Home care tips for families with Parkinson's patients on World Parkinson's Day

Produced by: Science Popularization China

Author: Mai Bo

Producer: Guangdong Science and Technology Association

At six in the morning, Aunt Li was once again startled awake by her husband, Old Zhang's, groans. 68-year-old Old Zhang had been suffering from Parkinson's disease for eight years, and in the past year, his condition had deteriorated sharply, making movement increasingly difficult. As his sole caregiver, Aunt Li expended most of her energy each day just helping Old Zhang turn over, dress, and eat. However, that morning, when she was assisting him to the bathroom, Old Zhang suddenly became so rigid that he could not move, and they both fell beside the bed—Aunt Li scraped her arm, and Old Zhang hit his head against the edge of the cabinet. After an emergency examination, he was diagnosed with a left femoral neck fracture and would require surgery. In the emergency room, Aunt Li, with red-rimmed eyes, repeatedly murmured, “I really don’t know how to take care of him…”

This is not an isolated case. According to statistics, the number of patients with Parkinson's disease in our country has exceeded 5 million, and the vast majority choose to receive care at home. However, many families, like Aunt Li, suffer because they lack scientific methods, leading to additional suffering for the patients and both physical and mental exhaustion for themselves. Associate Professor Pan Qi from the Neurosurgery Department of Sun Yat-sen University's Sun Yat-sen Memorial Hospital explains that home care for Parkinson's disease patients should focus on several key points to help caregivers avoid unnecessary pitfalls and enable patients to live a higher quality of life.

Medication management must be precise and timely.

The most commonly used medication for Parkinson's patients is levodopa preparations, and the timing of medication intake directly affects its efficacy, so adjustments should not be made casually. In clinical practice, many patients change their medication schedule on their own, which leads to diminished effectiveness and exacerbation of the "on-off" phenomenon. It is recommended that family members help patients set alarms on their mobile phones to ensure medication is taken strictly on time.

It is also important to pay attention to medication details: High-protein foods can affect the absorption of levodopa preparations, so it should be taken one hour before meals or one and a half hours after meals; Safinamide should be taken in the evening to avoid insomnia; Entacapone must be taken in combination with levodopa, as it is ineffective when taken alone; Amantadine should be taken before 4 PM, otherwise it may affect sleep.

Transforming the home environment to prevent falls.

Patients like Old Zhang, who experience muscle stiffness and balance disorders, are at a significantly higher risk of falling. Therefore, home care should focus on several modifications to the living environment: installing grab bars in the bathroom and placing non-slip mats, as well as a raised toilet seat next to the toilet; removing small rugs, thresholds, and any clutter from the floor to prevent tripping; installing sensor night lights in the bedroom and hallway for easier nighttime movement; ensuring the bed height allows the patient to have their feet flat on the ground when sitting at the edge; and adding guardrails or handrails beside the bed, along with bumper strips on furniture edges.

Caregivers should also learn the correct techniques for assistance: stand beside the patient, have the patient hold onto their shoulder with one hand, and use one arm to embrace the patient's waist. Use leg strength rather than back strength to help the patient shift, thereby avoiding another fall.

Eating and defecating are the "two major challenges."

Patients with Parkinson's disease often experience difficulties in swallowing due to muscle stiffness, and they may also suffer from persistent constipation caused by slowed intestinal movement. When eating, it's important for the patient to maintain an upright posture with their chin slightly tucked, avoiding tilting their head back while swallowing. The amount of food per bite should be limited to less than half a spoon, and wait until the previous bite is completely swallowed before offering the next one. The food should preferably have a mushy or soft consistency, avoiding thin liquids (such as clear broth or diluted porridge) and hard, dry foods (like crackers or nuts). If coughing, a change in voice, or difficulty breathing occurs during eating, immediately stop feeding and seek medical evaluation if necessary to determine if a feeding tube is needed.

For constipation, after waking up in the morning, drink a cup of warm water on an empty stomach and gently massage the abdomen in a clockwise direction. Family members can incorporate natural laxative foods such as prune puree, red-fleshed dragon fruit, and oatmeal into the patient's diet. If necessary, mild laxatives should be used under the guidance of a doctor.

Psychological care and functional rehabilitation are equally important.

Many Parkinson's patients may experience depression, anxiety, and even hallucinations. Caregivers should keep in mind not to argue, deny, or blame. For instance, if a patient firmly believes that someone has stolen their belongings, instead of saying, "No one stole anything, you must be mistaken," it is better to respond with, "Really? Let's take a look; it must be somewhere." Additionally, the mental adjustment of the caregiver is equally important—Aunt Li's breakdown highlights the need for caregivers to have regular "respite." It is advised to seek help from community daycare centers and to give oneself at least half a day of rest each week.

For the physiological functions of patients, passive activities and active exercises can delay functional decline. It is recommended to assist patients with passive activities such as shoulder joint external rotation, wrist joint flexion and extension, and ankle joint dorsiflexion twice daily, once in the morning and once in the evening, ensuring that each joint is moved to its limit without causing pain. Patients should be encouraged to read aloud to practice speech clarity, using a metronome to assist with pacing for starting and walking. Provided that safety is ensured, a certain amount of outdoor activities and physical exercise should be maintained, such as walking and practicing Tai Chi.

It is important to remind patients who have undergone deep brain stimulation surgery to follow medical advice for rehabilitation. Older models of brain stimulators have higher demands for patients' daily lives, and they should avoid close proximity to items that produce magnetic fields, such as microwaves, televisions, and security gates. Currently, newer models of brain stimulators have little to no impact on patients' daily lives. However, after deep brain stimulation surgery, it is not recommended for patients to engage in intense activities such as basketball or badminton that involve pulling. Patients can participate in lighter exercises like jogging or practicing Tai Chi.

Content from: Guangdong Provincial Association for Science and Technology

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