To Tell or Not to Tell

“But Dr. Robin, if there is no cure or effective treatment, why would I put Mom through the tests and get a formal diagnosis? If there is nothing they can do, wouldn’t we be better off not telling her?” This is a loaded question I get frequently asked! There are risks and consequences to telling Mom that she has a dementing illness and there are risks and consequences with not telling her. So, what’s a kid to do?

First, let's do an old-fashioned pros and cons list, here’s a start- if we get Mom tested and a formal diagnosis:

Pros

• You and Mom both know the reason for the dementia and behaviors

• You can include Mom in her plan of care and support network

• Mom may be able to participate in clinical trials which could improve her quality of life

• Mom may make healthy changes in her lifestyle: increased socialization and engagement with her support network, paying attention to eating and sleeping habits, and increased activity.

Cons

• Mom may experience anxiety and anger

• Mom may become depressed or feel hopeless

• Mom may experience denial and refuse to acknowledge her limitations

• Mom may withdraw as she becomes frustrated with her inability to “keep up” in social situations and blame others for her mistakes

There are a few things to remember, one is that you know Mom best. What are the pros and cons that apply to your situation? Take a few minutes and write them down.

Ultimately the decision is yours. Other things to remember: dementing illnesses are chronic and progressive in nature; just because you told your loved one Monday that they have dementia, they may not remember on Tuesday that they have dementia; a diagnosis doesn’t mean death is imminent (unless you’ve waited too long). You can still plan for the best possible quality of life- together if you tell or with you at the helm of her life’s decisions if you don’t tell. There is no universal right answer here. So, think about it carefully! Don't forget to discuss your situation with your medical provider and the family support you have available.