Do we tell my grandmother, who is suffering from Alzheimers, about a death in the family?

14 answers | Last updated: Dec 06, 2016
A fellow caregiver asked...

Should we tell my grandmother, who is in the early stages of Alzheimers and living in an assisted living facility, that her daughter died? If so, what is the best approach?

Expert Answers

Geri R. Hall is an advanced practice nurse who works in the department of neurology at the University of Iowa College of Medicine and at the Banner Alzheimer Institute in Phoenix, Arizona. She's also a speaker and author who since 1996 has facilitated the online support group for the Washington University, St. Louis, Alzheimer's Disease Research Center's Alzheimer List.

On the Alzheimer List (from Washington University ADRC) we have dealt with this many times and for people in many stages of the disease. Bottom line...there are a few rules:

  • We feel the patient always has the right to know
  • The patient may cry, grieve, or respond negatively...but it is their honest and desirable response to a significant loss.
  • If they ask for details, tell them; if they seem to forget, let it go. * Even is the final stages of AD patients are capable of comprehending at some level -- they tell us this during lucid moments.
  • Always treat the patient with simplicity, compassion, and honesty.
  • Tell the patient at their best time of day in a quiet place that is free of distractions, tv, and other people -- You would be amazed at the number of people who do this in a crowded room or with the tv on. Take the person's hand and don't be afraid to let them see you cry. The non-verbal expression of tears is a powerful communicator.
  • If the person is capable of moving, you may want to take them to the funeral depending on behavior and cultural preferences.
  • Reminisce with the patient about the person who has passed in order to establish the link..yet avoid saying, "You remember Mary, right?"
  • And finally, remember that telling the patient is something you need for YOU. The patient is a member of the family who you need for moral support. You would be amazed at how often even nonverbal patients will stroke your hand or murmur words of comfort so you can grieve. It is a pretty amazing phenomenon. When my husband's uncle died, his wife was obtunded in a nursing home for several years following a brain tumor. My husband didn't want to tell his wife but I insisted. We went to her after her nap and both took her hand. She turned and faced me -- which she had not done in quite a while. I quietly told her that her beloved husband had died and that the funeral had been lovely and well attended. She took my hand and truned away. A week later she peacefully died. I think she knew and was waiting.

Think about it. If it was you who had dementia, wouldn't you want to know if your loved one had passed?

Community Answers

Mclin answered...

Yes, ALWAYS tell them! The expert answer above is superb and right-on with my significant experiences involving this issue!!!

In our state, we have a Patient Bill of Rights, and are bound by law to "honor" their right to know, or to at least be told!

It is my experience, if they understand enough to show grief or loss (cry) at learning of the loss of their loved one, like a lifelong partner and spouse, the family should "honor" them by asking what THEY want to do in attending the funeral. Go to any extent to honor their request, and you will feel good and be blessed by your decision!

Make plans....if necessary, take them for only part of the funeral, and have someone close, other than family, that doesn't need to remain, and can be in charge of getting them to the service just as the family arrives, and depart with them 3-4 min. prior to the end of the service, and leave the church and take them back home where that person will remain with them until family returns from their funeral obligations. A wheelchair is also a good option even if not physically needed. It makes them less approachable/accessible by others, and easier for the person tending them to make the quickly needed exit. It is the strong emotions of others they have not seen for a long time, and the likely "not knowing" or remembering these caring and loving "faces" from long ago that can be the most upsetting part of the day for the dementia patient.

Also, as the expert refers to, honor and remember their faith and/or cultural differences. If they lived their married life in a church as a God-loving Christian couple, they would want to be at that funeral for the parting of their loved one. Honor their union and their life of Christian (or other) sacred beliefs!

Contacting professional organizations for an answer to this is the "easy" way out, and will likely only garner you a generic response, for they do NOT know your family member personally, past or present. Do NOT make this mistake!

