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Breaking Bad News to a Senior with Dementia

by Martha Stettinius, Dementia Expert
March 26, 2014

Question: My father recently passed away and my family has not broken the news to my mother who is suffering from late-stage dementia. Is it wise to tell her this?

Answer: I am so sorry that your father has passed away and that your mother is living with advanced dementia. Your question is one that many people face, unfortunately, and it’s an important one.

For many of us who care for a person with advanced Alzheimer’s disease or another cognitive impairment, our instinct may be to protect them from devastating news such as this. We may believe that a person who is living with the middle or later stages of dementia cannot “process” such information, so there is no point in sharing such news.

Many researchers and writers on the subject of dementia believe, however, that people who are living with dementia continue to feel a wide range of emotion through the last stages of dementia, and can understand much more than may be apparent to us. Since people who are living with advanced dementia can feel a normal range of emotion, some people say that they should be spoken to in the same way as anyone else—as adults who deserve to be told about news—good or bad—about people who are special to them.

In her book Learning to Speak Alzheimer’s, for example, Joanne Koenig Coste writes that we should “assume that the patient can still register feelings that matter.” John Zeisel, author of the book I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s, believes that a person living with dementia deserves to be treated as a whole, complicated, mature person. “If we are honest about our feelings around a person with dementia, he says, they “can do this honestly as well.” Whether we’re sad or happy, the person with dementia will feel “particularly good when he can express a feeling, whether of concern, empathy, fear, or love”—in words, if they still have their language, or with touch, gesture, or facial expressions.

For these reasons, I would recommend telling your mother the truth about her husband having passed away. She may grieve in that moment, but that’s OK. She deserves to know the truth about her long-time partner. Her feelings of sadness and distress may linger for a few hours, or may dissipate immediately, but either way she is unlikely to remember the fact of his death for very long. Thus the pain of sharing the news will be short.

What is unnecessary, I believe, is for family members and friends to tell her the news more than once. It’s also unnecessary to try to “re-orient” her to the truth of her husband’s death if she talks about him as if he is still alive. You may want to ask your family members and friends to respond to her as if her husband is still here. For example, if she says something like “I need to see my husband,” they could say “Yes, he went to work and will be back later.”

While it’s good to share the truth with people who are living with advanced dementia, it’s not a good idea to do it over and over just to correct them. After you share a painful truth once, it’s better to meet them in their reality and tell them a few white lies as necessary to spare them from further distress.

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Martha Stettinius was a “sandwich generation” caregiver for 8 years for her mother with dementia, and is the author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir.” An editor with a master’s in English Education from Columbia University, she blogs for and serves as a volunteer representative for New York State for the Caregiver Action Network.

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