7 Tips to communicate with someone with a neurodegenerative disorder


Photo by Hal Gatewood on Unsplash


So the first question that is probably running through your mind is: What the heck is a neurodegenerative disorder?


A neurodegenerative disorder is a disease in which the cells of the central nervous system stop working or die. Neurodegenerative disorders usually get worse over time and have no cure. They may be genetic or be caused by a tumour or stroke. Neurodegenerative disorders also occur in people who drink large amounts of alcohol or are exposed to certain viruses or toxins.


Can you give me some examples?

There is a wide range of disorders that fall into this category, including commonly known conditions such as Motor Neurone Disease (ALS), Parkinson’s Disease and Alzheimer's Disease, and less well-known conditions such as Progressive Supranuclear Palsy, Progressive Primary Aphasia and Huntington’s disease. The common element is that the symptoms of the disorder worsen over time and cannot be reversed or cured.


How do neurodegenerative disorders affect communication?

Each neurodegenerative disorder has its own progression and set of symptoms. However, there are some common communication impairments that are seen across many of these disorders including:

  • Dysarthria - when the muscles used for speech are weak or you have trouble controlling them

  • Dyspraxia - a motor-planning disorder that affects your ability to plan, organise and execute the muscles required for the necessary sequences for clear speech

  • Aphasia - when the language centres of the brain are impaired affecting language comprehension or language expression

  • Reading and writing impairment

  • Swallowing disorders arise when the muscles involved in swallowing are weak or they cannot be organised and activated appropriately for safe swallowing


What does speech pathology do for people with neurodegenerative disorders?

There are a number of ways in which speech pathology can support people with a diagnosis of a neurodegenerative disorder. Our main goals involve:

  1. Careful assessment of communication function

  2. Strategies and interventions to maintain function

  3. Involve communication partners in this journey

  4. Introduce AAC support as required

  5. Integrate AAC support to support functional communication

  6. Monitor swallowing function and provide appropriate recommendations


What is AAC?

AAC stands for Augmentative and Alternative Communication. This refers to any system used to support communication. It can be no-tech, such as sign language or writing on a whiteboard or paper, low tech such as a communication board or high tech which includes a wide variety of devices and apps.


When should someone who has been diagnosed with a neurodegenerative disorder see a speech pathologist?

As soon as they feel comfortable after their initial diagnosis. An early assessment will provide the client with peace of mind about their options for support. Relevant therapies can be implemented and a plan to manage their ongoing communication needs can be discussed and developed.


7 Tips for communicating with someone who has a neurodegenerative disorder


1. Focus

Give the person your full attention.


2. Position yourself for communication

Stand or sit in front of the person, and maintain eye contact. Remember it can be

difficult for someone with a neurodegenerative disorder to talk while they are

doing something else, such as walking.


3. Consider where you are

Group settings are often harder or overwhelming for people with communication

disorders. Conversations that require a concentrated effort are best had in a quiet

environment. One-to-one conversations are more manageable.


4. Keep it simple

When the person is tired, overwhelmed or their cognition is impaired, be sure to

keep your communication simple. Asking ‘yes’ or ‘no’ questions and avoiding

complicated sentences is the best approach. Make sure that you use the names of

people you are talking about to clarify the conversation and make it clear when

you change topics.


5. Consider your timing


People with neurodegenerative disorders are often on a cocktail of medications to

manage their disease. These medications can affect energy levels, alertness and

cognitive engagement. Time your conversations to make the most of their ‘best

times’.


6. Be patient


Give the person time to communicate and avoid finishing their sentences. Often

finding the right words is a challenge for a person with a neurodegenerative

disorder so give them the time they need to say what they want to say.

Interrupting or talking for them can really raise their level of frustration.


7. Use Tools


Talk to their speech pathologist about the best systems and supports that will

ease the strain of communication. It might be something as simple as an

amplification system that will help them speak louder, or a no-tech or low tech

AAC system.

Don’t go it Alone

Supporting someone with a neurodegenerative disorder is a tough journey. Communication challenges can make you both feel isolated. We’re here to help.


Alison McDonald, Certified Practising Speech Pathologist, Director of NSP





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