Again, "EXPERTLY" phrased: "If it was you who had dementia, wouldn't you want to know if your loved one had passed?" AND, I'd like to add: "Wouldn't you want, if you had dementia, to be honored by your children, and be asked your wish to attend a funeral or not?" Grief is not limited to the coherent and living normal human species of life as we know it, and all of these stages of grief are just as important to the dementia patient....lest we forget, because they can't express that to us in words! This is only fair and just, for they are NOT dead!

A fellow caregiver answered...

I have not told my mother about the death of my daughter. Mom asks about my daughter frequently and I don't want to go through the sad explanation every time nor do I want to subject Mom to this sad news.

Crisr answered...

My mother is a patient and I take care of her in my home along with some care givers that bathe her and care for her when I'm at work. My experience with telling an Alzheimer patient about some one passing or simply to remind them that the person they ask for is deceased is that they will continue to ask. This may not affect the patient as much as it does the caregiver. In my experience having to reiterate to my mom that my dad is gone and that her parents are gone and that her brother is gone etc., can get a little emotionally troublesome. So, for my own sanity, I pick and choose the time when and if I tell her the truth. This may sound a little callous but her short term memory is practically non existant so what I tell her now is gone in a matter of minutes yet it remains with me for some time. I don't have the accolades that Ms.Hall has but I think every care giver should use their judgement as to how to handle the patient in your care as long as you , 1)do what is best for the patient 2) you as the care giver need respite and interaction with outside sources in order to recharge.

Liu fengxi answered...

I completely agree with Ms. Hall on telling a dementia patient about a loved one's death, but the person bearing the bad news should be prepared: the response of the patient may not be what one expected. Years ago, my mother had to inform my aunt that both her sons had died suddenly, within a week of each other. My aunt, who had been living with dementia for almost 15 years and was in a nursing home for 6, did not take the news well. She called my mother a liar and told her to get out and never come back. My poor mother, who was the one who had to plan the funerals and was in tears when she delivered the news, was stunned and hurt. Yet, to her credit, she continued to visit my aunt, who seemed to have forgotten the entire incident and the news about her sons. But I think about this often, now that my mother is herself struggling with Alzheimer's. She took so much upon herself, even when the people around her showed little appreciation or gratitude. It's now my turn to show her the same compassion and understanding she showed my aunt.

Mj901 answered...

Two years ago, my mom was in the early stages when my dad died. They had been divorced 37 years. I was the one who told her and took her to the visitation. That day and night I believe that her dementia advanced. It was the first time I saw her not know who we were. She tried and tried to put it together. She would cry and say she was loosing her mind. It was awful.

Now in the later stages, I would only tell her if it was her brother or sister that had passed. She really wants to believe everyone is well and happy.

In these later stages, I feel it's not necessary to lay out every detail of reality. After all, she is not living it and honestly prefers her own version.

Dianegbs answered...

Both of my parents suffer from Alheimer's Disease. My husband, daughter and I cared for both of them but Dad became combative and we had to put him in a home after about 18 months of having them come live with us. We still take care of my mother. My father is in the late stages, although in good health. But I imagine he will go within the next 12 months, he will be 80 at the end of April. My mother is in the beginning of the last stage, but so far still knows who we are. If my father dies before she does, I have no plans to tell her about it. It is going to be awkward when it comes to funeral time - currently I plan to have her stay somewhere with someone who doesn't mind missing the funeral - but we'll deal with it. The reason I don't plan to tell her is because I saw how grieved my father was - in earlier stages of AD - when my mother told him over and over several times a day (because Dad asked) that his parents were deceased. My mother's disease has progressed enough that she can't remember going to visit Dad at the "home" and becomes hysterical because she can't remember. I can only imagine how hysterical she will become if anyone tells her that Dad is gone. Since being diagnosed with AD, when my mother experiences something "traumatic" in her life, she just advances further into oblivion. I don't want to see her grieve over and over if I have to tell her over and over that her husband is dead. And the same goes if my mother dies before my dad. I have no intentions of telling him that she is gone. I don't want to see him cry...if the news will even penetrate at all what little is left of his brain.

Alzadmin answered...

