Disclosing a dementia or MCI diagnosis

It might feel scary to tell others if you've been diagnosed with dementia or even just mild cognitive impairment (MCI). Start with those you think will be the most supportive. Perhaps close family and friends.

Common reactions. People will vary in how they respond to the news. Some will be genuinely caring and ask how you are doing and how they can help. Lean into those relationships. Others may respond with denial ("No, not you!" "You're too young …"). They may need to hear some facts about neurocognitive disorders. Some people may react by pulling away. Ouch. This is disappointing. Do your best to not take it personally. They may need time to adjust. Or they may simply lack information about your condition and have unfounded fears. Again, education may be helpful.

What to say. Choose a quiet time and place where you can talk one on one. Or you might want to write a letter or email.

• Give them a context. Let them know about the diagnosis and its stages. People conjure up extreme images and don't realize there are many months or even years to have good times together.
• Tell them what you can still do and suggest modifications if needed. Perhaps you'd like to continue playing golf, but need them to manage keeping score or not worry about scoring at all. Or you'd like to continue meeting for lunch, but maybe get takeout and go to a park. A restaurant might be too distracting for conversation.
• Let them know how they can help. Be specific.
  • Do you want to continue doing things for yourself? Tell them that letting you find your way feels respectful. Ask for their patience if you fumble.
  • Perhaps you'd like help with computer tasks or rides for errands.
  • Maybe you'd just like someone to talk to as you process these changes.
  • You may want to ask that they look for ways to support your partner.
• Have information ready for them. Many people are underinformed about conditions they haven't had. Give them a website or pamphlet to read.

Continue to engage with life. You still have the ability to enjoy life and live with meaning and purpose. Stay committed to the hobbies and activities you love. Look for an early-dementia support group. You may find new friends—people who understand what you are going through—and new ideas for living well. 
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Looking for early dementia resources?
Give us a call at 203-826-9206.