The visiting care searvice for people with severe PWD is a service that goes to the homes of people with severe physical, intellectual, or mental disabilities to provide assistance. The difference from in-home care is that it includes support during hospitalization(only grade 6). The service is available to persons with disability support category 4 or higher and who meet certain conditions (*). Support includes physical care such as eating, bathing, and eliminating; assistance with household chores such as cooking, laundry, and cleaning; consultation and advice regarding daily living; and accompaniment to the hospital.
Considering Care by Disability Type
Amyotrophic Lateral Sclerosis (ALS)
Main symptoms of ALS
Muscle weakness ・ Stiffness of limbs
Muscle atrophy ・Difficulty in swallowing
Tongue paralysis
Dysarthria (difficulty in articulation and inability to speak clearly)
In addition to these disorders, there are other disorders such as laughing or angry facial expressions regardless of emotion, such as at the slightest provocation. In addition to these disorders, dementia, such as the inability to understand the meaning of words, may also occur. Weight loss may occur due to muscle weakness and inability to move and eat properly.
About 1 to 2.5 people per 100,000 population are affected by this disease.
The disease progresses after the onset of symptoms, but the disease progresses at a rapid rate.
Without the use of a ventilator, death occurs on average 2 to 5 years after onset.
Depending on the type of onset of the disease, there are cases of survival of more than 20 years from the onset of the disease without the use of a ventilator. The disease varies widely from person to person in terms of symptoms and disease progression.
Because the disease is currently undergoing research, there are a variety of therapies, including rehabilitation and other coping therapies, drugs to slow the progression of the disease, and
It is possible to slow the progression of the disease by reducing functional decline through the use of ventilators and other devices in cases where symptoms have progressed.
ALS Treatment is to Slow Progression and Relieve Pain and Suffering
~ ALS Care
There is currently no fundamental treatment for ALS. In addition to drug treatment to slow the progression of symptoms, rehabilitation to relieve pain and distress, and treatment for breathing and eating are provided.
•Drug therapy
Medications such as Riluzole (oral medication), which protects nerve cells, and Elavon (intravenous infusion), which removes substances that cause nerve cell destruction, are used. Both are effective in extending the survival period of ALS patients and the time until they can be fitted with a ventilator by several months.
∙ Rehabilitation
Not moving the body causes further muscle weakness and makes it difficult to move joints. Rehabilitation can help prevent pain. In addition, training is provided to maintain the muscles used in swallowing food and breathing.
•About Breathing
As it becomes difficult to expectorate on one’s own, a machine is used to remove phlegm several times every few hours. When breathing becomes difficult, an artificial respirator is used. At first, a mask-type respirator is used mainly while the patient is sleeping. As symptoms progress, a tracheotomy is performed to insert the ventilator tube directly into the trachea through the throat. Modern ventilators are small and can be worn at home or even out of the house.
There are five key points for family care at home: “support for meals,” “support for breathing,” “support for communication,” “deciding on a treatment plan,” and “considering a nursing home.
•Dietary support
If the patient has difficulty eating by mouth, surgery is performed to create a gastric tube to inject food directly into the stomach. High-calorie diets to reduce weight loss will help control muscle weakness.
To prevent aspiration (aspiration), the patient should stand up when eating and maintain this posture for a while after eating. Bites should be small and prepared with moist, smooth foods such as pureed fruit or bread soaked in milk. Add a thickener (thickening agent), available at pharmacies, to thicken soups.
•Respiratory support
Suction to remove phlegm using an aspirator, and operation and management of ventilator.
•Communication support
The brain’s commands to produce voice are not properly transmitted to the throat and tongue, making it difficult for the patient to speak, or a tracheotomy may result in loss of voice. For this reason, we use communication boards with illustrations and 50 syllables written on them and ICT equipment to communicate with fingers and eye contact.
Muscular dystrophy
Muscular dystrophy is an inherited muscular disorder characterized by chronic repetition of muscle necrosis and regeneration.
The chronic repetition of muscle necrosis and regeneration leads to
This chronic cycle of muscle necrosis and regeneration leads to muscle atrophy and fibrosis, resulting in muscle weakness and impaired motor function.
There is no cure for muscular dystrophy, and symptomatic treatment is the mainstay of treatment.
Symptoms of Muscular Dystrophy
Muscular dystrophy is a disease that causes progressive loss of muscle strength and impaired motor function. In particular, weakness of skeletal muscles is the main symptom.
The following symptoms occur when skeletal muscles lose strength.
・Decreased motor function, such as gait disturbance
・Joint contractures and deformities
・Loss of mastication and swallowing function
・Loss of muscle strength in facial muscles
As muscular dystrophy progresses, not only skeletal muscles but also cardiac and smooth muscles become weak, resulting in complications such as cardiac and gastrointestinal disorders. Complications such as developmental and intellectual disabilities, epilepsy, ocular symptoms, and tumors may also occur.
