Which areas can brain damage affect?
After a stroke, a brain haemorrhage, a head injury or in the course of a progressive illness such as dementia, attention, memory, planning of actions and spatial perception can be disturbed, usually several of them at once. Neglect is a form of its own: one half of space and body is not attended to although eye and ear are intact.
These disorders are invisible. Everyone can see a paralysis; nobody can see a disturbance of divided attention. That is how people affected come to be thought unreliable or changed in character, when what is at work is a consequence of the brain damage.
- Attention: staying awake, staying with one thing, screening out distraction, keeping two things in view, switching between tasks.
- Memory: what is usually affected is the learning of new things, while memories from long ago stay intact.
- Planning of actions: breaking a task into steps, holding the order, checking along the way, correcting after a mistake.
- Spatial perception: judging distances, finding your way in flat and neighbourhood, turning clothes the right way round.
- Neglect: one side is not attended to. The plate is eaten half empty, the shoulder bumps into the door frame.
The commonest are disorders of memory, attention and control of action. Which sub-function is affected is shown by an examination with test procedures, not by the clinical impression: even experienced professionals regularly misjudge attention in conversation.
Why is attention usually treated first?
Attention is a basic function needed for almost every practical or mental activity. Someone who cannot take anything in remembers nothing, and someone who cannot stay with a task will not carry a sequence of actions through. Studies also show that people with better attention gain more from memory training.
Attention is not a single switch. At least alertness, staying with something for longer, spatial orientation, screening out distraction and dividing attention between several things are distinguished. Someone who cannot stay with a task needs different exercises from someone who can no longer screen out the noise in a restaurant.
From this follows a rule that the guideline on attention disorders states explicitly: treatment has to be tailored to the particular deficit. A programme that is too complex overwhelms, one that is too easy bores, and both damage motivation more than the exercise helps, which is why an examination comes first.
The second factor is stamina. Many people are reasonably together in the morning and no longer from the early afternoon. This premature mental tiring is a matter of attention, not of laziness, and it decides when practice happens and when a break does. In multiple sclerosis it is so prominent that it is treated in its own right: see the article on fatigue in multiple sclerosis.
What is the difference between restoring and compensating?
Restoring means practising the disturbed function itself so that it improves. Compensating means solving the task by another route, for instance with notes, fixed routines or an alarm. As a rule the two run side by side, and the weighting follows the severity of the disorder.
In mild and moderate disorders, practising the function itself has its place. For function-oriented or strategy-oriented memory training the guideline on memory disorders gives the strongest grade of recommendation, and at least ten sessions count as good practice. The condition is that something sticks, otherwise practice cannot work.
With a severe memory disorder the picture reverses. There the proof of effectiveness is missing, and the same guideline makes no recommendation for function-oriented training. The emphasis then lies on compensation, meaning routines that stay the same and aids that reliably remind.
How the instruction is given decides a great deal. You do not let someone guess; you give the correct step immediately so that no mistake is learned, and then ask again at first short and later longer intervals. Everyday routines can be learned that way even when conscious recall barely works any more.
Compensation is sometimes taken as an admission of defeat. Yet anyone who writes a shopping list has no worse a memory than before; the shopping simply gets done, and that is what counts.
Does brain training on the computer really achieve anything?
It produces better scores in the exercises practised, and that is well evidenced. Thinner evidence supports the benefit in daily life; the transfer from the screen into a real action is harder to demonstrate than the progress within the exercise itself. Strategy and everyday training is therefore better evidenced.
The figures behind this are plainer than many would like. The Cochrane review of attention disorders after stroke summarises six studies with 223 participants: no convincing evidence of effects on everyday ability, mood or quality of life. The review of memory disorders with 13 studies and 514 participants finds a short-term improvement in what people report about their memory, but none in the tests and no effect on independence.
A more recent meta-analysis summarised more than twenty randomised studies of people after stroke and asked specifically about daily life. Training aimed at restoring individual thinking functions improved neither washing and dressing nor shopping, cooking and finances. For executive disorders the Cochrane review with 19 studies reaches no generalisable conclusion.
Computer-assisted training is nevertheless recommended for mild to moderate attention disorders. It can be graded finely and delivers comparable scores across the weeks. With severe impairment, paper and pencil are often better, because breaks and explanations can be built in more flexibly. Either only works through the instruction, meaning matched difficulty and feedback about performance.
For crosswords, sudoku and puzzle games the same applies in a sharper form. That they improve everyday performance after brain damage has not been shown.
What does everyday training in occupational therapy mean?
Everyday training means practising the activity itself, at the place where it happens. Not sorting rows of numbers, but preparing breakfast or using the ticket machine. The way from the worksheet into daily life falls away, because daily life is the exercise. For this approach, unlike pure function training, there are indications of a benefit in daily life.
