The death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?
Coping With Losses
People with dementia have had many “little deaths” in the course of their disease — things like losing their independence and the ability to drive, read, cook, or enjoy hobbies. Memories and relationships are huge losses. These losses are stressful for people with dementia and their families.
How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving
For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.” For most, the pain of the loss can transform into beloved memories. For someone with dementia this process is often impossible.
People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one — and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.
Telling About a Death
Here are some hints for telling a person with dementia about a death:
- Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
- If you are too emotional to talk to them, find someone else — maybe a friend or healthcare professional.
- Choose a time to talk when the person with dementia is well rested.
- Use short, simple sentences. Don’t give too many details; this may overwhelm them.
- Answer questions as honestly as possible.
- Use clear words like “died” instead of “passed away” or “at peace now.”
- Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
- You can support them with physical touch, such as a hug or holding hands.
- Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
- Plan for someone to be with the person during services who can also take them out if they become agitated.
Here are some ideas of ways to help the person with dementia accept the death:
- Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
- Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
- Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.
If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:
- Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern, or confusion. You can respond to what you see:
- “You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
- “You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
- Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
- Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
- Use distraction only when other ways of dealing with their grief are not working.
Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.
You can be most supportive to the person with dementia if you also take care of your own needs and get support. We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.