Treatment of Muscular Dystrophy is to slow progression and relieve pain and suffering
~ Care for Muscular Dystrophy
It is fundamental to examine the body’s functions and complications on a regular basis, and to take measures to anticipate future disabilities that may arise. Although motor function and other dysfunctions and complications are characteristic of each disease, they do not necessarily occur in a fixed order. It is advisable to see a neurologist or pediatric neurologist who specializes in muscular dystrophy, as well as other necessary departments, to ensure early detection and early response.
About Rehabilitation
Muscular dystrophy can be rehabilitated to maintain health, range of activities, and quality of life (QOL). In particular, it is important to maintain range of motion of joints and clean lungs.
-Joint range of motion training: Prevention of contractures and deformities
-Fall and accident prevention measures: prevention of injuries and fractures
-Orthotics and (electric) wheelchair prescriptions: maintaining and expanding the range of living
-Respiratory physiotherapy: Keep lungs soft and clean
-Ingestion and swallowing training: Prevention of aspiration pneumonia, maintenance of oral intake (quality of life)
-IT training, etc.: Support for social participation
About Eating
With muscular dystrophy, the ability to chew (mastication) and swallow (swallowing) also declines. It is important to ensure that the patient is in an appropriate and stable posture during mealtime. Match the hardness and size of the food to the swallowing function. Many patients complain that changing the food form reduces the enjoyment of eating due to the lack of texture variation. Try to add changes in taste, temperature, color, shape, and smell. When it becomes difficult for a patient to safely receive adequate nutrition by mouth, a gastrostomy is often used as a safe method of nutritional intake. Gastrostomy is a method of administering nutrition through a small hole drilled in the abdomen and a tube passed through the stomach, often using a gastroscope.
Breathing
Patients with muscular dystrophy have reduced motor function, which makes it more difficult to recognize the decline in respiratory function. For this reason, it is important to monitor respiratory function through periodic examinations and introduce the necessary measures at the appropriate time. In muscular dystrophy, respiratory failure occurs as a result of weakening of the respiratory muscles. When respiratory failure occurs, oxygen is administered and eventually a tracheostomy is performed and a ventilator is placed.
Cerebral Palsy
Cerebral palsy is not a disease.
It is an aftereffect of damage to a part of the brain caused by some cause (prematurity, suspended animation, etc.) before or after birth. The brain is responsible for issuing commands to move limbs (motor nerves), hear sounds with the ears, see light with the eyes, and feel pain or cold with the skin (sensory nerves). They also remember, recall, grieve, and think (higher nerves). Therefore, depending on the location of the wound, there are many different things we cannot do.
Main Symptoms of Cerebral Palsy
The symptoms of cerebral palsy are diverse, but the most common symptoms are as follows
•Hypertonia and rigidity of the muscles of the body (especially the hands and feet).
Sluggish and jerky movements.
∙ Involuntary movements (body movements against the will, sudden jumps, tremors, etc.).
∙ Trunk dysfunction (e.g., unstable posture or inability to hold posture).
∙ Upper limb impairment (e.g., excessive or insufficient arm strength or grip strength, decreased dexterity)
∙ Lower limb impairment (e.g., difficulty standing or walking).
∙ Speech impediment (inability to speak clearly).
∙ Swallowing and chewing disorders, apnea during sleep, etc.
■ Spasticity type
The disorder affects mainly the pyramidal tracts of the brain, resulting in rigidity of the muscles and a persistent, contracted state. It is characterized by the fact that visual impairment and strabismus are often associated with the disease.
-Hemiplegia = Disability appears on only one side of the body. The legs are not fully extended at the knees and hip joints, resulting in a spindly gait, and the arms are difficult to support with the palms of the hands.
Quadriplegia (biparesis) = Quadriplegia is characterized by a wide range of disability, from being able to walk unaided to not being able to sit up. Tetraplegia is also characterized by the inability to fully extend each joint, which can lead to joint contractures.
■Athetoid Type
The athetosis type is a disorder centered on the extrapyramidal tract of the brain and is characterized by involuntary movements. Involuntary movements make it difficult to regulate, coordinate, and control movement. Since involuntary movements are the main symptom, joint contractures are less likely to occur, and intellectual disability is not a common complication. However, involuntary movements of facial muscles often cause symptoms such as speech and language disorders, chewing and swallowing disorders, and drooling.
■ Ataxic type
Disorders of the neural pathways that regulate equilibrium in the cerebellum and cerebral cortex result in symptoms such as muscle weakness, tremors, difficulty with balance, and instability of movement. Another characteristic of the ataxic type is the lack of intonation and slow speech.
Stiff type (rigid-flexed type)
The rigidity type is characterized by a disorder of the pyramidal tract that causes muscle tension in both flexion and extension of the limbs. This causes muscle tension both when extending and bending the joints of the limbs, resulting in a cogwheel-like motion.
■Mixed type
The mixed type is a combination of two or more of the four types of cerebral palsy described so far, and most of the mixed types are a mixture of the spastic and athetotic types. In most cases, one of the mixed types is stronger than the other.
~ Care of Cerebral Palsy
About Eating
Patients with cerebral palsy are at risk of aspiration because they often have difficulty chewing and swallowing due to involuntary facial movements. When aspiration occurs, aspiration pneumonia can occur, which can be life-threatening, so care must be taken to prevent aspiration from occurring.
