Changes in communication can often be anticipated. Early changes in communica- tion should trigger preparation for the future and the involvement of a speech and language therapist. Acknowledging that communication is likely to get worse can
Table 3.2 Key tips in giving diagnosis Basic principles of discussing diagnosis
Invite the person to bring someone with them when they are getting test results Ensure a private room is available and free from distractions and interruptions Convey the diagnosis sensitively and at a pace that is manageable for the individual Allow time for crucial information to sink in
Avoid medical jargon
Keep checking that the individual understands what has been said. For example, ask open questions to gauge their level of understanding
Immediate support after diagnosis
Offer literature about their disease to read later Provide a follow-up contact number
Arrange a review appointment in the near future for further discussion Provide information about sources of condition speci fi c and general support Provide a quiet room or other similar facility, where they may rest before they leave Start dif fi cult discussions at or soon after diagnosis by exploring people’s attitudes and views
before decisions have to be made and any possible cognitive change has developed
be a dif fi cult discussion. Some patients and their family fi nd reassurance in knowing that help is available and being able to plan for their future. Early changes in speech are a prompt to explore end of life wishes with the patient, including consideration of an advanced directive or appointment of a lasting power of attorney. Early plan- ning in response to speech changes should also focus on developing practical cop- ing strategies.
The creation of a life storybook or other similar biographical record before com- munication becomes dif fi cult will be helpful to some people. These records can be a powerful tool for self-expression when other means of communication may be lost. A life storybook can encourage health-care staff to see beyond the illness and understand the person [ 8, 9 ]
When loss of speech is expected, patients should consider digitally recording their own voices. This might include words or phrases that could be incorporated in a communication device at a later date [ 10 ]
Coping with Speech Changes
Changes in speech due to dysarthria will commonly worsen over time in progressive neurological conditions. In some conditions, for example, motor neuron disease, the speed of change can be rapid. Understanding and anticipating speech changes can help the patient and family to adapt and successfully adopt coping strategies [ 11 ] . Methods to supplement or replace speech are known as augmentative and alterna- tive communication (AAC). These methods range from simple unaided techniques, such as signing and body language through to high technology using computers and speech-generating systems.
Involvement of a speech and language therapist is important in planning and implementing appropriate AAC. Ongoing assessment of the patient’s capability, including cognitive impairment, will guide choice of methods recommended.
Cognitive limitations are the primary reason for rejection of ACC technology [ 11 ] . Unaided forms of ACC include those which require no external tool and include simple methods such as facial expression, sign language, and gestures. These meth- ods can be part of our natural communication repertoire, are possible for most patients to use, and are easily understood by attentive listeners. A simple smile and nod can convey much in a conversation.
Harry’s story at the beginning of this chapter illustrates that at the very end of life, communication can be limited to communicating a simple “yes” or “no”
through a blink, squeeze, or other consistent means of signaling. The use of careful explanation and closed questions can allow important communication to continue despite profound disability.
Aided forms of ACC include use of external tools to aid communication and range from the simple to complex technological devices. Simple tools can include writing and communication boards. For some patients, with bulbar forms of MND, for example, writing with pen and paper is preferred as this allows quick and
unlimited expression. In the case of hypophonia, for example, in Parkinson’s dis- ease, the use of a simple voice ampli fi er can be helpful.
Communication boards can be an invaluable tool to aid communication. An alphabet board can be used for spelling out words. These boards can be used to supplement verbal communication in the spelling of words proving dif fi cult to say or hear. In cases of loss of speech, communication boards can be the main method of communication. Bespoke communication boards can be made to the individual’s needs and capability, for example, a board with frequent requests or a board with pictures of activities or emotions if a person may understand pictures better than words. Patients can indicate the required image through pointing or eye gaze, or they may indicate yes or no as the listener points at the images. Creating a bespoke communication board can be a means of imparting a sense of control back to the patient and respect for their need to express themselves.
See Fig. 3.1
Complex aided AAC tools include electronic speech-generating systems.
Commonly used devices in the UK are the Lightwriter ® , a keyboard system which will speak the text as typed, and the Apple iPad, or other tablet computers with speech production apps. The systems can be programmed with common phrases and can predict text as typed. In the case of people with progressive neurological conditions, these tools tend to be used by patients with good cognitive ability and dexterity. More sensitive electronic speech generation systems are available, includ- ing those which track eye movements to indicate a word or phrase.
See Fig. 3.2
W
Q E R T Y U I O P
X Z
AND YOU THE YES NO
C V B N M ? ! @
S
A D F G H J K L +
2
1 3 4 5 6 7 8 9 0
Fig 3.1 A simple communication board
Fig 3.2 A Lightwriter ® electronic speech generating system
To be successful in people with progressive neurological conditions, communi- cation aids or strategies need to be introduced early [ 12 ] . The use of a communica- tion device can restore the ability to communicate, and this has been shown to have a great effect on quality of life [ 13 ] . Advice can be given both to patients and carers which can help them to cope with the dysarthria (see Table 3.3 )
Communication: Coping with Cognitive Problems
Communication is our means of expression. The loss of language skills in cognitive impairment can coincide with the development of unusual behaviors and repeated confused ideas or questions. These can be a sign of a need to express something, sometimes real worries. The cornerstone of communication in cognitive changes is to understand the nature of these changes and to interpret nonverbal communication and changes in behavior.
Tension and con fl ict can develop when cognitive changes occur. It may be help- ful to explore cognitive changes openly with the patient and loved ones. Some reas- surance and relief may be found from understanding why changes have occurred.
I didn’t realise MS could affect my mind, I thought I was getting Alzheimer’s as well!
(Patient with MS and memory problems)
Open conversations about cognitive issues may not be acceptable or possible.
Such consultations can exacerbate con fl ict if a patient is unable to acknowledge there is a problem. Support for carers is vital to help their coping. This support should focus on understanding the nature of cognitive problems and advice on strat- egies to cope and aid communication (see Table 3.4 )
Carers of people with cognitive problems often report not knowing how to deal with dif fi cult cognitive issues affecting communication [ 14 ] . Finding the balance between confronting and colluding is an ongoing dilemma. In most cases, the bal- ance depends on the situation and context.
The repeat of a common confusion may give useful insight into real fears or worries
He keeps on and on about having to get to a conference and that he’s waiting for faxes to come through about tyres. I keep telling him he’s confused and he doesn’t need to worry about anything. (Wife of patient with advanced MS. Patient previously had a tire business) Table 3.3 Key tips for coping with dysarthria
Minimize background noise and distractions Establish clear signals for “yes” and “no”
Ask the person if there is anything important they would like to talk about Check that you have heard correctly “Can I just check that I’ve understood…”
Do not pretend you have understood
Avoiding rushing to assume what is being said Ask the person to spell out any dif fi cult words
Encourage the person to slow down and take breaths between words
Seek permission to include family members who may be more able to understand If understanding is not possible, then apologize and offer time to rest and to return later
Through discussion with this patient and his family, it became clear that he had a strong sense of his role as provider and he previously had a tight control over the tire business and household money. He was genuinely worried about their fi nancial security and felt impotent to in fl uence how their money was being managed. His family had felt it was kinder to tell him not to worry. This had the effect of increas- ing his anxiety and frustration when he was unable to clearly express his worries.
Time spent as a family going through bank statements and meeting with their accountant did help relieve some fears. The family no longer dismisses his con- cerns; they give time to repeat reassuring information about their fi nances, includ- ing a letter from their accountant. Although he still talks of attending to business, there is less anxiety, and he dwells less on the issue.