Alzheimer’s study: grief is heaviest burden for caregivers

The hardest part of caring for loved ones with Alzheimer’s-type disorders is not the everyday practical challenge, but rather the emotional impact of losing the patients’ support and companionship as the disease robs them of their mind, according to a new caregiver study.

Associate Professor Jacquelyn Frank of the University of Indianapolis Center for Aging & Community gathered responses from more than 400 dementia caregivers in Indiana, most of them spouses and adult children of Alzheimer’s patients. More than 80% of them touched on a common theme: “letting go of the person we used to know,”  or “watching your loved one slip away and forget who people are”.

“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,” Ass Prof Frank says.

She hopes the study results can be used to help design new support and intervention programs for dementia caregivers. Even friends and family don’t always understand that dementia poses unique challenges, she says, and that adds to the sense of isolation and hopelessness many caregivers already feel.

“These people need to know that feelings of grief and loss are normal, and that other caregivers face the same emotional difficulties.”

She says the results point toward new avenues of service that could be provided by community-based support agencies.