Family carers and caring: what it's all about podcast

Transcript

Family carers and caring: what it's all about

Francesca Lombardo (FL): Hi, I'm Francesca Lombardo, Marketing Executive at Emerald Publishing and co-host of the Emerald Publishing Podcast Series. In this episode, I'm joined by two academics, Allisoun Milne, and Mary Larkin. Today we'll talk about their upcoming book, Family Carers and Caring: What It's All About. It will be published on the fourth of October. Hi, Mary and Allison. Welcome.

Alisoun Milne (AM): Thanks very much for inviting us to the podcast. We're delighted to be here. So I'm Alison Milne. I'm Professor Emeritus of Social Gerontology and Social Work at the University of Kent. I was a social worker and social work team manager for eight years before beginning work as an academic in 1995 at the University, the last 10 years of my time at Kent was spent in the social work department teaching social work students, postgraduates and undergraduates. Work on family carers has been a long-term interest of mine probably over the last 20 or so years, particularly older carers, dementia carers and spousal carers. And I've done a lot of teacher research and writing on care, caring and carers. It's a subject that intersects with my other key research interests, mental health in later life, long term care and social work with older people and their families.

FL: Thank you, Alisoun, and welcome. Mary, would you like to introduce yourself?

ML: Hello, I'm Mary Larkin, I'm Professor of Care, Carers and Caring at the Open University. As I chose on purpose to profile carers and care across the UK and in internationally. I've many years experience of care research and working with carers and carers organisations in order to make sure that policy and practice are evidence based, and to use the research that we do to have maximum impact to improve outcomes for carers. And not only do I publish widely, but it makes sense of expertise and family caring has led to my membership of several national and international bodies, committees and commissions. For example, I was on the Nice Guideline committee for the provision of support for adult carers recently.

FL: Let's dive in. What was the reasoning behind writing this book?

AM: Well, um, in about 2016 2015, I was at a British Society of Gerontology Conference, and I was at the Emerald stand, and the commissioning editor approached me and asked me whether I might wish to contribute to your series society now. And we had a chat, and we agreed that family care and caring was definitely a contemporary social issue that very much fitted with the with the series and a wide public interest that probably warranted a book. So it also felt timely, really and valuable to write a book in an accessible style, yet academically informed way that offered an overview of carers issues across the whole kind of carer world. If local carer landscape. There's a lot of stuff out there on carers, reports, papers, books, but there isn't really there hasn't ever been until we think now anyway, a book that brings material from all these sorts of sources together into a single place. I had two conditions when I spoke to the commissioning editor. One was that I was not to be put under time pressure to produce it with any great speed, because certainly at that time, I was under enormous pressure at work. And the second one was, I could write it with my friend and colleague, Mary Larkin. And both were agreed to, and Mary and I had long talked about doing this project, actually. So it was all rather timely and good opportunity for us to plunge in and do what we wanted to do and meet the needs of Emerald’s Society Now Series as well.

FL: Yeah that is great, I think the Society Now Series is very interesting because it covers so many different topics. You talk about care, there's also books about AI, technology, society and culture. So you know, when you talk about the various dimensions of family caring in the book, could you shed a light on there? Could you explain that a bit more? And why is it so important to have a clearer definition when talking about carers and family caregivers?

ML: Family carers and caring is a very complex and multi-dimensional subject because caring, caring they sound like simple concepts EPS is at the same time they defy definition or being captured. For example, caring is a description of an emotion. You care about your partner or your parent. But it's also a set of actions you care for a parent has dementia or some other learning disability. So caring, caring struggle, both emotions and actions. They're also relationally embedded in a marriage in a parent child relationship. And whilst we do adopt a definition of a family carer, we use the carers trust definition, which is anyone who cares unpaid for a friend or family member who due to illness, disability or mental health problem, one addiction cannot cope without their support. We do acknowledge that this may not encompass all carers. There are also paid carers to, but we don't really cover paid caring in our book in any depth, because we wanted to focus primarily on family carers. It's important to note too that who is and who isn't a carer shifts through time and over the course of a life course of a carer. And many carers, especially older spouse, carers don't actually view themselves as carers. When caring begins, it's also an issue. Therefore, I think we're both not sure that being tied to a single definition is crucial to exploring the subject. But it certainly helps to shape the discussion and offer boundaries around it too. In terms of the various dimensions of caring, in our book, we've got seven chapters. We start off as he obviously with an introduction, then we profile family caring in the UK looking at patterns and trends, we move on to looking at the impact and consequences of caring on carers. Then, ways of supporting carers. The next couple of chapters are more kind of theoretical in approach. And we talk about conceptualising and understanding care and caring. And we come back to in chapter six, the issue of social justice, social citizenship, and rights for carers. Then the final chapter, is called Looking forward some key issues that we need to focus on. And that's where we pull out where we think what the next stage is in in terms of what needs to be done for carers. We're only covering some of the carers the terrain, and ever seen, we can't address all of the issues in detail. And we don't, for example, explore the profile of many smaller groups of carers, like carers of people with HIV and AIDS. And we say far less about young carers than adult carers. And whilst we refer mainly to data from the UK, where it's needed, we do draw on a range of international material in most of the key arguments, for example, about conceptualising and theorising care, because of the International relevant relevance and resonance of these concepts.

