Grief 'is the heaviest burden for carers of Alzheimer's patients'

"You are losing and grieving while you're providing the care, because Charlie isn't Charlie anymore," said Associate Professor Jacquelyn Frank from the University of Indianapolis, who led the research.

Professor Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer's patients.

They were asked: "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 per cent 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.

The survey that is central to the study was administered at public events and through the assistance of the Greater Indiana Chapter of the Alzheimer's Association.

The overwhelming sentiment among the respondents, involved the personal grief and loss they were experiencing in the midst of their many practical concerns.

To Professor Frank's surprise, many respondents sent personal notes and letters along with the questionnaire, noting that they appreciated the opportunity to bring their feelings into the open.

Professor Frank 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," Professor Frank said.