Should me tell my mother, who has dementia and can get very emotional, that her brother has passed away?

1 answer | Last updated: Sep 14, 2017
Lisa, youngstown,oh asked...

My mom, 73 years old, has had dementia for about a year and a half. Just recently we had to put her in a nursing home. She has other health problems beside the dementia (diabetes, heart issues, and overweight). Her brother passed away while she was in the hospital, before she went in the home. We have not told her about it yet because she has been on an emotional roller coaster since everything has happened. She really is in the past a lot, talks about parents being here when they have been gone over thirty years, and also about a lot of other family, siblings, that have passed. These are all things we have come to realize is a part of the dementia process. She is going to stay full time in the home now and I've been slowly talking to her about it. We brought her her chair from home and some pictures for the walls to make it a little bit more like home, so lately she has been in a lot better spirits, but still has some bad days. My question is this: Should we (my brother and sister and I) and also a social worker, sit down with her and explain what happened with her brother and also about staying there long term? Since she becomes very emotional and most likely she would forget very quickly, should we even upset her?

Expert Answers

Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. Previously, she directed Silver Club, early-stage and adult day programs serving individuals with Alzheimer's disease and related illnesses.

It's always difficult to decide what to tell individuals in the middle or later stages of dementia about the death of a loved one.  Because they are in the middle or later stages, sometimes they do not really have the ability to comprehend or retain the information.  But that does not mean they do not have the right to be told about it.  Since your mother is already having trouble retaining the information about her parents and other family members being long gone, chances are she will not retain this either.  

There are several ways to approach this.  One is to gently remind her when she talks about a person that he/she has been gone a long time.  If this is upsetting to her – causes her to grieve as though she is hearing it for the first time or to get angry and deny it – then I do not recommend this approach.  I believe our job is to provide comfort and support (and some joy when this is possible) to people who are coping with a very difficult illness.  Adding bad news that they can’t retain, that is a shock every time seems cruel.  Sometimes people with dementia don’t show much emotional response at all because of changes in the brain.  This can be somewhat shocking for families.  It doesn’t mean they don’t care – just that they are no longer capable of responding in a normal way.

Another approach is to reminisce with her when she brings someone up.  For example, if she talks about her parents, you might say, “Tell me more about your mom.  What was she like?”  Give her an opportunity to talk about the people she loves and is missing.  Sometimes people, in the process of reminiscing, will remind themselves that the person has died or will ask about that.  Other times they simply get pleasure from talking about the person.  If she asks where her brother is, you can simply answer, “He’s not here right now.  I know you are missing him.”  It is not the whole truth, but it is not a lie either.  In general you want to help the person with their emotional state, not try to bring them back to a reality that they can’t grasp.  With regard to her brother who recently died, I might look at pictures of him and mention that he has recently died and help her through whatever emotions come up.