Sharing A Death With Someone With Dementia
Here are a few suggestions for delivering bad news to someone with dementia:
- Use short, simple sentences and clear language. For example, say the person has died instead of using euphemisms like passed away.
- Choose a time when the individual is well rested. Morning tends to be a good time for activities and delivering important information.
What If They Forget
In later stages of dementia, an individual may forget the death has occurred and need to be told a second or third time.
I recently visited the wife of a patient who had passed away, shares Bereavement Coordinator David Stevenson, M.Div of Crossroads Hospice & Palliative Care. In our first few visits, she would tell me that her husband had passed away and get very emotional as though it had just occurred. But over time, she became more accepting and now we can talk about her memories of him without it upsetting her.
However, if the individual with dementia has been told several times and is just not retaining this information, it is okay to stop breaking the bad news.
You dont want to continuously retraumatize someone who has that level of deficit, explains Crossroads Support Services Director Jeanne Morrison. If they demonstrate that they cant hold on the information and wont remember even a few hours later, you can allow them to think that their loved one is out golfing or shopping or doing some other activity they enjoyed.
Or Does It Make Sense To Tell Them At All
My moms best friends husband died recently. My mom had known him for more than 60 years, but I debated whether to tell her. Shes had dementia since the fall of 2012 and retains almost no new information.
We call her friend often and my mom asks after her husbandan old memory the disease hasnt stolen from her. I decided she should know.
I sat down next to my mom in the memory care unit where she lives and said, We need to call your friend. You know her husband was not well for some time. He died yesterday. My mom was shocked and readily accepted my offer to call her friend on my phone.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound?
The experience made me wonder if I made the right choice to tell her.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound? She had forgotten that she spoke with her friend, but she remembered that her husband had died.
The experience made me wonder if I made the right choice to tell her and what I should do if she forgets in the future. For guidance, I turned to Stephanie Rohlfs-Young, director of volunteer programs at the Alzheimers Association. The following is an excerpt of our conversation, edited for clarity and length.
MemoryWell: How should you approach it and what should you say?
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Helping The Person With Dementia Grieve After The Death Of A Loved One
Caregivers and family members often ask whether they should tell a loved one with Alzheimers Disease or other dementia about a death in the family, and how they can help them grieve. Although much has been written about the profound grief of caregivers and other family members throughout the course of the successive losses associated with dementia, surprisingly little has been written about bereavement in the dementia patient.
The loss in cognition of a person with dementia does not mean that the person does not feel the loss somatically or emotionally. Although the individual might not be aware cognitively of the loss, he or she may have a vague sense that something isnt right. Just like a child knows when a loved one is not around, the person with dementia may sense a loss of contact with a loved one in his or her body. The concept of death may lack meaning for them, but they know or rather feel that something is amiss. People with dementia thus have the capacity to grieve. Learning their language and sense of reality is important in helping them grieve a loss.
The following are some suggestions for communicating the death of a loved one to a person with dementia, and helping him or her grieve:
- Tell the person with dementia once that a loved one has died and assure him or her that both he or she and the deceased are fine. It is respectful to tell the truth, and do so as simply and caringly as possible.
Why Do Dementia Patients Stop Talking
There are many signs that can tell you death is near for a dementia payment. Even though you may be prepared for the end, it is never easy. The ten signs that death is near include:
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Dont Say No Dont Or Cant
One of the biggest mistakes in dealing with patients and/or loved ones with memory loss is being negative and telling them that they cant do something. Words like no,” don’t, or can’t create resistance. This comes up regularly with family members when the patient and/or loved one might be still driving, and the caregiver and/or family member has made the decision to stop them from driving. One should never say, You can’t drive anymore. They can still technically drive , and they can get very combative when told no. A way to counter this is to say, I know you still can drive, that’s not even a question, but you know what happened the other day? I was out on the highway and this car cut me off, and I had to make a split-second decision it was really scary Its likely they will say, You know what? I’m having a little trouble with those decisions too. The issue isn’t the mechanical driving, it has more to do with comprehension, and many times this answer works much better than, You can’t drive anymore, which can be construed as confrontational.
