The emotional strain – rather than hands-on care issues – is the most taxing aspect of caring for a person with Alzheimer’s disease.

That is the finding of a study conducted by researchers from the University of Indianapolis which has gathered responses from over 400 dementia carers – most of whom were the spouses and children of people living with Alzheimer’s disease.

Although they said it in different ways, more than 80 per cent of the respondents touched on a common theme in their responses to the question: “What would you say is the biggest barrier you have faced as a caregiver?”

The study’s leader Associate Professor Jacquelyn Frank said responses such as “letting go of the person we used to know,” or “watching your loved one slip away and forget who people are,” were typical answers.

The overwhelming sentiment among the respondents was one of personal grief and loss.

“You are losing and grieving while you’re providing the care, because Charlie isn’t Charlie anymore,” she said.

The comments draw attention to the concepts of ‘anticipatory grief’ – the pain of losing a loved one before they actually die – and ‘ambiguous loss’ – the feeling that comes from interacting with a person who is physically alive but no longer seems present.

Associate Professor Frank said it was not surprising that such effects were common among dementia carers, but noted that this study was 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.

She hopes the study results can be used to help design new support and intervention programs for dementia carers.

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