Changing ideas about care and caring

Looking at the existing evidence and beginning to talk to families, we have noticed that it can be difficult to talk about how and why carers experience harm from the older person for whom they care. This may reflect the sensitivity of the issue and it hidden nature.  It may also reflect that it is a complicated problem and one that brings up uncomfortable questions and feelings that are hard to explain.  We think that it might be useful to look more carefully at common ways of defining and identify ‘caring’ and to think about how they help and prevent people sharing and making sense of harmful experiences within families.

 

Public awareness and understanding of the role and contribution of carers has changed significantly over the past thirty years.  Advocacy and campaigning groups have played an important role in highlighting the practical, social and emotional nature of caring and its integral role in the functioning of many areas of economic, social and family life.  Research has also played a role in demonstrating the impact of caring to caregivers’ health and well-being.  More recently, research has also explored the benefits of caring as well as looking at the way in which families make decisions about caring and changing relationships.  In part influenced by these efforts, there have been changes in legislation and policy in many countries to better recognise the role of carers.  In the UK, this includes carers having a right to have their needs assessed and to access advice.

 

For some carers, however, these changes in recognition and awareness have not made a significant impact on their lives.  Many carers report that they face ongoing struggles to have their needs met and voices heard.  It is also suggested by some carers and researchers that there remains a high degree of expectation and obligation placed on carers.  The ideas of carers as ‘angels’ and ‘saviours’ may be positive and well-intended; however, it can also reflect a failure to see carers as individuals with lives and needs beyond providing and responding to their family member with an illness or disability.

 

Understanding care as either a ‘burden’ or as a ‘gift’ can make it difficult to explore more complicated and changing aspects of carers’ lives.  This might contribute to a difficulty seeing and talking about how family members’ commitment, obligation and love for their family member co-exist with difficult experiences such as being threatened, ignored or hurt. Family members affected by illness and disability may or may not ‘intend’ to harm those who care for them and their condition may well be affecting their behaviour.  Whilst this is important to understand it should not prevent people recognising and seeking to understand the impact of this harmful behaviour and supporting both carers and their wider families.