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Long-term experiences of violent, abusive, or harmful behaviour

 

For a small number of carers, experiences of violent, abusive, or harmful behaviour may have begun much earlier in their lives, before they took on a caring role and/ or before their family member reached later life.  This can be the case for both people looking after their intimate partner and for adult children now looking after an older parent. For some people, the experience of illness and the role of cared-for and care-giver may make little difference to long-term patterns of abusive and/ or difficult behaviour between family members. For others, when a family member becomes ill or disabled, the balance of responsibility and dependency between them alters.  It is commonly the case that the person with health needs becomes more reliant on their family carer, and, in this way, less independent and autonomous.  Sometimes this cane make them more vulnerable to abusive or exploitative behaviour on the part of the carer.

 

However, for some families, the onset of illness brings about stress, distress, and difficulties making the transition to a new role or way of life.  This can compound patterns of already difficult and possibly abusive behaviour.  Some people may become more challenging or controlling as a way of coping with the unpredictability or disabling effects of their illness.  Other people may ‘take out’ their pain and frustration on those who are close to them and this is more likely if people have had long-term problems managing their feelings and maintaining healthy relationships with their partners or family members. The behaviour of the older person may or may not be intentional in nature.  However, it is important to recognise that carers in these situations may feel a strong sense of loyalty and responsibility towards their family member, both to stay with them and to care for them because they are now ill or disabled, regardless of the impact of their behaviour.  These carers may, unfortunately, actually be at most risk of serious or extreme behaviour because they have already ‘adapted’ or ‘tolerated’ difficult and harmful behaviour.  They may also experience the effects of the long-term, or cumulative, harmful behaviour.  It is likely patterns of long-term abusive, violent, or abusive behaviour affect a small number of families caring for older people. However, these may be some of the most difficult and serious situations and those most likely to remain hidden.

 

If you would like to find out more about wider issues relating to domestic and family abuse of older people (who may or may not be carers), you may find the information and resources on the Safe Lives site useful: http://www.safelives.org.uk/spotlight-1-older-people-and-domestic-abuse

Research about, and with, carers

Developing good quality knowledge through research and discussion can be critical in bringing about changes for carers at a political and social level. Research can also play a crucial role improving the quality of advice and information given to carers and families.  In turn, this informs how people care and the decisions that they make about looking after a family member. However, there is criticism that some academic research does not focus enough on developing partnerships with carers and families. This can lead to research staying ‘on the shelf’ and not used to its full potential; similarly, this may result in research questions and research projects that do not reflect the priorities of carers and professionals.

 

There is, then, a need for researchers to be creative about how they work with families and carers, and, at times, for them to challenge ‘traditional’ research methods and ways of thinking about how to build and share knowledge. Over the last fifteen years, inclusive and participatory research has moved from a specialist to a mainstream practice in health and social research.  In broad terms, participatory approaches commit to working in partnership with non-academic stakeholders (e.g. patients, carers, and families) and to share key aspects of decision-making and responsibility with them. The degree of involvement between researchers and the public can vary considerably, ranging from carers and families being involved in advisory or consultation groups, to projects where they play a lead role designing and delivering the research. Participatory research is a growing field and there is lively debate about how best to develop useful, and ethical, working relationships between ‘professional’ and ‘lay’ researchers.  More importantly, perhaps, are questions about how to make sure that this different type of research will be valued and used by a wide range of people, including those designing and delivering health and social care services to carers and families.

 

There are increasing examples of positive and innovative research between carers, families, and, researchers from academic and professional backgrounds using participatory methods.  This, in turn, has helped to shape and to change what is known about caring and, as importantly, how this knowledge is developed and shared with different people who need and who provide care.

 

If you are interested in finding out more about participatory research and/ or ways of taking in part in health research, take a look at the links below:

 

Further information:

If you would like to find out more about getting involved in research visit: www.peopleinresearch.co.uk.

