The burden of care

The burden of care

Family or friends who act as unpaid carers for elderly people are much more more likely to suffer emotional, physical and financial distress than professionals, according to new research.

The study suggests such volunteers are three times more likely to be less productive at work due to distraction and fatigue.

Researchers say this is a significant and often unrecognised cost borne by employers.

The study, published in the journal JAMA Internal Medicine, found that unpaid carers who assist co-ordinating doctor appointments and managing medication are most at risk.

They are much more susceptible to being less productive at work because of distraction and fatigue – a phenomenon known as “presenteeism” – than carers who don’t provide this type of support.

Doctor Jennifer Wolff, of Johns Hopkins Bloomberg School of Public Health in the US, said: “A lot of work goes into managing the care of people with complex health needs, and this work is borne not only by health care providers and patients, but also by their families.

“Little attention has been directed at understanding the extent of or consequences for this unpaid and invisible workforce that is vital to the care of the chronically ill. Our study aims to do that.”

Researchers estimate that around 14.7 million unpaid caregivers, most of them family, assist 7.7 million older adults in the United States.

Of those, 6.5 million caregivers provide substantial help with health care, 4.4 million provide some help and 3.8 million provide no help.

Examining data from 1,739 family and unpaid caregivers of 1,171 older adults, they found those who provide substantial help with health care activities were significantly more likely to live with the older adult they care for than those who did not help with these activities.

Researchers also found they were also more likely to report caregiving-related emotional difficulty (34.3% vs. 14.6%), physical difficulty (21.6 % vs. 5.7 %) and financial difficulty (23% vs. 6.7 %).

Caregivers who provide substantial help with health care needs also provided care of greater intensity (28.1 hours per week vs. 8.3 hours per week).

Dr Wolff says the caregiver is often the linchpin in the health care of older adults, making sure that treatment plans developed by physicians are being carried out at home, but their role often goes unrecognized in the American health care system.

She said health care providers can do a better job of involving caregivers when they accompany patients to medical appointments, recognizing their key roles and more purposefully engaging them.

Dr Wolff added: “The more we know about this invisible workforce, the better we will be able to develop strategies that include unpaid caregivers as part of patients’ health care team.”