Talking with Children and Teens

PSP, CBD and MSA change life for more than just the person with the diagnosis — including children, grandchildren, nieces, nephews and other young people. Children and teens may be affected by progressing symptoms, changed routines and uncertain future plans. 

Children who are kept well-informed about the health status of adults in their lives with a life-limiting diagnosis tend to cope better with the small and large losses associated with it. Without clear communication, they might experience anxiety, worry or fear. 

This page provides guidance and tips on how to talk to children and teens about the diagnosis, symptom management and what will happen in the future.

You can share the I Am a Child or Teen Wanting to Learn More webpage with the children and teens in your life to provide information on the diagnosis, symptom management and what they can expect.

Talking to Children and Teens

Educating the young people in your life about PSP, CBD or MSA will depend on their age, developmental stage and personality. These factors influence how they are able to understand the information you are giving them, and how they will react to it.

Just as important is your own acceptance of the diagnosis: you cannot properly support them if you yourself have not come to terms with it.

Click on these commonly asked questions to learn more about supporting the young people in your life:

Yes!

It is entirely natural to want to protect the young people in your life from the reality of the diagnosis. However, sharing timely, accurate, and age-appropriate information can help prepare them for disease progression, the end stages of the disease and eventually bereavement.

There is a lot of good research that tells us that children do best when they are kept up to date on a family member’s condition, even if it feels difficult.

How you talk about the diagnosis will depend on their relationship to the person with the diagnosis, their preferred communication style, age and how you have seen them work through difficult situations in the past. 

Oftentimes, people who have been diagnosed with PSP, CBD and MSA have had symptoms for many years. It can be helpful to start the discussion about a diagnosis by talking about how a diagnosis is the naming of a set of symptoms that already exist. 

Some helpful language to use when talking to them:    

  • It is a disease in the brain that changes over time.     
  • The disease affects physical movements and other ways the body works, which are called symptoms. 
  • There are a lot of changes that you can see, like changes in walking or with their voice. But sometimes they are changes you can’t see, like being in a sad mood or forgetting things.    
  • The disease is not contagious. You can’t get it from touching someone or being around them. 
  • There are different treatments to help with their symptoms, like medications.
  • There are also professionals called physical therapists, occupational therapists, and speech therapists that they can visit who will help them with some of the symptoms. 

Some tips to navigate this discussion:  

  • Be intentional about choosing a moment to tell the news. Ideally, choose a moment with limited distractions that offers them plenty of time to process after the discussion.  
  • Try to be both optimistic and realistic. It can be helpful to talk about symptom management options and possible future treatments. While there isn’t yet a cure for PSP, CBD and MSA, there is a lot of research being done to better understand these diseases.
  • Provide brief context of the disease and allow them to ask questions about it. Let them know that they can ask you any other questions at any time.

Receiving a life-limiting diagnosis will affect everyone in different ways. Some children might feel overwhelmed and start worrying about what’s ahead, others might feel angry and sad that this is happening to them and their loved one and some may react very calmly. The most important thing is that the child has space to react to the diagnosis in their own way and they know they can come to you with questions and concerns.    

   

Common feelings some children may experience include:    

  • Shame or self-consciousness about the way the condition presents (for example, a parent in a wheelchair).  
  • Sadness, fear, anger and grief about the changes and loss of experiences with the person who has PSP, CBD or MSA. 
  • Worries about their risk of developing the condition, about the families’ finances and about the impact of the condition on their own future aspirations and decisions.
  • Frustrations with their own activities being restricted such as not wanting to bring friends home or feeling bad about going out when the family is home.  

Some children, teens and young adults might react to the news by acting out or misbehaving at home, school or during activities. This can be a normal response to difficult news. If this is a concern, you can speak with their guidance counselor at school to let them know what’s going on, if applicable. If this behavior persists for a long time, you can speak with their doctor or consult a child psychologist.   

 

Some tips to navigate this discussion: 

  • Allow them space to react to the news, however that may be. They might be sad, confused or angry (younger children especially). They may also not really know how to react or may have limited emotional response in the moment. 
  • They may have questions that there aren’t answers to. Listen to their questions and answer to the best of your ability and to the extent you think is appropriate for their stage of life and be honest when you don’t have an answer.