FL: You mentioned to you focused on carers, family carriers in the UK. So I was wondering, over the years, have the numbers of family carers changed in the UK? And what are also the demographic shifts that influenced this change?

ML: There's more and more carers figures over the last 20 years show that they've been, they've increased quite dramatically. So say, for example, in 2002, something like 2% and now it's estimated that around 15% of the UK population are caring. The increases primarily because there's more people with dependency needs, and more people with those needs living in long term in the community, not in care homes, or institutional settings. And most of these are older people, which reflects the aging profile of the UK. And of course, obviously, of the global population they're not the only reason why we've got more people to care for. There's also growing numbers of children and young people with complex needs surviving into mid life now. And beyond even, particularly those with example conditions like Down syndrome, and that's because of medical advances and improved access to health and care.

FL: Yeah, yeah, that makes sense. How is the role of carer evolved over time? What are the factors that have contributed to these changes?

ML: In our book, we explain how carers roles have evolved because more carers now do more complex tasks. For example, Monitoring and administering medications changing dressings. And they do multiple care tasks to helping a relative with dressing barfing, getting out of bed, up and down stairs and maybe even feeding. In addition to that they're doing the shopping, overseeing and arranging hospital appointments with the cared for person, and all of the other activities they were doing before their needs increase. care tasks tend to be additive to one of the most challenging conditions for carers is dementia and dementia carers have been shown to have amongst the highest levels of stress of carers. And in terms of carers evolving. Because everyone's living longer. It means that more carers are moving in and out of caring roles across their lives. For example, a woman may care for her parents, and then some years later for her husband. This is called Serial caring. And some carers will also care for two or more people at the same time. For example, an elderly parent and a disabled child. Another relatively new group of carers are called sandwich carers. This group is defined as those people who care for an older sick or disabled loved one, at the same time, as they're providing support for their own children, and maybe even grandchildren too. Their emergence has been attributed to the intersection of the growth in the number of older relatives with care needs, usually an older parent or parent-in-law, with the growth in the number of older children living with their parents. When I say older, I mean 25 Plus, both these trends are likely to grow to the number of sandwich carers is also likely to increase. And the fact that carers get less support from nurses, social workers and third sector agencies is also relevant. The so-called austerity measures have hit carers really hard. They're not only doing more but they're getting less input from formal services to both for themselves and for the cared for person. 

FL: Makes me wonder, you emphasise that carers is a universal need an intrinsic part of human relationships? How does this understanding challenge the traditional narrative that separates carers from the rest of society? And what are the implications for policies and support systems?

