Caring for someone with heart failure

Available 24 hours a day or living 24 hours away – the carer of someone with heart failure comes in all guises. But where they are all the same is in the important role they play in helping someone with heart failure live with their condition.

Heart failure is complex. It is debilitating and potentially life-threatening. It causes the heart muscle to become stiff or weak, meaning it’s unable to pump enough blood to meet the demands of the body.¹ This leaves heart failure patients exhausted and short of breath, severely limiting the activities they are able to do.¹

Being a carer is not even really something I think of as a job, it's just a duty, it's what you do

The role of the carer

For carers like Jai, whose mother Cynthia has heart failure, the role of the carer morphs as his mother’s symptoms change. However, one near constant role of a carer is to always try and help the heart failure patient stay positive and have a can-do attitude. This can really help them to play an active role in their own condition. In fact, research shows that those who can adapt to their illness and take control of it have better outcomes and have a better quality of life.² Jai and his mother follow this advice and take an active role in her disease.

The impact of being a carer

We know that caring for someone with heart failure has a positive influence on heart failure outcomes.³ Improvements in quality of life of the patient, reduced hospitalizations and improved survival have all been seen in those with the support of carers. However, these positive influences are only achievable when the patient’s carer receives adequate support. Unfortunately, many carers do not receive the resources and support they require.

In a recent study, it was found that carers in general, and heart failure carers in particular, are an under-recognized group. Few carers (29%) felt they were supported by someone to balance their own wellbeing and ensure a good quality of life for themselves. This meant that heart failure caregivers scored their quality of life as six out of ten and 52% felt being a carer had affected their health.³

The study also found that 70% of carers helped with medical and nursing tasks such as managing medications or monitoring symptoms. However, only one in five (19%) felt they were prepared for these tasks by health care professionals.³

We believe it is vital the carers of patients with heart failure receive the help and support they require. This includes ensuring health care professionals engage, assess and support these carers as members of the heart failure care team, and acknowledge the critical role they play in the treatment plan for people with heart failure. We also know that carers need resources and support to prepare for their role and adapt their lives as a caregiver.

Heart failure patients have good and bad days, both physically and emotionally and although carers will always try to be as supportive as possible, they too will have good and bad days. It is critical that both patients and carers receive the support they require. If you are a carer for someone with heart failure – remember you are not alone.

Patient Perspectives

Living with HFpEF – a patient’s story