Anticipatory Grief Prevalent Among Dementia Caregivers

Professor Jacquelyn Frank, of the University of Indianapolis has examined the challenges faced by caregivers of dementia patients.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients . . . she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

Hospice Foundation of America's 2007 book, Living With Grief: Before and After the Death, dealt with the concept of anticipatory grief.