AM: That's a very good question, actually. Francesca, I mean, it's a challenge, we think for for contemporary policy thinking and understanding, not just in the UK, but in in other countries as well. I mean, in essence, if one accepts that we all care for one another in our families, and our family relationships and friendships, and also that we will all need some sort of care sooner or later than everyone is, or will be a carer. I mean, I'm sure you've broken a limb over the years or been incapacitated in the short term, and you've probably then depended on a partner or a parent in ways that you perhaps wouldn't have imagined you would normally have to do so we've all had a taste of that. And for some people, that's a long-term thing. And we're all in interdependent relationships, you know, you depend on someone, and they depend on you. And if you think about it through this particular lens, this extends the conceptual way, or the conceptual umbrella of care and caring to include most of us, not just the relatively few that we currently tend to define as carers, and I refer back to the carers trust definition that that Mary spoke about earlier. And this lens not only challenges how we as a society support carers, but shifts the role of policy in support services away from a few towards the many. And we're not suggesting for a second that carers as they are currently framed and defined, shouldn't be supported quite the opposite. It's more that if we accept we are all involved in care and caring, now and, and possibly in the future, then how care is supported takes on a different sort of shape or a different nature. policy relating to employment, for example, may need to embed carers leave as a write much more robustly than is the case at present. And it would need to be viewed as a social risk care as a social risk. By that I mean, a risk that is borne by wider society, not just by individual carers and families. This broader more inclusive model would also recognise that caring is a gendered activity. More women are carers than men. They tend to do more caring to Mary spoke just now about the complexity of caring, having evolved more recently to include a range of more complex care tasks. So if more women are doing caring, they tend to be doing also that more complex counting. More daughters tend to care for parents, and more mothers tend to care for disabled children. So the expectation to care I think is very embedded element of our culture and society. It's gendered in practically all care contexts, apart from spousal care in later life, whereas many husbands care for wives, as wives for husbands, and that's a whole other discussion. But the thinking there is the marital contract is an important element of that commitment for men. And for women, too, but perhaps more distinctively for men. The present model, i.e. the way that we kind of fairly narrowly construct carers, expects carers to bear most of the responsibility and costs of caring physically, emotionally, and financially, rather than it being a shared responsibility with welfare agencies support services, employers and communities. Although there is a commitment amongst local authorities and the carers third sector to provide as many services as finances will allow, relatively few carers actually gain access to support services, only those quote, in very high levels of need, unquote, that's related to access to care services. And as Mary also said, just now, more and more is expected of carers. If you like it suits the neoliberal narrative, it's the family's responsibility to provide care for its members with dependency needs. And the shrinking welfare state to retain a fairly narrow definition of care. So, in essence, it's a political issue, as well as being social and familial, and societal one.

FL: You mentioned that there is more, so it's the case that usually a spouse cares for the other spouse or you know, caring for parents. So, does that mean there is almost like a stigma when a family asks a stranger or, you know, a third party to take care of the family members?

AM: I mean, that's a good question. I think there's definitely a stigma related to add missing an elderly relative to a care home, I mean, relatives, families, children, adult children, in particular, and partners, spouses often feel a lot of guilt when their relative is admitted to a care home. And this is partly because, of course, you know, it is a huge change in all of those people's lives. And, you know, for many spouses carers, it's a massive shift in terms of how they've lived their life for a long, long time. But it's also because we've demonised the care how we've made it somehow linked to a kind of almost a failure on the part of the family to care. 

ML: The care home is really this last resort is very well conceptualised as a last resort and so expensive now as well, with limited financial support. 

AM: That's right. Exactly. In terms of getting care services into the home. I think that's less stigmatising. But what is stigmatising is, is having to go and ask for help from the local authority, Because don't forget, there are quite a lot of people now who simply go on by support for their for their elderly parent, they just go to a to a private agency or a poor third sector agency, and would buy care. So home care or day care or respite care. So only the people that really haven't got a lot of money or on low incomes, would generally go to the local authority to ask for any kind of support. And they're usually in a much more severe, severe situation in terms of their levels of need, as I've just explained about, but only people with extremely high levels of need getting access to publicly funded cat. I think that is much more stigmatising. Yes. Would you agree with that, Mary?

ML: I don't know. Because I think some people think the local authority should be doing more for them than it is. I think it's very complex. And it's changed now because of cuts in local authority funding, isn't it? And I think people a lot of people are put off going to local authorities because they know that in for a really complex set of processes, that they may not be able to find their way through. So I think is multifaceted.

AM: Which takes us neatly back to the to the political nature or the political intersection. Caring, because as Mary just said, austerity and the shrinking back of the welfare state, the reduction of access to services is, in essence a political decision. The local authority has been starved starved of, of income mainly from central government position carers in this in this really challenging situation of doing more and more and more, but also getting less, less and less support from public sector agencies however much they may need it.

FL: Yeah, because they that's what I was wondering because I'm you know, I have no idea how it works in terms of benefits. So you as a carer, would you get any help from the government and the moment they you sign up as a carer, what's the amount that carers get? Is it enough?

ML: There's a benefit called Carers Allowance, but the criteria for getting it are fairly stringent and it is also very low. Apparently, I think it's only about 67 pounds a week. There are some adjustments you can get depending on other benefits and levels of income, but the carers organisations that lobby for carers always pointing out the inadequacy of those adjustments.

FL: This brings me to the next question that I wanted to ask. From everyday tasks to more intensive responsibilities, how do the range of tasks that family carers undertake impact their daily lives, because surely, 67 pounds is not going to cover that.

