Grief Responses of Older Adults With Dementia, Alzheimer’s (Research, Hospice Story)

Dementia can have a profound effect on how someone responds to the death of a loved one. Each person with dementia is unique with a response cloaked in a lack of memory layer different from someone without dementia.

Healthcare workers in long-term care often have residents whose primary loved ones have died. Family members and others also experience this as caregivers. The following common questions are of concern to many people regarding death of a loved one of someone with dementia:

1)   Should the person with dementia be told about the death? (In most cases they should be told, but preparations should be made for the kind of responses they may have after receiving that information.)

2)   How should the person be told?

3)   How will the person’s response impact the family?

Grief response researchers explored these questions in two focus groups. One group consisted of family members, and the other group consisted of an interdisciplinary group of long-term care healthcare workers. These are the three resident response patterns that became evident:

1)   Self-threat (concern about who will take care of them)

2)   Substitution (confusion over who actually died)

3)   Metaphone (substitution of loss of dead person with an object or unrelated item)

This true story from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains how one of my hospice patients who had dementia dealt with her grief during a conversation we had:

“Is your mother alive?” Mamie asked me one day.

“No, she died a few years ago in her eighties,” I responded.

“You know, you can still be with her and talk to her if you want to.”

“Oh, I know we can still communicate.”

“No, I mean for real. You can be with her in person. Just get her clothes together and her shoes. Don’t forget her coat. They say it’s cold outside. Take them to the cemetery where she’s buried. Just set them on top of her grave and wait. She’ll rise out of her grave and put them on. Then you can take her home with you. In every way, she’ll be the same person you knew. Other people won’t be able to see her, but you will.”

“Hmm. I’ve never heard that before.”

“Most people haven’t. I know about it because I did it with my two grown sons. They were both murdered on the same day in a drive-by shooting. I didn’t know how I would get through the pain. Finally, I took their clothes to the cemetery and did what I just told you. Both of them came home with me. It was the best day of my life. I got my sons back.” Satisfied, she smiled.

Some people will dismiss this story as crazed comments of a woman with dementia. But, if you really listen, you’ll hear the magnificent empowerment in her words.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at booksellers such as Amazon.com.

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