The second building block is strategy training. What is practised is not the function but the handling of its failure, for instance breaking the task into steps beforehand and checking at the end. The guideline on attention disorders explicitly recommends combining function-oriented practice with this part, because everyday activities can be improved that way; that is the difference from practising at the screen alone.
There is a delicate point here. Many people underestimate their own restriction, especially with neglect. As long as someone is convinced that everything works as before, no strategy takes hold. The first part of treatment then consists of making the gap visible at a real task.
- Set a goal that really means something to the person, for instance shopping alone or preparing the medication themselves.
- Observe the activity and write down exactly where it tips over.
- Change the conditions: less noise and a visible order of steps.
- Practise the strategy until it runs without a reminder from outside.
- Make the task harder until it matches the real demand.
Because the place practises along with you, part of the treatment sensibly takes place at home: see the article on occupational therapy at home. Where arm and hand are concerned as well, the approach from After a stroke reaches into the cognitive part, because arm training without attention for the affected side loses much of its effect.
Which aids and which structure help in daily life?
One single calendar for everything, alarms and reminders for appointments and medication, checklists for recurring routines and fixed places for keys and glasses. For electronic reminder aids the memory guideline gives the strongest grade of recommendation, whatever the severity. The condition is that the person is willing to use the aid.
That is worth noting: the clearest recommendation in the guideline on memory disorders applies to the aid and only after that to the training. Where reminder aids are used, the reliability with which the intended thing actually gets done rises markedly. This effect is practical rather than curative, because it changes nothing about the memory, but a great deal about the course of the week.
- One calendar, not three. Everything goes into it, at once and always, including what you are sure you will not forget.
- An alarm or a reminder on the telephone for everything that has to happen at a particular time.
- Checklists for recurring routines: leaving the flat, preparing the medication.
- Fixed places for the things that are searched for daily. One place per object, without exception.
- Fewer distractions where concentrated work happens: radio off and only one task on the table.
- Go in twos to conversations with your doctor, the insurer and the authorities, and take notes.
Whether the aid is electronic or made of paper is secondary. A randomised study compared an electronic calendar with paper-and-pencil aids and found no difference in reaching personal goals. What is decisive is that the thing gets used.
The last point is regularly skipped. Owning a telephone does not mean being able to operate it as a memory aid; in one survey only a small proportion of those affected had been spoken to about it in therapy at all. Setting reminders and reacting to them is itself an exercise. For practice in between there are worksheets on concentration and logical thinking.
What can families contribute?
Families shape the conditions under which thinking succeeds or fails. They provide quiet for a conversation, one thing at a time, routines that stay the same, and they see to it that the calendar really gets used. Testing and correcting do not belong to that: they do not bring the memory back.
- One piece of information at a time, in short sentences, and ask what has arrived.
- Switch off background noise before anything important is discussed. Television and radio cost more capacity than you would credit them with.
- Do not test whether something is still known. If an answer is missing, give it and ask again calmly later.
- With neglect, deliberately speak from the neglected side instead of moving everything to the convenient side.
- Allow time. Slowing is a common consequence after a head injury, and pressing makes it worse.
- Take your own burden seriously and arrange relief early.
Often it is the family who prompt the assessment, because the change is clearer to see from outside. That observation belongs in the consulting room, meaning what concretely goes wrong in daily life and how often.
Where hemiplegia is present as well, the topics connect. The article on everyday life with hemiplegia describes the practical approach. If the memory disorder is not the consequence of a single event but increases gradually, a different approach applies; see the article on dementia at home.
How long is recovery still possible?
Most of the spontaneous recovery falls in the first months. After that it does not stop. In the review in the guideline on attention disorders, most of the studies with a demonstrated treatment effect treated people in the chronic phase, meaning more than a year after the event, so a late start is worthwhile too.
Rehabilitation divides the time afterwards into stages: the first four weeks count as the acute phase, the first to fourth month as the early post-acute, the fifth to twelfth month as the late post-acute and everything beyond that as the chronic phase. This division comes from neurological rehabilitation after a single event, such as a stroke or a head injury. In other fields the chronic phase is set as early as about three months, and in progressive illnesses the scheme does not fit at all: there the therapy follows the course and not the calendar.
In the early phase, with mild to moderate impairment, practice can be frequent, meaning several times a week. Later the frequency drops to one or two appointments, and at least ten sessions of 30 to 60 minutes count as a sensible volume. Occasional refreshers help to hold what has been gained.
Registering needs a doctor’s prescription; the treatment runs through the insurer responsible, and after an accident usually through accident insurance. On the deductible (Franchise) and the retention fee (Selbstbehalt), the insurer responsible gives information. How a prescription comes about is described in the article on a doctor’s prescription for occupational therapy; what is treated in our speciality in neurology is set out there.