Studies on ageing: ECA series in conjunction with the Sheffield Institute for Studies on Ageing (SISA)

Clients invariably want to achieve something. A major problem with the perfectly fit and able client can be discerning exactly what. Some have strong but misconceived ideas. Some know nothing at all and need to be led back through some basics before progress can be made. Still more are simply vague and need encouragement to tease out underlying issues. Some omit vital information. Having reached the end of one set of apparently concluded instructions, the client pipes up: “But that still leaves the problem of my mistress and my children on the other side of town.” Pro-forma instructions have a useful role in avoiding such embarrassing situations. But where the communication skills of the client are impaired it is inevitably more difficult and legal advisers can feel exposed by a lack of understanding about the nature and impact of the communication problem. In this article, Pam Enderby, professor of rehabilitation at the University of Sheffield, helps advisers understand some of the complex issues surrounding communication and capability.

The likelihood of having a stroke increases with age. One third of the patients who have a stroke will suffer a speech and/or language problem (aphasia), which may compromise the ability to read, write and understand, as well as to speak coherently. Many people who are challenged with the sudden onset of a condition, such as a stroke, will turn their attention to making, or changing, their will. It is important to consider issues to do with the loss of the ability to communicate, along with the requirements for demonstrating capacity when addressing the issue as to whether somebody with aphasia is in a position to take the lead role and be sufficiently responsible to engage in such activities.

The nature of aphasia/dysphasia1

While a common problem of communication following stroke is dysphasia, a language disorder, there may well be other problems with speaking that can be mistaken for dysphasia. These can be the inability to articulate words clearly – a problem with the muscles called dysarthria, or to programme the muscles appropriately so as to provide the sequential movements that are required, termed dyspraxia. These latter two impairments do not usually compromise reading, writing and understanding abilities and, thus, it is easier to establish whether the patient (or client) has full understanding of the issues involved.

Dysphasia affects language rather than speaking capacity. The ability to name things correctly and recall the right words and sentence structure may be severe, rendering the person practically unable to communicate, or mild leading to the occasional difficulty in naming or using less common vocabulary. Dysphasia affects the ability to understand language to a greater or lesser extent. Persons affected severely may have difficulty in understanding even basic sentences spoken to them, relating to the here and now. Mild problems in this area are not uncommon and would lead to a person having difficulty with quick changes of subject, less familiar language, nuances such as humour and sarcasm. An individual with dysphasia who is unable to speak, may or may not have their ability to understand speech compromised to a greater or lesser extent. It is important to remember that the majority of people with dysphasia, while being able to understand everyday situations well, may have difficulties with more subtle aspects of language, which could cause problems when being involved in less familiar communication such as that required in legal transactions. While the majority of dysphasic patients will have both receptive (understanding) and expressive difficulties, there is frequently a disparity between the modalities. For example, the dysphasic person may well be able to understand more than they can express or vice versa. Expression and reception of language are not distinct separate facilities; the interaction between these facilities is commonly accepted. The difficulty with understanding may be related to the inability to process or retain some types of auditory information. This may be affected by the nature of the vocabulary, syntax, context and the speed and intonation of the speaker. Abstract issues not related to the present, quick changes of topic, inconsistent non-verbal cues, fatigue and emotion can all have a negative affect on whether the person fully understands what is going on.

Patients with expressive dysphasia can have difficulty in accessing the words they wish to use in order to communicate. Some may be able to identify the first sound of a word that they are grappling with, but this can be misleading as many patients will indicate a letter, either verbally or in writing, which is in fact incorrect for the word they are wishing to communicate. While some patients with dysphasia will struggle from word to word, others will speak fluently but using a nonsense vocabulary, showing little ability to correct themselves or recall appropriate vocabulary. Nonsense words and sounds can be interspersed with recognisable words, which may or may not be related to the subject in hand. However, intonation can sometimes assist the listener to comprehend the intention of the speaker.

Many persons with dysphasia will be able to use automatic speech, which is at a reflex level and tends to be in response to certain stimuli; for example, a patient may be able to count to 20, say the days of the week, or complete familiar phrases. This automatic speech can give the appearance of being meaningful but it may not be.

