The Center for Brain/Mind Medicine > Support & Education

Sharing the Diagnosis

Having Hesitation?

Many people with dementia and their families are hesitant to share the diagnosis with friends and family members for a range of understandable reasons, including:

  • It’s hard to acknowledge.  Receiving a diagnosis of dementia is hard to process, but the more you talk about it, the easier it gets.
  • Even when you feel more comfortable with the diagnosis, the demands of caregiving can drain your emotional energy, making it hard to have these conversations.
  • The person with dementia may not accept the diagnosis, have insight, or be ready to share.
  • Stigma or beliefs about dementia—we’re actively working to reduce stigma and discrimination, but people with dementia have been excluded, judged, disrespected, diminished, and treated as incapable in the past.  You can choose how to respond.  Learn more by clicking here.
  • Fear of worry or burden—family and friends who care about you and your person are going to worry.  Provide them with examples of what is hard and frustrating, but also what is good and joyful.  Provide specifics on how they can help by supporting specific cognitive problems or providing care and resources.

If you work with a therapist or counselor, these are great topics to process with them.

Benefits of Sharing the Diagnosis:

  • You cannot make this journey alone.  You’ll need support from those who know and understand you.
  • Concealing or denying the diagnosis does not make it go away. In fact, it can make coping with dementia more challenging.
  • Many relationships are strengthened when people face challenges together.

When & With Whom to Share the Dementia Diagnosis

You are in control of:

  • WHO:  Consider the relationships in your life.  Some choose to tell a select few, while others may decide on a larger network.
  • WHY:  What is your goal in sharing the diagnosis with others?
  • WHEN:  Right after the diagnosis?  Or give yourself time to come to terms first?
  • WHAT:  What language or terminology will you use?  Be prepared to tell people what you need from them or how they can be helpful.  Offer education if they need it.
  • HOW:  In person, via email, or over the phone?

How do you think people will react?  If they react in unexpected ways, how will you feel?  How might you respond?  Learn more here.