The holidays are a wonderful time to catch up and visit with family and friends you don’t regularly see. For someone recently diagnosed with Alzheimer’s disease, however, holiday get togethers may also carry new stresses and concerns: should I disclose my diagnosis?
First, it is completely normal and understandable to feel uncomfortable or even fear sharing your diagnosis with others. How will people react? Will disclosing your diagnosis affect your relationships, work, or other responsibilities? Will this person continue to support you as the disease progresses? These concerns are valid.
That said, as the disease progresses, you will need the support of your friends, family members, and other loved ones. Additionally, starting a conversation now is an important way to educate those in your life about Alzheimer’s.
For those reasons, we recommend sharing your diagnosis with individuals you trust. You may find that you want to tell close friends and family. Others choose to share with a broader group of people. Either way, you should first assess your own comfort level. The Alzheimer’s Association also recommends asking these three questions:
- Who are the people I feel closest to?
- Who will continue to support me with this diagnosis?
- Who am I responsible for telling (spouse, partner, friends)?
It may also be valuable to identify individuals who you feel comfortable can disclose your diagnosis on your behalf. For instance, would you prefer your spouse/partner tell your in-laws about your diagnosis?
Once you’ve decided who to share your diagnosis with, you may want to practice the conversation beforehand or write down your thoughts.
Additionally, keep in mind these helpful tips:
1. You do not have to have a full conversation in one setting. This is just the beginning of your journey, and you and the person you are sharing your diagnosis with will continue to talk, ask questions, learn, react, and change.
2. You may want to come prepared with brochures or other information about Alzheimer’s disease. These materials might help guide the conversation and serve as valuable education.
3. Keep in mind that denial is a common reaction. You might first hear responses like, “But, you aren’t acting differently” or, “You’re too young to have Alzheimer’s.” These reactions stem from a lack of education about the disease, fear, and need for more time to process.
4. Sometimes, people respond well to clear next steps. You might consider ending the conversation by discussing how to plan for the future or provide resources to learn more about Alzheimer’s.
Overall, having an open and honest conversation with people you trust is the best way to educate, share your experiences, and discuss your expectations for the future.
For more advice and resources about sharing your diagnosis, visit the Alzheimer’s Association.
Additionally, Iona’s Helpline specialists are also available to answer your questions and provide resources and referrals. Call (202) 895-9448 and ask for our Helpline, or email email@example.com.