Sharing your diagnosis with others is an important step toward integrating Alzheimer's disease into your life. You may be hesitant to share your diagnosis with some people, given the impact such a disclosure may have for you. Keep this mantra in mind: Alzheimer's disease is not your fault.
Why tell others about your diagnosis
As the disease progresses, you will need the support of those who know and understand you. Concealing or denying your diagnosis will limit your ability to cope with the challenges ahead. While some relationships may be tested by what you are revealing, other relationships may be strengthened.
It is normal to experience fear or discomfort about sharing your diagnosis. However, talking openly with those you trust is a powerful way to educate those around you about the disease and to engage their support.
Deciding who to tell
Some individuals choose to share their diagnosis with just their closest family and friends, while others may be comfortable sharing their diagnosis with a broader group of people. Assess your personal comfort level before making this decision. You may feel more supported sharing your diagnosis with close friends and family first before telling others.
Consider the relationships in your life and determine who should be included in your disclosure:
- Who are the people I feel closest to?
- Who will continue to support me with this diagnosis?
- Who I am responsible for telling (spouse, partner, friends)?
How to share your diagnosis
After deciding to share your diagnosis, consider when to tell your news. You may want to tell others about the diagnosis as soon as you get it. Or you may want to wait until you have had time to come to terms with your diagnosis.
It was hard for everyone to accept the diagnosis. While my family had to come to terms with this new situation, so did I. I needed to put it out there so that we could begin dealing with the new me.
LuPita G., Living with Alzheimer's disease
To increase the likelihood of a comforting reaction when you tell your friends or family about the diagnosis, find a time when you can be alone and relaxed together. Give some thought to the conversation — what do you want to say? Consider writing your thoughts on paper and bringing that with you.
When you share your diagnosis, you may want to talk about planning for the future or about how family and friends can help; you also may wish to explain more about Alzheimer's.
Help those closest to you come to terms with your new situation by considering these questions:
- How do I think this person will react? If the reaction is something unexpected, how might I feel? What can I do in response?
- How do I want this person to treat me? The diagnosis represents a big change, but it's only gradually that my needs will change. What do I want from this person right now?
- What does the person need from me now? What can I provide that will help?
Tips from individuals in the early stage
You don't need to talk about everything in one sitting if the person is having a reaction that is difficult for you.
Let the person know that both of you will be having different reactions about this over time.
You both can continue to talk about your thoughts and feelings throughout your relationship.
Provide educational brochures about the disease.
You can also direct him or her to alz.org for additional information.
Let the person know that you are still you.
Even though you are now living with this diagnosis, who you are and what has made you close to each other continues unchanged. Continuing your commitment to the relationship you have can be comforting to both of you.
Let people provide assistance when it makes your life easier.
Just like it helps you to feel useful and needed, helping may make them feel better, too. Accepting help is not an all-or-nothing proposition, and letting others help is not the same as being helpless. They are trying to make life easier for you, and it may help you to let them do that when it feels appropriate.
Responses to diagnosis
Consider how you felt after hearing your diagnosis for the first time. Just like you, the people with whom you share your diagnosis will likely experience similar reactions including fear, anger or relief that there is an explanation for symptoms. You may encounter unexpected or negative reactions. Family and friends may react with denial, or with comments or behavior that reflect their misconceptions about Alzheimer's disease. Responses may include, "But you seem to be fine" or "You're too young to have dementia."
Denial is a common response to the disclosure of a serious illness; it provides distance from overwhelming feelings. Stigma or misconceptions about Alzheimer's may exist due to a lack of information. These reactions reflect the person's need for more time and/or education before they can respond to you in helpful ways. Allow your family or friends time to digest your news so everyone can move forward together in a positive way.
Your first conversation about your diagnosis may grow into an ongoing dialogue about your experience living with Alzheimer's. Honest communication about your experience and your expectations of each other can help strengthen your connection. Learn ways you can help your family and friends adjust to your diagnosis.