A recent study revealed the factors determining carer burden lay not in the severity of dementia among sufferers, but instead on caregivers’ feelings about themselves.
Interviewing 74 primary carers of dementia sufferers, the British and Australian team discovered a caregiver’s sense of role captivity – that is, a sense of feeling trapped in the role and being unable to pursue personal interests – as the greatest factor on carer burden.
Adverse life events such as death of friends or relatives and work or money problems increased carer burden as did a poor relationship between the caregiver and the dementia sufferer.
Finally, they found those who had a lower sense of confidence in their ability to provide care also contributed to burden.
Dr Corinne Lendon, Head of the Molecular Psychiatry Group at the Queensland Institute of Medical Research said the team hopes to improve the well being of both dementia sufferers and their carers.
“We wanted to find out the relative contribution of major factors that make caring for someone with dementia so hard on the well being of carers,” Dr Lendon said.
“We hope that this study will lead to early intervention to help carers’ challenges in order to reduce the burden of caring and where possible delay dementia sufferers’ institutionalisation.”
Dr Lendon and her colleagues at the University of Birmingham suggested help could be in the form of a systematic approach that includes assessing carer needs early on at the time of diagnosis of dementia in the person they care for, providing training to boost confidence and competence, as well as enabling carers time to pursue activities outside the caring role.
Experts predict by the year 2025, 50 million people around the world will be affected by dementia.
“There is currently no cure for dementia and any treatments to lessen the symptoms are limited and short lived,” added Dr Lendon.
“If we can equip caregivers with the skills, confidence and support that they need to fulfil their roles, then we can not only improve the well being of both parties, but also help reduce the burden on the health system.”