To Tell or Not To Tell? A Very Important Question

As I travel across our six-county area presenting educational programs and visiting support groups, I am often made aware that many caregivers I meet have not shared their situation with neighbors, friends or even family. There seems to be a reluctance to reveal a diagnosis of Alzheimer's, or any other form of dementia. I can understand this reluctance because there is a need to protect those whom we love. If, for example, my husband is becoming quick-tempered and suspicious because of the damage to his brain from Alzheimer's disease, I do not want my close neighbors to see this behavior. I am embarrassed for him. This feeling is understandable.

However, there could be advantages to informing family members and close friends. Here are some important reasons to make others aware.

• Educating family and friends about the disease may help them feel more comfortable around the person. Personality and mood changes will be easier to handle if others understand why they are happening. Educate others to help them understand that it is the disease, not the person who is causing the changes.
  
• Educating family and friends may help them feel more comfortable with what you are dealing with. Friends might attend a support group meeting with you or read educational materials you might have. As a caregiver, you have now opened up the possibility of additional people with whom to share your feelings. No one should face this disease alone.
  
• Sensitizing others has a ripple effect. As we educate and allow people to understand the symptoms of this disease, there is a greater chance the disease will be recognized in its earlier stages.
  
• Sharing with those around us de-stigmatizes the disease. The earlier the detection, the more beneficial some of the new medications can be. It is also best to address planning, safety and financial issues as early as possible. Alzheimer's is a medical condition, not a psychological/emotional disorder or a contagious virus.
  
• Explaining the responsibility of caregiving and how it has affected your life will help others have a better sense of how they can help. Don't hesitate to ask family for support. Have several tasks in mind for people to do. Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
  
• Talking with children and teenagers in the family can also help. Young children are often able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.

For more information on how to make others aware, the chapter office has a pamphlet entitled "You Can Make a Difference: 10 Ways to Help an Alzheimer Family." There is also a handout from the Just the Facts collection entitled "Telling the Patient, Family and Friends."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.