**We use the term ‘caregiver’ and ‘care partner’ interchangeably. Educating others is an important aspect of helping others.
It is often difficult for people to understand how someone who is young and healthy can be battling a progressive brain disease. Telling others about the diagnosis can be an overwhelming and scary thing to consider. Some people are so relieved to finally know what has been causing their symptoms they want people to know right away. Other people might be worried about the stigma associated with the disease and want to maintain their self-image for as long as possible.
Early Onset Alzheimer’s Diagnosis
Whether you are the person with early onset Alzheimer’s disease, the care partner, or family member, the most important first step is to accept the diagnosis. It can be very therapeutic and comforting to share the diagnosis with close friends and family members. By sharing the diagnosis and educating friends and family about the disease, then you are taking steps to build your circle of support. Creating a circle of support is important for every person impacted by this disease. The sooner the diagnosis is shared, then people can begin learning about the disease and ways that they can provide support.
It is not uncommon for friends and family to go through a period of denial about the diagnosis. Society has been so conditioned to think of Alzheimer’s as a disease of older people, so they may have difficulty in understanding how someone under the age of 65 can have Alzheimer’s.
As previously stated, there is a concern about how others will react to the diagnosis. Some people may be quiet and not know how to respond. Others may be respectful, caring and comforting. Some people may not be able to handle the news, and as difficult as that can be, do your best to let it go. Much of their reaction will be based on fear.
Sometimes it is easier to write a letter informing friends and loved ones about the diagnosis. This can be a great way to share the diagnosis, if you are nervous about face-to-face communication. When writing a letter, provide information about the diagnosis, symptoms, and ways they can help. Whichever method you choose to share the diagnosis, we advise that the person with early onset Alzheimer’s, as well as the care partner are in agreement on who should be told about the diagnosis and how the information should be shared.
The Gayle Wells Foundation for Early Onset Alzheimer’s & Care can assist you with writing a letter to share with your friends and family. We can also provide customized information based upon your diagnosis and symptoms that provide helpful tips and tools that can be shared with family and friends.