There is more detailed information about how NHS and health research is working in partnership with patients and carers at: http://www.invo.org.uk/

For an overview of the policy commitments made by the NHS to expand and improve its public-patient involvement see: https://www.nice.org.uk/about/nice-communities/public-involvement/patient-and-public-involvement-policy

The Trouble with Dad (a documentary film)

In February 2017, David Baddiel presented this documentary about his changing relationship with his dad following his diagnosis of Pick’s Disease (a rare and aggressive form of dementia).  Baddiel made the documentary after touring the country performing a comedy show (My family: Not the sitcom) about how he had come to understand his dad’s illness – and his increasingly abusive behaviour – as part of a wider history of his father’s life and relationship with his three sons. Whilst touring, Baddiel said that he was stuck by the reaction of his audiences and by how many people shared similar often complicated, and powerful, stories about their own families and experiences of illness and/ or caring.  He said that he made this documentary to help make caring for people with dementia a more visible and more acceptable issue for people to talk about.

 

Critics reviewing the programme commented on the “blisteringly frank” (The Telegraph), “searing honesty” (The I) and the “brutal and brave” (The Guardian) nature of Baddiel’s perspective who says during the film that he uses humour as a way of coping with his dad’s illness. In the film, Baddiel also meets other families caring for loved-ones and comments on how different, and difficult, it would be to live with his father and to care for him full time.  He also discusses the ethics involved in making this film given his father’s limited capacity to understand what the film is about and how (and why) he sought to address this problems to share his experiences and to raise awareness about families affected by dementia.

 

The show:

http://www.channel4.com/programmes/the-trouble-with-dad

 

Selected reviews:

http://www.telegraph.co.uk/tv/2017/02/20/trouble-dad-laughter-rang-hollow-david-baddiels-frank-family/

https://inews.co.uk/essentials/culture/television/trouble-dad-david-baddiels-searing-honesty-alzheimers-will-help-others/

https://www.theguardian.com/tv-and-radio/2017/feb/21/the-trouble-with-dad-review-david-baddiel

Caring, like families, is complicated

It is evident that care and caring relationships are complicated and that they change over time.  Across the world, people are living for longer and they are increasingly experiencing chronic rather than acute or infectious diseases in older age.  This means that more families are caring for older family members for longer-periods.  This can be challenging, particularly when there are needs and expectations that younger people work for longer and combine caring for older relatives with caring for younger children. It can also be a great opportunity for families to become closer and to get to know each other in new ways.

 

Research also indicates that caring relationships are often not one-way.  A growing number of older people care for their grandchildren or younger family members.  Similarly, there are more older couples caring for one another at home with or without the help of additional paid care services.  There is also a growing number of young carers who help and support their parents or siblings as a result of physical and mental ill health, disability, or problematic substance misuse.  Research indicates that many young carers may not get the level of support and care they need because of their additional responsibilities and this can affect their own development in the short and long term.

 

Caring comes in many forms and can affect all of us at different and often multiple points across the course of our lives.  It is not always clear who is being cared-for and who is caring and some people find it unhelpful to think and talk about family relationships in this way.  People also have different feelings and experiences of caring.  It can feel like a duty, an obligation, a pleasure and an opportunity.  Often, it can be many if not all of these things are the same time.  These are just some of the issues that make care and caring complex and unique to each family in which it takes place.  It is important that policy-makers, researchers and practitioners understand and can respond to these differences in order to engage with the different realities and meanings of family care and caring.

Keeping the impact of harm in mind

Harmful behaviour by people who are ill or disabled may be different from that of people who do not have health issues in several ways.  Some illnesses and disabilities may cause people to act in more aggressive or unpredictable ways.  This can happen when people experience increased pain and sensitivity.  It can also happen when people experience mental health conditions that affect how their brain works.  This can be very confusing and distressing to people with such conditions and it can be difficult to communicate how they are feeling.

 

Similarly, people may not recognise that when they are acting in a way that can be harmful.  Other people may struggle to cope with being ill and having to change their life as a result of illness.  They may act on the difficult feelings that it brings up as they are trying to adapt and to take back control over a difficult situation.   It is also true that some harmful behaviour starts before people become ill and that this behaviour continues and changes in ill health.

 

However, it is also important to recognise that carers are likely to be negatively and possibly significantly affected by such behaviour whatever the cause or name of the harm.  It is their needs and experiences that the Hidden Harm Project is focused on raising awareness of and understanding better in order to bring about practical changes for affected families.

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.

