Caring for caregivers

Posted by jchoules

23 February 2017

The chances are that you are a caregiver or will be in the future. Three in five of us will be a caregiver at some point in our lives supporting at least one person with a long-term condition. A caregiver (or carer) is defined by the Carers Trust as: “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support”. According to Carers UK’s state of Caring 2016 report, an estimated 6.8 million unpaid caregivers provide care in the UK and this is expected to rise to 9 million by 2037. The 2011 Census revealed that there were over 1.8m caregivers aged 60 and over in England including 151,674 between ages 80–84 and 87,346 over 85. While many caregivers provide care willingly this is not the retirement they expected. In the UK, caregivers have an estimated worth of £132 billion to the economy per year, however, like the statistics above, this is likely to be under-estimated as many caregivers do recognise their role as caregivers and collecting reliable data is a challenge.Caregivers can have an important role in supporting self-management of chronic disease. The role includes, for example, supporting medicines management, promoting physical activity, monitoring and managing symptoms in the context of daily life and taking appropriate action, supporting household activities and emotional support. It is easy to think in terms of a sick person and a caregiver as a well person, however, in reality, many caregivers have chronic diseases of their own and experience additional physical and mental ill-health as a result of their caregiving role.

The 2014 Care Act, enacted in April 2015 specifies that caregivers have a right to have their needs assessed and a care plan of action provided. While the act provides the legal framework for caregivers, there was little specific government funding provided to support caregivers. Sadly, the Carers Trust’s One Year On report shows that many caregivers have not yet noticed a difference as a result of the Act. There is hope, however; as the NHS England Carers Toolkit provides principles for caring for caregivers and there are a few examples of ‘good practice’ but as yet there is little evidence for what works for caregivers.

There have been calls for caregivers to be involved in the development of health care interventions (Al-Janabi, 2016). Researchers should also then evaluate the impact of the interventions on caregivers. One intervention that included caregivers in heart failure self-management is the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) Intervention funded through an NIHR programme grant *, (Chief Investigators Professor Rod Taylor and Associate Professor Hayes Dalal). The REACH-HF team led by Associate Professor Colin Greaves and Dr Jenny Wingham has worked with patients and caregivers living with heart failure and NHS Lothian Heart Manual Office to design a nurse-facilitated home-based self-management intervention for patients and caregivers. The REACH-HF intervention is currently being evaluated in two parallel randomised controlled trials having recruited 266 patients and 118 caregivers.

Whatever the outcome of the results of REACH-HF, there is scope for further caregiver research in heart failure and other chronic diseases especially in the field of multi-morbidity. The time of hospital discharge is particularly a time of stress for caregivers. As yet however, there are few interventions that have successfully reduced the sense of caregiver burden and empowered caregivers to support self-management. The REACH-HF team are pleased to welcome Miriam Noonan, a PhD student to work with Jenny on future caregiver work.

If you are a caregiver or perhaps think you might be and have concerns then there is valuable advice provided by Carers UK and Carers Trust.

Carers UK
• https://www.carersuk.org

Carers Trust
 https://carers.org

Jenny Wingham
Hon Clinical Senior Lecturer, Primary Care
Senior Clinical Researcher, Royal Cornwall Hospitals NHS Trust

Miriam Noonan
PhD Student, Primary Care
 This blog presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12004) The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.