive deficits. It gives financial problems and decision-making difficulties as an example. Other issues known to be affected by cognitive impairment include poor compliance with treatment programs, self-neglect, and other risky behaviours.  Evidence of appropriate behaviour in institutions, compared with decompensated or antisocial behaviour in less structured environments may be a consequence of cognitive damage. Recent/current examples of cognitive damage may be entered here, including observations from nurses, carers and family.

The presence of mental impairment

The next section requires the assessor to provide a diagnosis (where there is one), but the document implies that a general statement of mental impairment is acceptable when there is no formal diagnosis.

Section 7.1: ‘The person to whom the application relates has the following impairment of, or disturbance in the functioning of, the mind or brain. Where this impairment or disturbance arises out of a specific diagnosis, please set out the diagnosis or diagnoses here’ requires.

Practical suggestions: in the case of ARBD, the general term; ‘alcohol related cognitive impairment ‘could be acceptable in the absence of a clear diagnosis such as Wernicke-Korsakoff syndrome.

The next part of 7.1 is the recording of the decision(s) relating to the capacity assessment.

Practical suggestions: An assessor will be aware that an assessment of capacity is decision specific, and these will vary from person to person and situation to situation. However, ARBD sufferers are often confronted with two major decisions when being assessed:

  1. Is the cognitive damage of such a degree that the individual is unable to make a decision concerning further alcohol drinking?
  2. Is the cognitive damage interfering with the person’s capacity to make a decision relating to the care that they need?

Section 7.2 requests information as to why individuals may not be able to make a specific decision. The first subsection requires information regarding the person’s ability to understand the relevant information.

Practical suggestions: It is not usually sufficient to limit the assessment of ‘understanding’ to asking the person if they understand without probing and examining the issue in more depth. Questions might include:

  • What is wrong with you that means you might need help?
    • Explore the person’s understanding of their problem:
    • Do they have any insight into a diagnosed condition and related cognitive difficulties?
    • Explore the possible implications of their decisions/behaviour and the effects on other people/society
  • What are the practical issues with which you need help?
  • Focusing on the practical (related to presentation) for example:
    • Why is there no food in the house?
    • How are you going to get out of debt?
    • How do you feel about your sexual behaviour in public?
    • What do other people feel about your behaviour?
  • What sort of help do you think you need
  • How much help do you need?
  • Who is going to help you?
  • How is this help going to be organised?

The next sub section of 7.2 addresses the issue of memory by asking if the person can retain the information that has been furnished.

Practical suggestions: As already mentioned, it is important not to be misled by a ‘working memory’ when STM may be compromised. Helping the individual to learn the information, providing written material and rehearsal are all aspects of good practice. It is then important to test that the individual can recall the information some few minutes later. This could be done in the context of a second or ‘split’ assessment, incorporating a short period of rest or change of subject. It is now well established that even if an individual makes a decision within the interview context but is later unable to remember the decision that has been made due to cognitive damage, then capacity should be questioned.

The next sub-section asks: ‘Is he or she is unable to use or weigh the following relevant information as part of the process of making the decision(s) (please give details);’

Practical suggestions: as is the case with ‘understanding’, weighing up and using the information not only draws on memory but also requires an intact executive function. It is recommended that the assessor attempts to interrogate the process and ‘depth’ of weighing up the information and the implications and risks associated with the decision. Relevant questions may include:

  • Why would you not want support?

(Are reasons weighty enough to balance against the need for support?)

  • What happens if you do not get support?

(What are the risks you face if you do not get support?)

The last sub section of 7.2 requires a comment regarding the ability of the individual to communicate his/her decision.

Practical issues: Language can be affected in cases of ARBD. In more severe cases, of confusion, attention and concentration problems may prove intrusive and disruptive of normal conversation. ARBD can affect the front part of the brain, rendering difficulty in sentence completion and problems in word finding. In cases in which there are communication difficulties, written material may be helpful.

 Section 7.3 of the document asks for a summary of the issues that have contributed towards the assessor’s decision of incapacity.

Practical issues: This section enables the assessor to present information relating to the history of the patient. A summary of the memory problems and their implications, and evidence relating to understanding, memory, weighing up and communicating the decision. It is an important section in that it brings the evidence together in a reasoned and logical fashion, demonstrating a thorough assessment and substantiated reasoning.

Summary

In assessing the capacity of an individual with ARBD, the assessor is likely to make a mistake if the assessment is confined to the information gleaned from the assessment interview alone. Preparatory work is essential and includes familiarity with the individual’s current circumstances and history. A corroborative history is strongly recommended in view of the LTM loss, confabulations, and potential lack of insight. Likewise, due to the issues relating to dysexecutive syndrome, background information will also provide a strong indicator regarding how the individual will cope in the context of general society, outside institutional settings. in addition, clarifying the degree of memory impairment, emphasis should be placed on and exploring problems in understanding and weighing up information as crucial components of the decision-making process.

 
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Principles of ARBD management

There are several principal issues that are worth summarising

1. One of the first issues to consider is whether the individual has the capacity to make decisions. Pertinent decisions may include:
deciding about:
a. Future alcohol drinking

b. The care and help that is needed regarding the management of his or her health and safety.

Issues regarding capacity assessment in cases of ARBD can be found under ‘resources’ on this web site (ARBD.net). If the individual is deemed not to have capacity with regard to the relevant decision, then the employment of the Mental Capacity Act should be considered.

