How to Communicate with a Loved One with Parkinson's Disease?

Parkinson’s disease affects the individual’s ability to perform daily tasks and makes it harder for them to communicate effectively. This is why caring for a loved one who has Parkinson’s can be especially hard. So here’s a guide that you can turn to when the going gets tough.

Understanding the disease

Parkinson’s Disease is a chronic and progressive brain disorder that affects the coordination and balance of the human body – muscle control and movement are drastically impacted by the disease. In clinical terms, the disease is the degeneration of a particular part of the brain – the basal ganglia. Over a period of time, the neurons in the brain start to malfunction and eventually stop working altogether.

As the disease progresses, it affects movement and gait, and can lead to psychological symptoms such as paranoia or hallucinations. Regenerative Rehabilitation Therapy, Occupational Therapy, which comprises Stem Cell Therapy, Physical Therapy, and Speech Therapy is the recommended treatment for Parkinson’s.

How does it impact communication?

Words and actions are our most powerful tools of communication. For a patient of Parkinson’s these tools gradually decline in their functioning.

Many, for instance, may develop a soft hoarse voice that makes it difficult to hear what they are saying. Others may exhibit a stutter or a slur in their speech. As the disease progresses, or even as a consequence of medication, patients may experience hallucinations that can cause them to lose their train of thought. This may even be an obstacle in comprehending speech. Moreover, patients are often unable to make facial expressions, which can be perceived as disinterest in what is being said. This poses a further challenge in keeping the conversation going.

The other major challenge to communication is mental health. As many as 90% of patients experience depression, both as a symptom of the condition, and a result of the frustration of being chronically ill. This can make them withdraw emotionally, even with loved ones. Many patients also feel conscious about being sick and thus refuse to talk about their symptoms. This can be dangerous, especially if there is a decline in the patient’s health that the family should be aware of.

As caregivers, we only want to be able to help them. But how can we when we cannot understand what they are trying to say?

How to communicate effectively with a patient As someone emotionally close to the patient, it is important to keep the following points in mind when talking to them.

• Focus on the conversation: Patients may find it hard to talk to more than one person at a time or to talk while they are doing something else. To help them out, have a one-on-one conversation where both parties are sitting or standing, while maintaining eye contact.
• Observe the ideal time for conversing with the patient: Depending on what their medication schedule is, there may be various ‘on’ and ‘off’ times for them with regard to activities like conversations. Engage with them during their ‘on’ times as much as possible.
• Keep it simple: Make the comprehension process easy for the patient by using names rather than pronouns when talking about other people and keeping all questions simple.
• Offer them tools: If a spoken conversation is difficult for the patient, offer them a touchscreen tablet that they can use to type out what they want to say. You can also equip them with a small wearable microphone if their voice has softened.
• Avoid talking only about disease-related topics: Try not to fixate on the patient’s health or treatment. Instead, talk about things that they enjoy, such as books, music, or movies.
• Be patient: Patients may often struggle to find the right words, or to say something without stuttering. Let them take their time and avoid showing impatience or trying to finish their sentences for them. Remember, theirs is also a life of dignity and respectability.
• Take breaks when needed: If you are a caregiver to a Parkinson’s patient, it is important to take breaks to recharge your own mental health. By taking breaks you avoid the risk of burnout or revealing your frustration to the patient. You cannot pour from an empty cup. So keep your mental health a priority too.
• Consult a speech therapist: Speech therapists can work with the patient to improve their control over their mouth and tongue muscles to help them talk more easily. If your loved one’s speaking abilities show an unexpected decline, it may be time to enlist a therapist to help them out with appropriate exercises.

While it can be difficult to cope with a loved one’s impeded abilities and personality changes, it is essential to show empathy and patience above all else. Be attentive and listen actively if they express feelings of sadness or frustration. By simply showing that you care, you can maintain a strong bond and get them to open up to you in their own way.

A highly regarded neurologist and stem cell specialist, Dr Na’eem Sadiq studied neurology and clinical neurophysiology in London before working with some of England’s and the Middle East’s most prestigious medical institutions. He completed his MBBS