Differences between family and professional carers

The majority of research about violent and abusive behaviour towards carers investigates the experiences of professional carers working in nursing homes and psychiatric secure services.  These studies tend to explore how and why violent and aggressive behaviour is more common amongst people with a diagnosis of mental health and cognitive impairment problems. It also looks at what the impact of ‘challenging behaviour’ has on staff members and what can be done to reduce the likelihood and frequency of it occurring.  This research has helped develop understanding about how to communicate better with people in times of distress and how to anticipate and recognise signs of potential aggression and violence.

 

We suggest that this research is useful in some ways in developing understanding about harmful behaviour towards family carers.  We also think that it is reasonable to suggest that there are important differences between situations of professional and family caring.  In families, it may be important to think about more significant and more complicated types of psychological and emotional harm.  Communication and trust are important aspects of family and intimate relationships.  When they are absent or unpredictable, this can have a significant impact on how family members respond to one another and how they feel about themselves. In this way, the threat or memory of violence or abuse can have a long-term and damaging effect in a way that is unlikely to occur in hospital and nursing homes.  In these environments, caring is shared between different people and there is no long-term or emotional relationship between carers and people with health needs.  The intimacy and intensity of the caring and family relationship changes what it means to hurt or to harm someone.  More subtle and ‘hard-to-see’ types of harm can have just as significant an impact as verbal and physical aggression.  In the context of family care, it may be useful to consider harm in a broad way and not focus too specifically on acts of observable violence and abuse.  It may also be useful to consider the immediate and the long-term impact of harmful patterns of behaviour on people needing and providing care.

 

Taken together, these issues raise questions about the limitations of transferring lessons from research about professional caring to understand the particular experiences and needs of family carers.  Until we know more about harmful behaviour in family situations it is difficult to compare and to contrast it with situations of professional caring.  We hope that this project will contribute towards this aim.

 

Why ‘hidden harm’?

We thought that it might be useful to explain why we have chosen to think about violence, abuse and harmful behaviour towards carer as a hidden type of harm.  There are four main reasons:

 

  1. It may be difficult for people who are not in the caring/ family relationship to see what is going on because they do not visit or live in the homes in which caring and family life take place. Many of the intimate aspects of carrying out physical and personal care are private and take place between two people.  Similarly, providing emotional and psychological support can be an invisible type of care.  It is hard for people to see or to recognise the impact it takes to be emotionally available and supportive of someone else.  When violence and abuse are taking place in these relationships and areas of caring it may be hard for other people to see and to understand.  In addition, what is acceptable and appropriate in one relationship is likely to be different in another.  This relates to both caring and harmful behaviour.
  1. There is limited awareness and recognition of the problem of harmful behaviour towards carers. It is not widely talked about or understood. In many ways, family violence remains an uncomfortable and difficult topic for many people to bring up or to recognise.  As a result, people affected may feel unsure or reluctant to raise the issue because they are worried about being judged, not understood or ignored.  People may in fact feel it is important to be careful not to talk about it and to find ways of coping with the problem alone.
  1. Violence and abuse cannot always be seen. Verbal and physical violence can be deeply harmful types of behaviour.  However, there is often an emotional and psychological dimension to violence and abuse. Examples of this could be people feeling threatened, intimidated or frightened of their family members.  They may also feel like they are not valued or treated with respect and dignity. Taken together, these types of abuse can affect how people think and feel about themselves.  It can also cause people to feel powerless and without control in their home and intimate relationships.  This can have a significant and negative effect on people’s physical and mental health as well as their safety.
  1. It is difficult to see how patterns of behaviour develop over time. People may be affected differently if they experience long-term abuse and harm as compared to one-off outbursts or hurtful acts.  Similarly, it is difficult to pin down how unpredictable behaviour can be experienced as frightening and harmful regardless of the intentions of the person carrying it out.  These issues can also keep the full extent of harmful behaviour difficult to see.

Taken together, these issues increase the likelihood that violence and abusive behaviour towards carers can be difficult to see, to understand and to talk about.  We want to put the issue of hidden harm at the centre of the project.  We think that it is important to identify how and why this problem is hidden in order to work out ways to address it and to bring it under a new light.  This is with the aim of affected families being better seen and heard.