There are no set guidelines for what should or shouldn’t be shared. Some families, due to proximity or other circumstances, can't prevent children and teens from experiencing the reality of the diagnosis. In other cases, some parents or grandparents might intentionally choose to share information about the disease over time. 

   

While it is tempting to withhold information, it is proven that children generally are resilient and will do better in the long run if they have honest and timely information. Regardless of how much information is shared with the child, it’s important to remember that there is no rush to tell them everything at once. These conversations can happen in small doses over time.  

   

Some tips to navigate this discussion: 

  • Consider how the child or teenager responded to the initial conversation about diagnosis and symptoms. Their initial reaction can be a good indicator of how much information they can receive at one time.   
  • Remember that children evolve and learn quickly. As the disease progresses, adults can become more candid with children as they grow older and learn to process difficult information.    
  • Ask the child how they would like to receive more information – do they want updated information as soon as you receive it? Should updates be given at a monthly family meeting? Or would they prefer not to know?  
  • Share what you believe is important for them to know. 
  • Create an environment that encourages questions and concerns. It can be a comfort to the child to have an open conversation about the symptoms they are witnessing and have space to ask questions. 

Discussions about life expectancy are hard to have. The conversation might come up naturally as they ask questions, but it may have to be intentionally discussed. It is important for them to know that this is a life-limiting disease so that they are not surprised by the disease progression and eventually end-of-life. 

   

Some tips to navigate this discussion:   

  • Share a general timeline of the disease journey. CurePSP's has a "Stages" resource for each of the diagnoses that outlines the general stages that people with PSP, CBD and MSA tend to go through.  These can be found on our educational resources webpage. 
  • When talking about death, avoid euphemisms (such as “passed away”, “they are sleeping”, etc.). Children often do not understand these phrases and they can create confusion. Although it is difficulty, children need to understand that death is permanent. 

If they are interested, there are roles that children and teens can play to support their parent or grandparent’s care. This will likely evolve over time and may require many continuing conversations as the disease progresses and needs change.    

   

The extent that they are involved comes down to the comfort, desired boundaries and needs of the person diagnosed, the child or young adult and the primary care partner. It also depends on the physical and emotional abilities of the child or teen.

   

Some tips to navigate this:   

  •  Assess what the person with the diagnosis is comfortable with. Are there certain caregiving tasks that they want to be off-limits for the child or teen?   
  • Ask the child or grandchild how they want to be involved, if at all. If they choose not to be involved, that’s okay – don’t force anything that feels uncomfortable for you or them.    
  • If children or grandchildren do want to be involved, find tasks that suit their abilities. This can range from sitting and playing a game with their loved one to helping with some age-appropriate physical tasks.   

Children and young adults can often bring levity and joy during challenging times. In many cases, they can help the care team to prioritize relationships and appreciate the small moments throughout the disease journey. In addition, living with this challenging diagnosis can have positive effects on children – the experience can strengthen familial relationships, help improve coping skills and instill a strong sense of empathy.  

 

“I experienced firsthand the special, unique relationship grandchildren have with their grandparents. That relationship evolves and deepens as grandparents go through the disease journey. These diseases are uncompromising, and it takes a care team to combat the daily battles. Grandchildren can play a unique role, offering levity and innocence in moments of struggle and hardship. There’s something very beautiful and poetic about taking care of a parent or grandparent and giving back to them what they gave to you. It was the greatest honor of my life to take care of my grandmother, especially at her most vulnerable and dependent. Being one of my grandmother’s primary caretakers was an experience that has profoundly impacted my life view and purpose.” (Sanjay Geevarghese) 

Teenagers and young adults have access to more resources than children do. Teens and young adults are more likely to look to the Internet to learn more about the disease. While this education and self-advocacy is important, they might learn a lot of difficult information very quickly. It can be helpful to give them more information in the initial conversation than you would a younger child to help prevent confusion or shock if they seek information about the diseases elsewhere. It can be helpful to reinforce to teenagers that they can come to you with any information they find on the Internet to verify for accuracy or share any fears about the information they learned.

In addition, preteens and teenagers tend to respond better to conversations that are not face-to-face. It can be more comfortable for them to have these discussions while on a walk, driving in the car or other similar activities.


Click here for the "I Am a Child or Teen Wanting to Learn More" page