Sharing a Diagnosis of Dementia
by Heather Gately
“Phew! I got through that interaction without too many slips ups, pauses or stumbling over my words! I hope they didn’t notice my pauses or when I forgot what I was going to say! Did I really call my best friend by the wrong name??”
The frustration that someone feels when they start to notice their memory slipping is nothing compared to the fear that someone else may be noticing that your memory isn’t working properly! Of course, the fear then sends adrenaline and cortisol pumping straight to the brain to exacerbate the entire interaction by causing the brain’s ability to recall and react to falter. Panic sets in and game over!
But, what if I decided to take the pressure off of the situation by telling my friend or family member that ‘sometimes I struggle with my words or memory, please be patient with me if I have told you this before….’? In a meaningful way, you are taking control of the narrative around your memory issues and your comfort level will disarm someone else’s unease thereby, putting you at ease too!
Receiving a diagnosis of dementia can be overwhelming and life-changing. One of the most challenging decisions you might face is whether to share this news with others. Here are some considerations to help you navigate this sensitive topic.
The Benefits of Sharing
Emotional Support: Telling close family and friends can provide you with a support network. They can offer emotional comfort, help with daily tasks, and be there for you during difficult times.
Understanding and Patience: When people know about your condition, they are more likely to be understanding and patient. This can reduce misunderstandings and frustrations in your interactions.
Access to Resources: Sharing your diagnosis can open doors to resources and support groups that can help you manage your condition better. You might find others who are going through similar experiences, which can be incredibly comforting.
The Challenges of Sharing
Stigma and Misunderstanding: Unfortunately, there is still some stigma associated with dementia. Some people might not understand the condition and could react with fear or prejudice.
Privacy Concerns: You might feel that your medical condition is a private matter and prefer to keep it to yourself. It's important to respect your own boundaries and comfort levels.
Emotional Impact: Telling others about your diagnosis can be emotionally draining. You might have to deal with their reactions, which can range from supportive to distressed or even dismissive.
When and How to Share
Choose the Right Time: There is no rush to tell everyone immediately. Take your time to process the diagnosis yourself before sharing it with others.
Be Selective: Start by telling those closest to you, such as family members and close friends. You can gradually expand the circle as you feel more comfortable.
Prepare for Reactions: People will react in different ways. Some might be supportive, while others might need time to process the information. Be prepared for a range of responses and give them time to adjust.
Tips for Sharing
Be Honest and Clear: Explain your diagnosis in simple terms. Let them know what dementia is and how it affects you.
Express Your Needs: Let people know how they can support you. Whether it's helping with daily tasks or just being there to talk, clear communication can make a big difference.
Seek Professional Advice: If you're unsure about how to approach the conversation, consider speaking with a healthcare professional or counselor. They can provide guidance and support.
Deciding whether to tell people about your dementia diagnosis is a deeply personal choice. Weigh the benefits and challenges, and make the decision that feels right for you. Remember, you are not alone, and there are many resources and people ready to support you on this journey.
To care partners, spouses, and family members of someone living with dementia: It’s okay to allow your loved one to stumble over their words or memories. Our instinct is to jump in and rescue them, but sometimes it’s better to pause, let them breathe, and encourage them to try again. A gentle hint or prodding can help them succeed in their interactions. The phenomenon of ENABLE/DISABLE occurs when well-intentioned family members interrupt conversations to protect their loved ones from embarrassment due to faulty memory or mistakes. However, this can undermine their confidence in communicating. Instead, embrace any silences or pauses, keep smiling, and honor their efforts—even if their words don’t come out as they used to!
If you have any questions or need further support, don't hesitate to reach out to healthcare professionals or support groups. Your well-being is the most important thing.
If you would like to share your story in a feature please email info@liftedbrainwellness.com. Your story might help someone else facing a similar situation.