Telegrammatic speaking style is not uncommon. For those younger readers who never sent a telegram before their abolition back in 1982, mobile phone texting is a perhaps a useful stylistic analogy. A person with telegrammatic dysphasia may use one word to indicate the topic of conversation, such as “sandwich”. Caution has to be taken with regard to understanding such telegrammatic utterances as it may well be that the person is either wishing to communicate that they would like a sandwich or they would not like a sandwich. A listener might be misdirected when the person says “certainly” as affirmation rather than “certainly not”. Thus, the message is dependent upon the interpretation of the listener and great care must be taken to ensure that what is understood is what is intended by the person with dysphasia. Again text messages might be a useful analogy as any reader with children who continually fall out with their friends over misinterpreted text messages will be able to relate.

Persons with dysphasia may have associated difficulties that are worth considering in this context. Some, for example, will have difficulties related to reading and writing. Again, these can lead to an individual being unable to read or write at all to those who have occasional spelling problems. Many persons with dysphasia will find it difficult to read long texts, unfamiliar passages and to comprehend written vocabulary that is less familiar.

People with reading problems will frequently try and disguise this difficulty by holding a newspaper up and giving the appearance of reading it in depth. People with only slight problems of reading and writing may be unaware of these occasional omissions, substitutions or misunderstandings. They may be able to produce a high standard of writing and reading, with particular concentration and diligence, which can deteriorate if they become stressed or are in a more distracting environment.

Dyscalculia, a problem with processing numeric concepts, is another difficulty associated with dysphasia, which is often overlooked. Numeric difficulty may be associated with problems in appreciating such issues as proportion and frequency.

Persons who have had a stroke will not infrequently complain that they suffer from fatigue. The additional difficulty of having dysphasia, which requires an individual to concentrate in all communication, leads to particular problems with fatigue. Inattention and difficulty with concentration for lengths of time can be problematic to some.

Two further associated symptoms need to be fully understood when dealing with persons with dysphasia. The first is the difficulty of controlling one’s emotions. Emotional ability leads to an individual laughing or crying more easily and sometimes when they are neither amused nor distraught. It is easy for someone unfamiliar with the individual to misunderstand these emotional outbursts. The second symptom associated with dysphasia that is of particular relevance in a legal context is the difficulty of perseveration. This is where a sound or movement is repeated inappropriately. For example, a person may respond to a question appropriately with the answer “yes”, only to use this word again to a subsequent question when that answer was not the intended one. A person may perseverate on any word, such as the name of an individual, a nonsense word, in writing as well as in speech. It is important when trying to assess whether an individual has understood something, that this issue of perseveration is particularly considered. Repeated affirmations cannot necessarily be taken for granted as indicating that the person intends that communication.

When considering the capacity for the person with dysphasia to make decisions, it is important to consider the social pressures on that person and those who are in caring roles. People with speech and language problems, like other disabled people, may wish to appear to be as “normal” as possible and, therefore, may endeavour to act in an appropriate socially acceptable manner. Thus, the person may laugh when a joke is said by picking up the visual clues of the social context even when they have not understood the joke. A person may watch television although it is difficult for them to understand that medium and may “read” a newspaper in an apparently interested fashion while having difficulty in comprehending the material. Speech and language therapists realise that it is easy to become misled with regard to the abilities of a dysphasic person by observing behaviours. It is not uncommon for a spouse to attribute much greater ability to the afflicted partner than is demonstrated in objective testing. In addition, a partner with a long-standing knowledge of an individual may predict views and intentions without these being clearly stated by the individual. Furthermore, as with others in dependent positions, the issue of trying to please or control carers by complying or not complying with their wishes has to be borne in mind.

Legal considerations

The absence of any statutory definition of testamentary capacity has inevitably led to a strong body of case law on the subject. The necessary mental capacity required for making a will was described by Cockburn CJ in Banks -v- Goodfellow 1870 (L.R.5Q.B) and remains good authority. In essence, it is essential for a person making the will to:

Understand the nature of the act (of making a will) and its effects;
Understand the extent of the property for disposal;
Comprehend and appreciate the claims on the estate, which should be given consideration;
Not suffer any disorder of the mind that should poison affections, pervert the sense of right or prevent the exercise of natural faculties.

