Telling Others About Dementia
Many people feel worried and scared to tell others about a dementia diagnosis. They fear how they will be treated. But talking about a dementia diagnosis can be helpful " now and in the future.
Why tell others about your dementia diagnosis?
- In the early stages, it is helpful to have friends and family who know about the diagnosis. People who know can listen, give support, and tell the person that they are loved.
- If others know about dementia, they can help the person to make plans for when dementia gets worse. When dementia gets worse, friends and family who helped make care plans can speak up for the person to make sure they get the care they need and want.
- A lot of people don't know that dementia is a disease, just like diabetes is a disease. Sometimes, they will blame the person living with dementia for the changes caused by the disease. Talking openly about dementia can help them know about the changes and be more willing to help.
Who should be told about dementia?
Some people only talk with close family and friends about their diagnosis. Some may tell neighbors, coworkers or others they know. It is up to the person living with dementia to decide who to tell and when. The person may want to think about:
- Who they feel close to and trust.
- Who they feel will support them.
- Who will respect their privacy.
- Who and when to tell others besides friends and family " such as a boss at work.
Decide What to Say
It can be hard to find the right words to talk about a dementia diagnosis. Sometimes it helps to practice what to say before telling others.
Ways to tell people about a dementia diagnosis
Tips for telling others about dementia
- Plan when and how to tell others. Decide if it is better to tell others one at a time, or as a group. Expect to have more than one talk over time.
- Find a quiet place to tell others. They may have strong feelings about the diagnosis.
- Explain that Alzheimer's disease is a brain disease, not a mental illness. Share facts about dementia.
- Invite family or friends to dementia support groups.
- It is also important to tell children and teens about Alzheimer's disease. Decide when and how it would be best to tell them.
How will others react?
Many people will offer love and support to help the person cope. Others may spend less time with the person. Often, this is because they do not know what to say or how to act. That can be hurtful. Giving facts about dementia may help.
Get more help
The Alzheimer's Association has up-to-date information and facts about dementia that may help. They can provide more tips on how to tell others about a dementia diagnosis. The helpline and website are below.
Call the Alzheimer's Association helpline at 1-800-272-3900 or visit www.alz.org.
Written By: Morgen Hartford, MSW
Care Partner Information ~ Tips for Providing Older Adult Care
Edited by an interprofessional team from the University of Arizona Center on Aging
This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U1QHP28721, Arizona Geriatrics Workforce Enhancement Program. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government