Caregivers and family members often ask whether they should tell a loved one with Alzheimer’s 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 isn’t 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.
- When telling him or her for the first time about the death, make sure there is enough time for the person to process this information to the best of his or her ability, and to cry or otherwise react. Being in a comfortable, quiet and familiar setting can be helpful for the dementia patient to process the information and feel safe to express his or her feelings.
- If he or she continues to ask “Where’s Mary?”, saying that Mary is dead will likely be incomprehensible and may actually re-traumatize him or her. Telling him or her each time that their loved one has died can be like hearing it for the first time over and over. It is best to simply say that Mary is not here now, and then ask questions to check the patient’s current reality and where he or she is in the memory process. Asking the individual where he or she thinks Mary is can be helpful in eliciting feelings.
- Explore what age the person believes he or she is in order to gauge what memories of the deceased he or she may have, and explore those memories as a way to bring the person who died to life as a source of comfort.
- Redirect the person from thinking to feeling. Language that elicits feelings instead of thoughts can be very helpful, since the person with dementia lives in the feeling rather than the thinking world. If the person with dementia asks “Is Mary dead?”, a helpful response might be “Yes, and she’s OK — what does it feel like to you that Mary’s not here?”
- Show him or her old pictures of the person who died that are contemporaneous with the state of their memory, and elicit memories and feelings in that way.
- Artwork can be a powerful way for the individual to express feelings of loss.
- Likewise, playing a favorite song can elicit feelings and memories, and can be a source of comfort.
- Perhaps most importantly, remember that the person with dementia has not “disappeared” — the core essence of who he or she is as a feeling, spiritual person is still there. As the title of Lisa Genova’s beautiful novel about a woman with dementia states, she is “Still Alice.” It is our job as professional and family caregivers to reach and communicate with that spiritual essence, whether through touch, life review, music, art, nature or whatever vehicle best reminds the person that it is safe for them to feel their loss and that they are okay.