Getting started

The period immediately after a loved one is diagnosed with dementia can be stressful and frightening. You both might be struggling to come to terms with the diagnosis. The person with dementia might not want to let others know about the diagnosis out of fear that they will become uncomfortable around him or her. You might feel torn between wanting to respect the person's privacy and needing to talk to someone about the diagnosis and how your role will change as a caregiver.

If possible, discuss how the person with dementia wants to handle the situation and get permission before sharing the information. Ideally, you'll explore the subject while he or she is still able to express personal wishes. If he or she is unable to do so, ask his or her legal decision-maker for guidance. If you're the legal decision-maker, act in the person's best interests.

If you're anxious about how to share the diagnosis, keep in mind that family and friends might already have a sense that something is wrong. If you're afraid that informing others about the diagnosis will be a burden on them, consider the alternative: Keeping the diagnosis a secret could be draining for you. The sooner you tell family and friends, the sooner they can begin giving you and the person with dementia much-needed support.