It is useful to consider these four points with regard to dysphasia:

Understanding the nature of the act and its effect. Patients with high-level dysphasia have been found to have difficulty with comprehension. These difficulties may be due to the inability to translate a symbolic code, corruption of interpretation of the symbolic code or difficulty with processing unfamiliar content or content given at speed. While it is unnecessary that a person making a will should understand the will in its full legal glory, it is important that the person has the knowledge of the difficult concept of disposal. They must know what they want to dispose of, and to whom, as well as the effects that this would have on other potential beneficiaries or those who may have a claim. Making a will is a highly conceptual task requiring memory of the past, knowledge of the present and speculation for the future in terms of assets, relative values and fiscal consequences;
Understanding the extent of the property for disposition. Anybody making a will must have a good knowledge of what is available for disposal. Frequently, property may be divided, for example, where proportions of the estate go to various children. The concepts of proportion, fractions, etc., may be difficult for a person with a moderate to severe dysphasia to comprehend;
Comprehends and appreciates the claims. When making a will, it is necessary to consider the responsibilities relating to testamentary actions. If the dysphasic person does not wish to provide for the family in line with pre-morbid intentions, then time and skill must be taken to elicit and document the reasons for this significant change other than the person has overlooked, forgotten or misunderstood the serious nature of the activity;
No disorder of mind shall poison affections, pervert sense of right or prevent the exercise of natural facilities. This aspect causes particular concern when considering the dysphasic person. It is generally agreed that those suffering impairments and disabilities can be subject to social pressures, which to some extent may be self imposed. The wish to please, the awareness of dependence and the desire to have authority may all lead to such pressures.

Recommended procedure

Recognising the problems of the person with dysphasia making, or changing, a will should assist all those medical advisers, lawyers and speech and language therapists to act in a way that ensures that all are protected and that the will is valid. It is not impossible for a person with dysphasia to make a secure will. However, it is essential that certain safeguards are considered at an early stage:

Detailed assessment. It is important that the person with this type of disability has an up-to-date and detailed assessment, which objectively establishes the level of ability, as well as the level of difficulty related to comprehension, expression, reading, writing and numeracy. Anecdotal descriptions, even by an experienced doctor or therapist, can be open to question. A proficient speech and language therapist who has specialist knowledge with dysphasia should undertake this assessment so that objective evidence can be recorded. Issues that assist with facilitating comprehension should be considered and made explicit;
Documentation.It is important that all examinations, specialist assessments and observations are fully recorded in a detailed and unambiguous fashion;
Determining whether the person wishes to make a will. It is useful to establish how the patient expressed their wish to make or change a will. The medical or therapy adviser should be able to establish whether the reported expressed wish is in line with the dysphasic person’s abilities. For example, a severe dysphasic who is unable to do little more than perseverate, may have been reported to have verbally expressed that he wished to change his will. This would appear to be unlikely. However, questioning how this communication was given and interpreted will assist at a later stage if the intentions are contested;
Establishing a consistent communication system. A dysphasic person is usually able to communicate in some way. It is important to establish a consistent, clear and unequivocal system in order that indications of affirmation or denial can be appropriately attributed;
Systematic approach. All care should be taken to ensure that, at the time of signing the will, the situation is structured to assist the person with dysphasia. The nature of dysphasia should have been explained to the legal advisers present. It is important to draw their attention to other concomitant difficulties as described above. It is generally thought that reducing the number of people involved is helpful to assist the person to concentrate and to reduce distraction. It is important that medical advisers and therapists maintain objectivity and document the whole procedure in a way that will assist if further evidence is required at a later stage. Pressure and fatigue for the testator should be avoided even if the professionals have time constraints.
Confirmation. It is useful to establish that anything that has been agreed on one day is understood and confirmed on a subsequent occasion. It may be useful to check whether a patient would dissent if misinformation or a different scenario was presented to him on the second day than on the first. This would help to establish whether a patient is complying without truly understanding. Checking frequently to ensure that a patient has not perseverated is important.

There will be persons with dysphasia who are unable to comply with the requirements to make a will. Critchley suggested in 1970 that: “There are fewer aphasics possessing testamentary capacity than I thought was the case 40 years ago, that is, when I first considered the problem. In aphasia, an absolute integrity of intellectual function is, I believe, the exception and not the rule,” (M Critchley, Aphasiology, E.Arnold, London 288-295, 1970). I would suggest that many dysphasic patients can make a will. However, knowledge of their problems and appropriate support and advice are required, along with an awareness that some people will not be in a position to be fully involved in this level of activity.

Reference:

The term “aphasia” is often used interchangeably with the term “dysphasia”. Aphasia, when used precisely, would indicate an inability to use language, spoken or written, either from a receptive perspective or when applied to indicate problems of greater or lesser extent in the area of language usage

Professor Pam Enderby can be contacted by telephone on 0114 2715897 or by e-mail at: p.m.enderby@sheffield.ac.uk