You may find a patient and/or loved one up too early or confused about time. Instead of using messages such as, Youre up too early, you need to go to bed, try leading with statements such as, You know, I’m getting sleepy. Id like a little snack before I go to bed, and then gesture for the patient and/or loved one to sit with you.
How Do You Know When Someone Is Beginning Their Dying Process
There are certain signs when illness or old age has tipped into a preparation for death.
The dying may feel compelled to resolve unfinishedbusiness End-of-life research studies show that the dying are often called by an almost organic process to confront and resolve unfinished issues from their past, particularly with estranged family members.
Special requests Sometimes people may want to do something special such as visit a particular site, or be surrounded by their favourite flowers, or to hear certain music, or to have family photographs near, or to make contact again with someone who has been important in their lives.
Their external world begins to diminish The draw of the world at large no longer appeals and even engaging with family matters no longer seems important. Rather the dying person prefers to remain in a safe, quiet place, often in bed.
Physical changes These changes are part of the dying process. The skin can become paper-thin and pale, with dark liver spots appearing on hands, feet and face. Hair can also thin and the person may shrink in stature. Teeth can discolour or develop dark stains.
Appetite reduces the body knows it no longer needs fuel to keep it going, and those who are dying often lose their desire to eat or drink. They can begin to lose weight, sometimes quite rapidly. Its important not to force food or drink onto someone who no longer wants it. But do take guidance from medical staff and end of life carers.
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Distraction: Singing & Reading
For some people, a distraction can be a good way to get the chore done. Its kind of a different communication style that helps in distressing situations. For example, if a patient and/or loved one likes singing, starting him/her singing could allow the caregiver and/or family member to ease into bathing time with a gesture.
Singing actually can help tremendously with memory loss patients and/or loved ones who can no longer talk, or have trouble finding words to form sentences, because they are usually still able to sing a song. Often, they can remember the lyrics of a song from beginning to end.
Many patients and/or loved ones can still read as well. Singing and reading can give the person great joy and hearing a loved ones voice can very comforting for family members.
Breaking Bad News To Someone With Dementia
Its hard for anyone to receive difficult news, but when youre breaking bad news to someone with dementia, it can be especially heartbreaking. Families often struggle with how to break bad news to someone with dementia. This is particularly challenging with situations like the death of a loved one, and made even more difficult for family members if their loved one with dementia forgets that information and have to be told more than once.
When breaking bad news like a death to someone with dementia, it is important for family members to consider what stage of dementia their loved one is in and their relationship to the deceased. If the individual was not often in contact with the individual, it may be kindest to not share the news. If it is someone more meaningful, they may already sense that something is wrong.
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Monitor New And Worsening Behavioral Symptoms
Too often family caregivers get caught up in trying to determine what is normal for their loved ones. Normalcy can be used to describe a seniors mood, behavior, appetite, sleep schedule, symptoms and much more. Establishing a baseline for a loved ones mental and physical health is very useful for quickly identifying changes, but trying to make comparisons with other patients and textbook definitions can be an exercise in futility. This is especially true when it comes to caring for seniors with Alzheimers disease and other forms of dementia. Normal becomes an ever-changing state that is different for every single patient. In some cases, accepting certain behaviors as normal can actually cause us to overlook important red flags.
Because these behaviors may be caused by the disease itself and/or exacerbated by additional contributing factors, it is important to carefully document any new or changing symptoms and discuss them with a doctor as soon as possible. Certain environmental factors, dehydration, lack of sleep, changes in or reactions to medication, and even infection can contribute to hallucinations and delusions.
Things Not To Say To Someone With Dementia
Speaking to an elderly loved one with dementia can be difficult and emotionally draining. Alzheimers and dementia can lead to conversations that dont make sense, are inappropriate or uncomfortable, and may upset a family caregiver. However, over time, its important to adapt to the seniors behavior, and understand that their condition doesnt change who they are.
For senior caregivers, its important to always respond with patience. Here are some things to remember not to say to someone with dementia, and what you can say instead.