As an Assisted Living administrator and the son of a mother who died of Alzheimer's I usually counsel my families, if asked, not to tell a loved one of a death if they are beyond the early stages of the disease. Memory is a strong tool in the healthy grief/mourning process and those with Alzheimer's do no have this tool. Victims of Alzheimer's can become depressed over the death of a loved one and not be equipped to recover.

The knowledge is rarely of any positive use to them.

Zychick answered...

My mother, 100, was the 5th of 7 and only one left. She lives in a board and care home, has recently been diagnosed with vascular dementia, and gets things and people mixed up a lot. But usually she is fairly alert even if confused. Her sister, 95, the youngest of 7, died a week ago. I never considered not telling my mom, though I was concerned about how she would take the news. She was okay with it, though sad. We looked through lots of pictures. (Funeral was out of town.) The rest of the week she hasn't even mentioned my aunt.

After this experience and reading this article and the responses, I think there is no one answer. People have to use some judgment, keeping in mind the situation and personality of the person with dementia whether to tell or not. To choose not to tell because it would be easier on the messenger sounds like a cop-out.

A fellow caregiver answered...

Although my father died with my mother present,she forgot withing minutes of his passing. She had asked on numerous occasions where her husband was, and was told once again that he had died. After going through the process of anger towards family members for "not telling" her, and the uncontrolable sobbing, it was decided that her just went away with his church. It is too difficult to continue telling her of her loss and seeing the sadness she presents and also the setback of her dementia. As a family, we decided to just keep telling her her husband is away.

Ennaid answered...

I didn't tell my severly demented mother (vascular dementia) when her companion died after they'd been separated for 2 years due to their mutual mental decline. I couldn't see what benefit would come from it. He wasn't on her mind anymore, so why put him there with sadness? So no, in her place, I wouldn't want to know if someone I'd loved had died. She actually got mad at me a few years earlier for telling her about the death of someone she'd been fond of many years earlier. "I didn't need to know that," she scolded. "I didn't need to know that at all. I could have gone happily on, not knowing that."

Kirn answered...

My mother is in the early stages of Severe Alzheimer's. She asks over and over about her parents, my dad, and my brother, all deceased. When I explain they're gone (humorously sometimes "that's why so-and-so hasn't visited you) she is more concerned that she can't remember this than any experience of loss or grief. I've decided now to simply answer that they're away at the moment and will visit later. Mom is already aware that she's confused - I don't see any reason to add to that. Yes, she has the right to know, but it she can't remember what's the point?

Oops - very sorry - didn't realize until too late this question was directed at the Early stages of Alzheimer's

Sharonsgirl answered...

I very much disagree with the "expert" answer. My sister went to heaven 6 months ago and we did not tell my mom. She wouldn't remember and she doesn't have any skills to cope. The thought of her being sad and not knowing why was too much for me. She never asks where my sister is, even if she's looking at a picture of her. She never asks at family functions when my sister's husband and kids are there, where my sister is. Nothing would be gained by breaking this devastating news to her. Nothing.

Jenjo answered...

Obviously, it's a personal choice and decision. My mother passed two days ago and I'm devastated. She went peacefully and still knew us until she had morphine the last few days. She and Daddy had been married 59 years. I took him to see her (she was in skilled nursing, he is in a memory care facility) a few weeks ago and had a nice visit. But when we left, he seemed puzzled that the woman he had just seen had his last name. Early in his Alzheimer's, he talked about her all the time. Now, he often thinks I - or another memory care resident - is his wife. I absolutely agree that in a perfect world I would never hold back from a couple joined at the hip until Alzheimer's came along. But I also won't risk his physical health (leukemia, and he just began eating again) by taking a chance that he will take the news well and never mention it again. Mom's hospice caregivers and the nurses who see Daddy every day said it's their opinion that telling him would do more harm than good. He always told her "I've taken care of you for 59 years, I'm not going to stop now." What if he feels it's his fault that he didn't protect her? If he asks about her one day, I'll decide what I believe is best for him. Blessedly, my siblings and I all agreed that , as hard as their being separated is, for now he is better not knowing. For the record, I also don't believe in bringing small children to funerals. We're all different.