How to Tell Someone With Dementia About Loss in a Family

The loss or death of a family member is a most challenging time. If the death is unexpected, there may be unbearable grief. This loss can be even more difficult for someone with cognitive impairment. Therefore, how you inform someone with dementia of such a loss requires sensitivity and finesse based on that person’s unique circumstance.

Key takeaways:
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    The way you inform your loved one with dementia about a loss or death in the family will depend on their individual situation and level of comprehension.
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    Be prepared to repeat the news of the loss of a family member to your loved one with dementia with declining short term memory. Your loved one may experience new grief each time they are informed.
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    Suppose the repeated news of the loss of a family member causes intense grief or aggression in your loved one with more advanced dementia. In that case, you may consider using a diversion to spare them mental anguish.

The resulting grief may be short-lived in the case of advanced dementia, or it can be a repeated intense emotion. Some tips and directions to help you tailor this challenging task to your loved one’s situation may prove helpful.

What is grief?

Grief is a natural reaction to a loss that anyone and everyone can experience, regardless of their situation. Grief is personal, and grief is also universal. A loss may be a family death, a relationship breakdown, or a job loss. The previous connection to the loss may directly indicate the level of bereavement felt by that absence. However, the manifestation of grief varies from person to person. Grief can last from hours to days to years, and there is no rule for an appropriate duration of mourning.

Grief in dementia

Dementia is a progressive illness and informing the person about the loss of the loved one might depend on the stage of the illness.

Early stage of dementia

In the early stages of cognitive impairment or early dementia, a person may have the genuine insight and ability to understand the implications of a loss or death in the family. In this case, informing this person about the loss is advisable. In addition, providing the opportunity to work through the stages of grief and grieving will be a healthier process for this person.

Advanced stage of dementia

Since dementia is a progressive illness, as a person moves through the more advanced stages, the ability to process difficult news, such as a loss or death in the family, may require modified techniques. Therefore, being sensitive to this person’s baseline understanding and reaction history is imperative. For example, if there is a history of aggressive or responsive behaviors, gauging the level of information you provide will depend on the person’s reaction.

If appropriate, you may want to involve your loved one with dementia in some arrangements for the funeral service or celebration of life. Go through mementos and photo albums with them. Have continued conversations with them about the loved one who has died. This interaction will also act as a form of reminiscent therapy for them to relive some happy memories. Be prepared if there is a family history of trauma, as reminiscing may also stir up a negative emotional response.

Late stages of dementia

In the very late stages, the person with advanced dementia may not have the ability to understand the information shared with them. In this case, sharing the news of the death of a loved one may not be advisable. However, this would be a decision the person’s family would likely need to discuss together.

If repeating the news of loss to the person invokes a highly emotional response every time, consider another approach. For example, while providing information about the loss of a family or friend is advisable, this mental anguish may cause more pain each time they are informed. Some experts advise that if this is the response, perhaps after the second or third time, you may want to use a diversional technique to introduce another topic.

When, for example, a person asks where their spouse (who is deceased) is, you may tell them that they are out for now and then change the topic. Some refer to this as therapeutic fibbing, but it is not deceptive. When the brain of a person with dementia is not able to process painful information, it can cause extreme emotional pain and confusion. It is considered "kinder" not to explain the whole truth but to enter the person's reality.

10 tips for sharing difficult news

  • You may wish to contact the person's healthcare provider, who knows them well, for tips on delivering the news.
  • Choose a time of day when your loved one is well rested and "at their best".
  • Keep your language simple and direct. Give only a little information at a time since it can be overwhelming for your loved one to understand. For example, avoid using the phrase "passed away." Instead, tell the person that their loved one has "died".
  • Ensure a quiet environment when you have your discussion.
  • Be mindful of your loved one's body language and facial expressions during the encounter.
  • Provide plenty of time for the person's reaction and allow time to answer their questions.
  • Provide support and allow them to express their grief safely. Use phrases like "this must make you feel a little sad".
  • If appropriate, you may want to provide a physical connection, such as touching their hand or shoulder.
  • You may need to repeat the information during this meeting or at subsequent times, as they may have forgotten that you told them.
  • You may want to contact a counselor experienced in counseling people with a cognitive impairment to help your loved one walk through the grief reaction.

Informing a loved one with dementia about the loss of someone close to them can be a difficult task and could be an ongoing process. The key for you and other people close to your loved one is to be consistent in the method and handling of the topic. While each person and situation are unique, there is no “one size fits all” in the approach. However, being honest, empathetic, and showing vulnerability may comfort your loved one to feel they are not alone in their grief.

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