2. Individuals that are deemed to be capacitated should be referred to the appropriate alcohol treatment services. Recovery hinges on the maintenance of abstinence, support for this is vitally important and that, as long as treatment services can adapt their approach to the needs of someone with cognitive impairment, there’s no reason why community services wouldn’t be able to work with them (see document Working with ARBD sufferers in the community: ARBD.net : resources).

3. Provided a person with ARBD maintains abstinence and receives a well-balanced nutrition, (supplemented by oral thiamine in the first few months) then there is a very good chance that cognition will improve.
a. Rapid improvement may occur within the first three months of abstinence (Cox et al 2004).

b. Residual cognitive deficits may continue to improve over the following 1-3 years as the brain re-grows. (Sullivan & Pfefferbaum, 2005; Bartels et al, 2007)

4. Improvement in cognition can be expected in 75% of cases, with a significant majority living relatively independently after this time (Wilson et al 2012). Smith and Hillman (1999) reported that 25% make a complete recovery, 25% make a significant recovery, 25% make a slight recovery, and the remaining 25% make no recovery.

5. Therapeutic and rehabilitative processes have been informed by the rehabilitation of patients with acquired brain injury. However, it is important to note that the active management of a person with severe ARBD may take an average of 1-3 years and in complex cases, longer periods of time may be required. (Wilson et al 2012)

6. Management is best undertaken in the context of a multidisciplinary team with some experience in working with patients with cognitive damage. A close working relationship with social services is required.

7. Principal themes of intervention include:
a. Development of the individual’s optimum level of autonomy (Ylvisaker and Feeney 1998). This is a holistic approach including the development of the emotional, intellectual, social, physical, financial and behavioural function of the individual in the context of natural recovery process (Prigatano, et al 1996).

b. The programme should be facilitative; the individual should be given as much control of the management of their own rehabilitation as possible in the context of on-going risk management (Ylvisaker and Feeney 1998, Bates, et al. 2002).

c. The rehabilitation of the individual’s life skills must be tailored to the individual’s needs and priorities and is carried out in the context of the development of a therapeutic relationship (Ylvisaker and Feeney 1998, Bates et al. 2002).

d. Rehabilitation is an active process, and may demand therapeutic time, on-going re-assessment (with defined goals), care planning and long-term engagement (Wilson et al 2012).

e. Rehabilitation should focus on life skill development and can take place in the home, institutions and other ‘real world’ settings (Ylvisaker and Feeney 1998).

f. Non-experienced, care workers, family and community agents can be supervised in facilitating the rehabilitation process (Wilson et al 2012).

g. Baddeley et al (2002) advocates memory and orientation aids as playing an important role in rehabilitation.

8. Five management phases have been described (Wilson et al 2012)
a. Stabilisation Phase: This concerns the acute physical management and stabilisation of the individual going through withdrawal or being treated for encephalopathy and other alcohol related problems.

b. Assessment Phase: during the first three months cognition is likely to improve, during which on-going assessment is undertaken.

c. Therapeutic phase: This can last up to three years during which the brain regrows, and cognition can further improve. During this phase alcohol education and facilitating progression in activities of daily living are emphasised.

d. Adaptive Phase: Rate of cognitive and behavioural improvement has slowed or ceased; social and physical environment is adapted to optimize independence.

e. Social integration and relapse prevention phase. This phase may require long term follow-up.

A detailed description of the five therapeutic phases can be found in the reference document section of this website (ARBD.net)

9. Flexible accommodation and support: The patient may have been placed in a highly supportive and structured environment after phase 1 (Physical stabilisation and treatment) (e.g. a mental health nursing home). As cognition improves, independence increases, and protective and support needs will change. These changes should be reflected in changes in the living circumstances of the patient, with transfer to less dependent environments, such as residential, supported living or return to their own homes.

10. On-going assessment of Mental Capacity: The patient’s capacity to make critical decisions concerning their management is likely to change over time. Consequently, it is necessary to frequently re-assess capacity, and facilitate decision making.

References

Baddeley AD, Kopelman MD, Wilson BA. (2002) Handbook of Memory Disorders. 2nd edn. Chichester: Wiley;.
Bartels C, Kunert H, Stawicki S, et al (2007) Recovery of hippocampus-related functions in chronic alcoholics during monitored long-term abstinence. Alcohol and Alcoholism, 42: 92–102.
Bates M, Bowden S, Barry D (2002) Neurocognitive impairment associated with alcohol use disorders: implications for treatment. Experimental and Clinical Psychopharmacology, 10: 193–212.
Cox S, Anderson I, McCabe L (eds) (2004) A Fuller Life: Report of the Expert Group on Alcohol Related Brain Damage. Dementia Services Development Centre, University of Stirling.
Prigatano GP, Glisky EL, et al (1996) Cognitive rehabilitation after traumatic brain injury. In PW Corrigan and S C. Yudofsky (eds) Cognitive rehabilitation for neuropsychiatric disorders. Washington DC: APA
Smith I, Hillman A. (1999) Management of Alcohol Korsakoff ’s syndrome. Advances in Psychiatric Treatment, 5, 271–8.
Sullivan EV, Pfefferbaum A (2005) Neurocircuitry in alcoholism: a substrate of disruption and repair. Psychopharmacology, 180: 583–94.
Wilson K., Halsey A., Macpherson H., Billington J., Hill S., Johnstone G, Rajue K., Abbot P (2012) The psychosocial rehabilitation of patients with alcohol-related brain damage in the community. Alcohol and Alcoholism 47, (3) 304-11.
Ylvisaker M. Feeney TJ. (1998) Collaborative brain intervention: positive Everyday routines. San Diago, CA: Singular.

 
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