Being told you have any medical condition can be a very upsetting situation, but you don’t have to face it alone. However, it is up to you who you wish to tell or not tell, and how you wish to tell them.
Educate Yourself
Before you tell everyone, it is often best to educate yourself as much as possible about your condition. For example, there are several different kinds of dementia, each with its own prognosis (suggested outcome). Every patient is of course different. Some are genetically predisposed towards dementia and Alzheimer’s. Others are more proactive about their health, which can help counteract genetics to some extent.
Some forms of dementia have standard treatments that are successful and can help you maintain a high quality of life and independence for many years to come. In the case of Alzheimer’s, however, cognitive decline will reach the point where a person can no longer be independent. Most Alzheimer’s patients rarely live beyond 10 years after diagnosis.
Giving people brochures or website links that convey the message you want to share can help.
Age
Age can be a factor in one’s outlook. If you are in your 80s, for example, dementia is probably not such a huge surprise or upheaval in your life compared to some patients who are developing dementia as early as in their 40s and 50s.
Marital Status
If you are married or in a relationship, a diagnosis of dementia can put a real strain on a relationship. It can be depressing for the person diagnosed. They often hate the idea of “being a burden” on anyone. For both partners, it can be frightening, because there are no definite answers as to what happens next. There are treatments for dementia and Alzheimer’s, and new ones are emerging all the time, but each person will respond differently to their type of dementia.
Deciding Who to Tell
Your decision should be based on how close you are to the person and how important it is they know. It can also be based on what you think the person will be able to hear without being devastated by the news. A third consideration is how much that person is likely to remain in your life and give you emotional and perhaps practical support as time goes on.
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.
Determine your comfort level as to how many people you would like to know. You can always tell more people later as needed. The important thing is to feel supported as you cope with your news.
Picking Your Moment
Some people with dementia like to get their important people one on one to break the news. Others might organize a gathering of family and friends to tell people all at the same time and deal with some of the most common questions most people have when they first hear the word dementia.
The group should be relaxed and not hyper when you tell them. You might also consider writing down what you wish to say so you can give them the important fact without getting sidetracked.
Talk about planning for the future together, and your loved ones should soon start to accept the diagnosis and help you with your “new normal” as you live with dementia.