Caregiver Corner: When Communicating With Your Loved One Is Threatened by Parkinson’s Disease

Communication is a vital way we connect, build and maintain relationships. It is scary when your loved one begins to have communication issues due to Parkinson’s disease (PD) that may threaten your bond. The good thing is it doesn’t have to be that way.

Reviewing some cognitive and communication changes that someone with PD may experience as the disease progresses, your loved one might:

  • Have difficulty concentrating or expressing thoughts in a timely manner
  • Have difficulty finding the “right” words
  • Have difficulty following a conversation with numerous people in a room talking 
  • Have forgetfulness and difficulty with retrieval of learned information
  • Have embarrassment with motor changes that are prohibiting them from forming words

Understanding some of those common changes is a start. From there, we as the caregivers must be mindful of our communication style and adjust as our loved one’s PD progresses.

The key to effective communication is the ability to listen. As a caregiver, you must use techniques that provide an open non-threatening environment. Your listening behavior can either enhance and encourage communication or shut it down.  Communication is the Second Pillar of Activities and Engagement, the ability to listen effectively is the foundation of that pillar.

There are two types of communication: verbal communication and non-verbal communication.

Verbal communication - Here are some basic tips for success:

  • Use exact, short positive phrases. If you have to repeat an instruction, say it the exact way you did the first time. If your message doesn’t get through after two attempts, add in tips from the non-verbal communication section below.
  • Speak slowly and give your loved one time to answer.
  • Give one instruction at a time.
  • Use a warm, gentle tone of voice but talk to them as the adult they are.
  • Use words and phrases your loved one is familiar with.
  • When there are several people in the room, address your loved one by name so there is no confusion as to whom you are talking to.

Non-verbal communication. It may seem that most communication happens verbally, but research has shown that most communication occurs nonverbally. Five key elements to consider:

  • Facial Expressions – Be aware of what your facial expressions are conveying.
  • Eye Contact – Ensure that you have made eye contact with your loved one and that their attention is focused on you and what you are saying. Always approach your loved one from the front before speaking to them.
  • Gestures and Touch – Calmly use non-verbal signs such as pointing, waving and other gestures in combination with your words. Give non-verbal praises such as smiles and head nods when appropriate.
  • Tone of Voice – The inflection in your voice helps your loved one relate to what you are saying.
  • Body Language – Be aware of the position of your hands and arms when talking to your loved one. Please note that when communicating with your loved one, their body language may not tell you how they feel or what they are trying to express because of rigidity or slow movement. Your body language, however, will be read by your loved one.

If you take one thing from this article, please remember to always remain calm and approach your loved one in a relaxed demeanor. With this open and non-threatening approach, your loved one will know that you are there to listen. Remember, listening is the foundation of the Second Pillar of Activities and Engagement - Effective Communication. 

Building on that foundation, you want to be flexible and guiding, but not controlling.  

If you need more information, please check our book designed for families of those with PD: Activities for the Family Caregiver: Parkinson’s Disease – How to Engage, How to Live

Dawn Worsley, ADC/MC/EDU, CDP, is the lead instructor for R.O.S. Therapy Systems and has been in the health care and activities field for over 25 years.  Scott Silknitter, inventor, author, and speaker, is the founder of R.O.S. Therapy Systems which began as a 2010 project to help his mother and father in a 25-year battle with Parkinson’s disease and dementia. 

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