Alzheimer's Study Finds Grief is the Heaviest Burden for Caregivers

June 27, 2011

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 faculties, according to research at the University of Indianapolis.

"You are losing and grieving while you're providing the care, because 'Charlie' isn't 'Charlie' anymore," says Associate Professor Jacquelyn Frank of the University's Center for Aging & Community. She says the results point toward new avenues of service that could be provided by community-based support agencies, such as Right at Home.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer's patients. She is continuing to analyze data from the survey's 100-plus items, but 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.

According to Right at Home's Dan Parker, it is important for the caregiver to take a "time out" or a "respite" while experiencing anticipatory grief and ambiguous loss.

"Many times family caregivers of loves ones may struggle themselves and need to take a few hours a week to get away - be it a movie, an outing, or attend an event with a friend - to remain balanced in their lives and not have the enormity of stress overtake their own health."

The Indiana survey was administered at public events and through the assistance of the Greater Indiana Chapter of the Alzheimer's Association. Most responses to the "biggest barrier" question fell into five categories, including:

* The patient's difficult behavior and need for hands-on care

*Shortfalls in community and financial support

*Difficulties in communicating with the patient, other relatives and medical professionals.

*The caregiver's loss of personal time and freedom.

The overwhelming sentiment among the residents, however, involved the personal grief and loss they were experiencing in the midst of their many practical concerns. To Frank's surprise, many respondents sent personal notes and letters along with the questionaire, noting that they appreciated the opportunity to bring their feelings into the open.

"Fortunately, Right at Home is able to assist caregivers by providing care options - including hourly for a short break - or so the caregiver could attend local Alzheimer's Support Groups, such as those held by the Alzheimer's Society," explained Parker, "It really helps caregivers to share in their own experiences and to understand that they are not alone."

Professor Frank hopes the study results can be used to help design new support and intervention programs, such as the respite provided care of Right at Home, for dementia caregivers.

Friends and even family members sometimes do not always understand that dementia poses unique challenges, and that adds to the sense of isolation and hopelessness many caregivers already feel. Frank added: "These people need to know that feelings of grief and loss are normal, and that other caregivers face the same emotional difficulties."