Building Stronger Caregiving Partnerships Through Better Communication

This article summarizes the 2018 Caregiver Summit | Cumbre Para Cuidadores presentation “Building Stronger Caregiving Partnerships Through Better Communication” by Angela Roberts, PhD, from Northwestern University.

Conversations are more than just the conveying of information. They are key to creating and maintaining relationships. They instill a sense of self and are critical as we establish and express our own self-identity.

As we age, communicating progressively requires more effort. Aside from common natural changes like hearing loss and cognitive changes, it can be even more challenging when one of the people interacting is living with Parkinson’s disease (PD). In fact, a person with Parkinson’s is more than a third more likely to experience a conversation breakdown due to symptoms specific to PD such as changes to speech, decreased facial expression, also called "facial masking", anxiety and isolation.

This can be hard on the person with Parkinson’s. Without intending to do so, they may feel withdrawn from social settings or like they are struggling to keep up with the conversation.

It can be equally as challenging for their care partner or friends and family. They may not recognize the person that they once found to be so engaging. They may feel that they are failing as a caregiver because they are unable to form connections that they used to consider basic.

It’s important to recognize that these breakdowns are neither participants fault. Successes and failures lie at the intersection between both parties according to Angela Roberts, PhD, who believes collaborative action can repair it.

Just how important is it to work on our communication skills?

Communication is important in all aspects of our lives whether in the context of getting out to a doctor’s appointment or of two people interacting in a more intimate setting.

Communications issues between loved ones can increase caregiver stress and lead to burnout. If the couple or family providing care is constantly frustrated when they speak to the person living with Parkinson’s, they are more likely to place their loved one in a long-term care facility. Alternatively, when communicating becomes easier, life becomes easier for all involved.

How will strengthening our ability to communicate translate to a stronger partnership?

Improving communication is a form a self-care. It will make care providing easier. It will restore the sense of who you are and help maintain relationships as partners instead of just caregivers. Before PD it may have been nice to talk more or communicate better. Now it is absolutely critical! And the payoff will be well worth it.

So how do we cope?

With practice! Dr. Roberts lays out some strategies that we can all try.

• Pick times of day to have specific conversations. When will you have the resources to have certain conversations? Consider medication times and times when the person with PD is more prone to feeling fatigue.
• Be aware of social cues and body language. Check for indications they may not have understood (disinterest, looking away, raised eyebrow, etc)
• Eliminate distractions. Turn off the TV. Sit face to face to make out mouth movement and voice loudness. Resist talking between rooms. They need to also see and hear you to understand what you’re trying to communicate.
• Remain calm. Don’t raise your voice. People may withdraw and become nervous with an elevated voice. Don’t give up and walk away. Stay engaged and be persistent. You will find what strategies work for you and what didn’t, and you’ll have made a connection which is far more important than the actual message you were initially intending to convey.
• Negotiate preferences ahead of time. Caregivers wanting to help tend to talk over or interrupt the person with PD. This often leads to unintentional negative effects. It can end up taking away from their identity and voice. It may make them feel like they are not wanted or valued. Don’t talk for a person with PD in a social setting before talking to them about it. ASK for permission to speak for them or fill in information.
• Provide additional time for a conversation. Present information in smaller chunks and listen patiently. Repeat and simplify if necessary. Rephrase with added information and familiar words. Watch for language complexity and use gestures to show what you mean.
• Acknowledge conversation difficulties. Verify that you understood the message. Discuss openly the type of help needed and how you’d like to give and receive it.
• Provide alerting cues. A discourse marker can be a touch on the shoulder or calling their attention by fitting their name into the next sentence. This will help acknowledge a change in topic or something you’d like to emphasize. This will help to avoid frustration that may come with having to repeat a message.
• Be careful of changing topics too quickly or bouncing around. See topic through, take time to process, pause and then change topic. Give person the opportunity to follow you.

It’s key to note that these strategies won’t immediately solve every encounter from here on out, and some might never work within your specific conversation breakdowns. All parties will need to be kind, diligent and intentional. Any signs of improvement can help restore who you are and the relationship you once had.

A message does not have to be perfect in order to foster meaningful conversation. Keep at it and if you have caregiving questions, contact our Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org.