Talking about brain disease, diagnosis, prognosis and treatment can seem overwhelming sometimes. Whether you just received a diagnosis or you are caring for someone who has been diagnosed, you might feel a strong desire to talk ... and not know what to talk about.
Talk you must. A brain disease affects not just the individual but family and friends. The question is, how?
The Direct Approach
For some people, it is very easy to face a problem head on: They schedule a family meeting, invite that important person over for lunch or use car time to address the issue. They take the direct approach and say something like, "There is something I've been meaning to talk to you about. I've been diagnosed with _____________ and that means we have to make some decisions going forward."
But other people might feel better with a "conversation starter" - a way to start the conversation indirectly. In fact, conversation starters are especially useful when talking to children, who need some context, and to people who are having a hard time with their own or someone else's diagnosis.
One way to start a conversation is to acknowledge some of the changes the person might have noticed either in you (if you have the brain disease) or in themselves (if they have the brain disease.) Loss of memory, coordination, clear thought or speech is something that other people notice and worry about. For example:
"I know you have probably noticed that I am not able to plan a meal anymore. I have been ordering out a lot to try to hide that, but I think we should talk about that and some other issues that are on my mind."
Tips for Talking about Your Brain Disease
Use movies, books, TV shows, current events and famous people as a way to start a difficult conversation. Children in particular may respond well to conversations that seem casual. Remember, children will not want to talk for a long period of time the way an adult might. They might have one or two questions and then move on to another topic. That's OK. Their minds are working hard, and they will be back with more questions later.
Questions you might use to start the conversation:
- What did you think about the character who had ____________ (disease)?
- How do you think the other characters treated them or should have treated them?
- Have you noticed some similarities between that character and (the diagnosed person)?
Resources that might help include:
- Children's books: "The Memory Box," "The Sunsets of Miss Olivia Wiggins," "My Grandma's in a Nursing Home"
- For adults: "The Notebook" (movie and book); "Rain Man" (movie, autistic spectrum disorder); "As Good As It Gets," "Matchstick Men" (obsessive compulsive disorder); "50 First Dates," "Memento" (memory loss, traumatic brain injury)
Choose the Right Moment
Choosing the right moment to have these discussions is very important. If you are not planning to have a formal conversation, look for moments when people are relaxed and not stressed by other factors in their lives. Talking while driving is often a good idea, especially with children. However, if you plan to discuss this while in the car, make sure you are the driver.
If you plan to use a trip, movie, museum tour or book as a conversation starter, you might find that the best moment to discuss the issue arises in the day after the event.
Talking to Someone About Their Own Diagnosis
If you are trying to talk to someone who has been diagnosed with dementia, Alzheimer's or cognitive impairment of some kind, you might find that your conversations are repetitive. Stay calm and be patient, even if you are explaining the issue for the fifth time as if it were the first.
Consoling Communities; "Family Conversations With Older Drivers," Hartford Financial Services Group
ABOUT THE AUTHOR
Written by Madeline Roberts Vann, MPH
Reviewed by George T. Grossberg, MD
St. Louis University School of Medicine
Department of Psychiatry
Last updated August 2008