1. Youre wrong
For experienced caregivers, this one may seem evident. However, for someone who hasnt dealt with loss of cognitive function before, it can be hard to go along with something a loved one says that clearly isnt true. Theres no benefit to arguing, though, and its best to avoid upsetting a senior with dementia, who is already in a vulnerable emotional state due to confusion.
Instead, change the subject.
Its best to distract, not disagree. If an elderly loved one makes a wrong comment, dont try to fight them on it just change the subject and talk about something else ideally, something pleasant, to change their focus. There are plenty of things not to say to someone with dementia, but if theres one to remember, its anything that sounds like youre wrong.
2. Do you remember?
Instead, say: I remember
3. They passed away.
Instead
4. I told you
Instead, repeat what you said.
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Memory Loss Complicates The Grieving Process
Another difficult decision arises when the surviving spouse cannot retain the news. Grief is natural and normal following the loss of a loved one, but dementia complicates this process. Whether you continue to remind a dementia patient that their significant other has passed away is entirely up to you.
Different approaches work better for different people, depending on their cognitive abilities. For a parent who is in the beginning stages of the disease, it will likely sink in that their spouse is gone. Moderate impairment is more of a gray area. Perhaps reminding them for a few weeks afterward is a good place to start. If the person reacts intensely to this news each time and it affects their mood, behavior and health over the long term, then it may be wise to reconsider this approach after a certain trial period. Remember, you cant make a dementia patient remember something no matter how hard you try.
In the end, you know your loved one best and the choice is yours. I encourage caregivers to tell their family members the truth as much as possible. But if the loss of a spouse affects a dementia patients health and quality of life and hinders your ability to care for them, there should be no shame in trying everything you can to minimize their pain.
Dont Talk Down To Them
Caregivers and/or family members should never talk down to the individual with dementia and/or Alzheimer’s, and this especially includes baby talk, which doesn’t work neurologically . The fact that the patient and/or loved one is having problems with language does not mean that talking to them like a four-year-old is going to help. The communication style should still be to a respected, older adult.
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Listen To The Emotion Behind The Questions/words
Appreciate the fact that the person with dementia has emotional memory. Thus, dont dismiss it or underestimate its power. If the person who has died was active in the life of the person with dementia, we need to be honest about why that person is no longer here. Making up stories like hes at work, shes out right now, can leave the person with dementia expecting they are coming back and when they dont, this is more upsetting for them. So respect their right to know the truth.
Be honest but keep it simple. Use direct words and not a long explanation. If it is to initially announce that someone has died, have only one person do this task. Too many people explaining at the same time can confuse and overwhelm the person with dementia. Have one person explain that a loved one has died and offer the same comfort that you would offer if the person didnt have dementia. Gage how the person with dementia responds to see how much they are recognizing the death. Depending on where they are in the disease, they may grieve as expected or may appear more confused and continue to ask questions. Some may not react at all, again, depending on where they are in the disease process.
Read the emotion behind the words they say. Often after someone has died, the person with dementia will ask for them again and again hours, days, weeks after the death. They are unable to remember this new memory. But, they may be asking because they are worried about the person.
My Experience With Dementia And Grief
My struggle with this dilemma began when my father started receiving hospice care. At this point in my caregiving journey, both my parents had dementia and shared a room in a nursing home. For many years, they had lived in their own private rooms on the same floor, but the end was near for both of them. We felt they needed to be together during this time, and their money was nearly gone from the expense of two nursing home rooms.
At first, I did not want Mom to know that Dad was going on hospice care since I knew shed immediately think death. This correlation is what most people focus on, even though hospice services are a blessing for ailing loved ones and their families. However, I knew this news would be traumatic for Mom, who was already suffering from a great deal of physical pain and the effects of dementia. I wanted to spare her even more anguish.
The hospice staff kindly but firmly rejected my plan. Their chaplain handled informing Mom of the change to Dads care plan, and she was included in the services they offered. Of course, they were right to do this. It was painful for everyone involved, but these wonderful people walked us through each step.
I continued to talk Mom through it daily, since she kept forgetting that Dad was on hospice. Eventually, though, it did not matter. She just couldnt retain the information. Fortunately, she didnt dwell on the connotation with death, and she loved the extra attention she and Dad received from the hospice care team.
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