Carers overwhelmed by guilt
Caring Times, September 2012
A study by national disability charity Vitalise says family carers experience huge feelings of guilt at the prospect of sending their disabled, frail or elderly loved ones into residential care, even for just a few days. In the wake of care services minister Paul Burstow’s promise to provide more support for unpaid family carers to gain access to respite breaks, Vitalise has found that worries over the quality of residential care is preventing family carers from taking up respite opportunities.
The study, which collated the findings of research conducted by various organisations over the past five years, found that 6 out of 10 carers (57%) felt guilty about needing to use respite care and that worries about the quality of the respite experience were a significant barrier. Significantly, the study also found that 7 out of 10 carers surveyed felt that a break from caring, even for a few days, was ‘important’ or ‘very important’ and that carers want more choice and control over their respite care and short breaks.
Vitalise sees this research as evidence that more needs to be done to improve not only the quality of respite care for disabled and older people, but also the range of respite experiences available. Currently, most respite places for disabled or older people are spare beds in nursing homes, where the visitor has to fit into the homes’ fixed routines. This often results in considerable feelings of guilt and worry on the part of the carer.
Vitalise warns that unless the causes of carers’ negative feelings about respite care are addressed, many carers will be too worried to consider taking any respite from caring at all and will end up putting their own health – and that of the person they care for – at risk.
As the population ages and more people than ever before are in need of respite care, the charity is urging respite service providers to pay more attention to the fundamental issues of quality and choice in respite care in order to avert a worsening problem. Vitalise chief executive Chris Simmonds said the study showed that family carers had no confidence in the quality or suitability of the respite care on offer.
“This is the real issue here,” said Mr Simmonds.
“The sad fact is that carers’ fears are quite justified. In many cases respite care amounts to little more than warehousing for disabled or older people, so it is not surprising that carers would rather struggle on at home, risking their own health in the process.
“Vitalise has been supporting families affected by disability for nearly 50 years and what we have found is that these worries and guilty feelings are allayed if the focus is on providing excellent quality of care combined with good food, entertainment, new experiences and most importantly, the chance to enjoy the company of others.
“Unless the fundamental issue of quality in respite care is addressed, this problem will only get worse. Access to regular, good quality respite breaks for people with disabilities and those who care for them should not be considered a luxury but an absolute essential in enabling families affected by disability to carry on coping.”