The goals of occupational therapy are as follows:
- to try to maintain as much of the independence and self-esteem of the patient as possible, with or without aids;
- to make the burden of care as bearable as possible for the patient’s surroundings;
- to provide information about the progress of the disease to the patient and his surroundings.
Beginning of treatment
The treatment will begin as soon as the patient has registered with a physiotherapist. The first meeting will often take place within the home environment of the patient in order to obtain a comprehensive picture of the patient, his home environment, his partner and/or caregivers. An assessment is made of the level of the patient’s abilities as well as the problems and wishes of both the patient and his surroundings. This assessment and further observation of daily activities will determine the choice of aids.
In making an informed choice, the following considerations are of the utmost importance:
- the degree and manner of the patient’s acceptance of the disease. The psychological and physical strength of the partner plays an important role as well in the choice of aids;
- the wishes of the patient and his partner in regard to the following:
► preference towards home care
► changes to the living situation
► choice of activities
► ambulatory care
► involvement of outside help
Some patients with fewer aids will achieve a similar quality of life as others with more aids;
- progression and stage the disease: every aid should be assessed by its usefulness in the future, due to lengthy application procedures;
- anthropometric sizes: body size and weight of both patient and caregiver are important in providing advice on aids;
- the patient’ social situation: when care can not be provided for during the day or at night, a more extensive aid package is generally needed;
- financial situation: patients with a diagnosis up to 65 years can apply for aids on loan through regional funds. Patients with a diagnosis past 65 years can only apply for financial aid through NIHDI;
- accessibility to occupational therapy: the situation at home should be regularly assessed for (new) problems. Since it can be difficult for a patient to reach their occupational therapist, it is common to opt for home visits;
- the level of cooperation of local councils regarding an adaptation of the home or a move also plays part in quickly completing the procedure;
- the level of cooperation of financial institutions. Providers of health insurance do not have a clear policy on what can or should be provided;
- the commitment of suppliers of assistive equipment: because of the rapid deterioration of the patient’s condition, adaptations to the aids already in place are often needed. These preferably take place in the patient’s home, since he is dependent on these aids. Know that ALS Liga can always provide you with quick and free equipment loan services;
- consultation options with the attending physician: regular check-ups and a clear policy improve the quality of care;
- contacts with frontline workers, such as GP’s and home care providers, in order to maintain the same care plan at home as in hospital, and to detect and address problems in time.
The most important areas for an occupational therapist
Below we highlight some of the areas an occupational therapist works on with their ALS patients.
One of the most important aspects is to determine how an ALS patient can continue his daily routine without help. Instead of offering a whole range of aids, it is better to try and change the patient’s techniques or certain other things in his current living situation.
Firstly, there is the choice of clothing. The size of the buttons, clothing without buttons, clothing which can be put on or taken off without undoing the buttons, the use of velcro, the use of elastic thread to sew on buttons, etc.
When an ALS patient encounters problems with daily tasks, it is important to look for a different method. When he grows tired while shaving, for example, he can use a chair that supports his elbows, so that he can shave without tiring himself. The same applies to brushing his teeth or cutting up food.
It is important that the occupational therapist can find a balance between the things the patient in question wants to keep doing independently and the energy left over for more enjoyable things, so that there is time left to spent with family and friends.
As for the living situation, the future needs of the patient need to be considered. What has to change to provide for future needs? Which options are possible inside the house? Are house renovations necessary?
Wheelchair access especially needs to be considered, even if the patient is still able to walk at the moment. Other considerations are the amount of steps, the type of hallways, bathroom and toilet facilities, the width of doorways, the location of the shower and the bedroom. It is up to the family in question to determine how far they want to go. If, for example, the bedroom is located upstairs, is it possible to convert a space downstairs into a bedroom? If the toilet is inaccessible, might a commode be an option? Some people even decide to move.
Sometimes it is impossible for some families to consider these options or required adjustments. This will of course cause additional difficulties when the patient’s accessibility becomes a problem.
Aids and equipment
Since every person has different physical abilities and a different way of life, there exists no standard set of aids and equipment. Moreover, the way in which a patient continues to perform tasks is constantly changing. Certain aids are therefore only efficient for a brief period of time.
It is best to avoid constantly employing new aids that will only temporarily help the patient. There is also the psychological aspect, with which the patient needs to reconcile from the moment the diagnosis was made. It often occurs that a patient is emotionally ready at a different time to accept aids than his family. Even though the patient encounters many difficulties while showering and finds it too exhausting, he still might not be ready to accept a shower chair.
Since the patient’s abilities are constantly changing, the occupational therapist must continue re-examining the required adjustments. This could mean that the keyboard or the mouse needs to be repositioned or that other small aids need to be introduced.
As it is already well known, technology offers ever more possibilities to help people with a disability. It ranges from simple call systems to more complex things like computer control systems.
What the occupational therapist needs to know is whether the patient in question is interested in all that technology. Some patients just aren’t. Does this technology contribute something to the patient’s priorities? Can this technology be modified according to changing needs? Is it supported and is it affordable to the family?
The occupational therapist should keep an eye on whether these aids remain accessible, even if physical abilities change. This includes, for example, access to a computer, control of a wheelchair, or the remote controls for TV or VCR.
An occupational therapist with experience in this field will examine all this, as well as all possible technological options.
- The physical characteristics of control units can be changed, for example by using thermoplastic materials to modify joysticks or wheelchairs, in order to keep the hand in control over the joystick. If someone is unable to use his hands, then there are plenty of other options available.
- Hoists exist for the arms and for the position of the keyboard. A control system for the keyboard is also an option.
- A scanning display will allow for the use of a switch to control a computer, type or even use the Internet with a single muscle movement.
As discussed, there are many options to keep using computers and to control the surroundings. These include simple page-turning devices, as well as different types of remote control. There is also a wide variety of wheelchairs available. It will also be possible to control some of the communication devices.
These aids are also made by occupational therapists. The occupational therapist will examine a patient to assess whether a splint will benefit that patient. The purpose of the splint will determine which type and which material should be used. One of the reasons to use a splint is to improve arm or hand function, by giving support to compensate for muscle weakness. This could be, for example, to keep the thumb or the wrist joint in place or to control the positions of the fingers.
A splint can also be used to offer more comfort. Some patients retain a small amount of muscle tension, which causes them to awake with tired and sore hands. They can benefit from the use of a splint that keeps the fingers straight and a bit more spread out.
Another reason for using splints is to allow patients to continue using a computer. This requires a specific splint.
These are just a few examples of possible splints.
Posture, comfort and relaxation
Occupational therapists also deal with problems concerning posture and comfort. Most occupational therapists will provide custom-made pillows that can help with a specific posture problem. They also discuss and develop energy-saving strategies to help the patient maintain his daily routine, so he is able to continue working or to be included in relaxing activities.
Relaxation training can also be provided. People who suffer from anxieties have benefited from attending relaxation training. It can lower muscle tension in people who experience acute anxiety, as well as help with interrupted sleep patterns or just simply make one feel better.