The death of a loved one is devastating for everyone involved but it is a special challenge when somebody in the family has dementia. It can be difficult for family members to decide when and how to share the sad news with the person. And what should you do when they forget it again?
The first and most important aspect to remember is that a person with dementia still has their emotional memory intact. This means that even though they might not be able to recall particular events, they do remember how a person makes them feel. However, even despite having a strong emotional memory, their ability to deal with emotions rationally, logically, and reasonably can be greatly impacted by dementia.
Should you tell them about the passing of a loved one?
If somebody close to the person with dementia has passed away, you may be wondering whether to tell them in the first place. Remember that for some people, the loss of a pet can be equally devastating news. Some people may want to avoid sharing sad news because they don’t want to cause unnecessary distress, or they don’t want the person with dementia to revisit their grief all over again.
On the other hand, seeing a household grieving without being told why is something the person with dementia can pick up on and become distressed by. In some cases, when the disease has progressed and it becomes too difficult for a person with dementia to understand, remember, or process the knowledge of death, it might be okay not to say anything.
However, most dementia experts agree that the better approach is to be candid. Everyone deserves the right to know when someone they genuinely care about has passed away, regardless of mental state. Keep in mind that there is no one-size-fits-all solution that works for every person and situation. Always do what you think is best for your loved one with dementia based on what you know about that individual.
How to Break the News
When sharing emotional news with a person living with dementia, it’s important to know that they might not be able to process the information logically, so their reaction might be entirely different to what you expect. Therefore, you need to approach loss and grief with greater awareness.
You may find the following tips useful when informing a person with dementia about the loss of a loved one or a pet:
- Generally speaking, tell them the news as soon as possible. A person with dementia can sense that something is wrong and will need information to understand.
- If you are too emotional to talk to them, find somebody else. A friend or healthcare professional could help.
- Choose the right time to talk. Try to find a time that’s best for your loved one—ideally when they’re well-rested.
- Explain what has happened clearly and simply. Use short and simple sentences and try to avoid euphemisms like ‘losing’ someone or saying they have ‘gone to sleep’, as these can be misunderstood. Use clear words.
- Avoid giving too many details. This may be too overwhelming for them.
- Try not to protect the person from the truth. Try to avoid suggesting that the person who has passed away may just be gone awhile and may return later.
- Support them with physical touch. Hold or rub their hand or hug them if appropriate.
- Make sure that you are supported as well. If you’re grieving as well, find comfort in the company of others.
How to Help a Person with Dementia Cope with Grief
Another difficult decision arises when a person with dementia is unable to retain the sad news. Following the loss of a loved one, grief is natural and normal, but dementia complicates this process. People without dementia often accept the reality of the loss, learn to live with it and with time, transform the pain into beloved memories.
Note that for someone with dementia, this process is often impossible. They may be agitated and restless. They can confuse one loss with another. They might not say anything at all. Whether or not you should continue to remind a person with dementia that their loved one has passed away entirely depends on the situation, on how advanced their illness is, and on your relationship with them.
Here are some tips that may help you when you have to retell sorrowful news:
Be patient. After you share the news, continue to talk about the deceased person in the past tense.
Expect to hear an expression of grief or crying. These are normal human reactions. Respond to a fresh rekindling of grief with the same empathy and love as you would for a new grief.
Brace yourself for no response. Reminded of a death, some people may say very little or nothing at all. Don’t misconstrue these responses to mean that they didn’t love the person. This may be the only response they can give and that’s okay.
Turn the fact of the death into an opportunity for fond reminiscing. Revisiting a death all over again won’t be easy. Try to focus on cherished memories. Share them with your loved one.
In some situations, you can consider distractions or appropriate re-directions. This might be kindest if, for instance, the person wants to contact a long-gone relative, wants to buy them something, or can’t seem to process the reality of a death.
Ultimately, decide what’s best in your particular case. If questions are persistent or if the person becomes too agitated every time the topic comes up, some families may find it easier to tell a therapeutic lie meaning you aren’t completely honest with the person with dementia based on their health care needs. If dementia advances, it’s possible to gloss over or avoid the topic entirely. The decision is yours to make and what you think is best at that moment.
When taking care of a loved one, it can be difficult to figure out what you can manage yourself and when external help is needed. Take our 5 Minute Home Care quiz to assess key warning signs and confidently take the next step to care for your loved one with dementia.
Join our care community to receive weekly educational resources and updates!