ML: Exactly. Well care and caring impacts on family carers lives in many different ways. For those who are employed, they find that juggling work and employment and caring can be really overwhelming. And many carers often those ones who are in midlife feel that they have no option other than to reduce their working hours or leave their jobs altogether. There's evidence that 2.1 million carers reduced their working hours in order to work and care and carers are more likely to work part time than non carers and 2.6 million people give up their work in order to care. And understandably, if they can't work, many carers face very difficult financial situations. It's been found that two in five carers say they're struggling to make ends meet. And survey data shows that the financial hardship experienced by carers resulted in them having to back on spending on essentials, like food and, and heating, the social activities, many nearly half have to draw down on their savings, and around a third use their bank account overdraft and 21% report being or having been in debt as a direct result of caring and 15% have fallen into arrears with utility bills. And last but not least, 9% say they're falling into arrears with their housing costs, like their rent or their mortgage payments. Caring also has a major impact on health. Being a carer can be very stressful and anxiety inducing. Often carers don't have time for healthy living, such as exercising or eating properly, or getting sufficient sleep. The pressures on their time can also lead to carers being unable to attend to their own medical checkups or appointments, or having to delay or even cancel them. And in addition, 80% of carers report feeling lonely or isolated as a result of their caring role. So, all of these factors stress anxiety, loneliness socialisation, reduced opportunities to live a life outside caring. They all inevitably compromise carers quality of life and health and well-being. And quite unsurprisingly, carers are about 50% more likely to report poor physical and psychological well-being than people without caring responsibilities. 63% of carers have had at least one long term health condition, disability or illness, compared to 50% of non carers, and over a quarter of carers are in receipt of Disability Living Allowance. Physical health issues include muscular skeletal on back problems, that's obviously linked to the physical tasks of caring, such as moving and handling and bathing and dressing. They have suffered more likely to suffer for heart disease, exhaustion, skin disorders and infections, arthritis, sciatica, high blood pressure, asthma, hernias, and dental issues. Some carers report multiple health problems. And in terms of psychological morbidity, carers are twice nearly twice as likely to suffer from depression and anxiety than non-carers. There's an emerging body of international evidence which suggests that carers may be at high risk of suicide too.

FL: Is there any policies or you know, any kind of help that carers feel like they're taking care of? Or do you think there is a need to integrate care ethics into the political discourse so there is more, there is policies that actually can help the carriers in the care recipients lives?

AM: I mean, we do feel quite strongly actually, that it that caring is an issue of social justice, which intersects with your question about what the policy and what the role of government says. And we we've mentioned a little bit about this already, but I think it's quite important to discuss this in a bit more detail. Marian, I would possibly simply say that caring is an issue of social justice, as Mary's described caring, often profoundly disadvantages carers, especially over the long term. For example, if you're caring for a relative with dementia, which tends to be a long-term condition, or you're a parent of a child with a lifelong disability, often you're caring for many, many years. Many have to give up their jobs as Mary said, many are made ill or he or more ill if they've already got a health condition by caring, and more and more carers live in poverty or all the edges of poverty carers often say things like, if I had to bind the fridge, that will be it, all my savings would be gone. The other thing that carers often report is being trapped feeling trapped by their caring role. And we also noted earlier than not not all carers, even if they do, quote, a lot of caring unquote, identifies a carer. And this is particularly the case for long term spouse carers to do this would be antithetical to the relationship. The carer and cared for person are embedded in a spouse carer might for example, be reluctant to see himself or herself as a carer for their long-term partner, because this positions the partner in a dependent role, a role of need, that the carer does not want to put them in. So, the policy argument that we need to recognise carers assumes that carers are unproblematically going to identify themselves, which as I've just explained, for a lot of carers is simply not the case. They see themselves as doing their duty. It's what you're supposed to do. I'm not a carer on her, and I'm her husband or I'm his wife or parent. The other thing about the carer discloses that we that we tend to see carers as somehow separate from the person they're looking after, when of course, much like a parent looking after a child a carer is only a carer because they're supporting somebody else. So, there's a question about looking at the dyad, which we haven't got time to discuss, but it feels often odd to carers that they're seen almost separately from the person they're looking after. But it also belies mutual care or caring, where a dyad particularly perhaps spouse couple will be looking after one another. One partner may be physically frail, where the other partner may have dementia, and they may rub along together for quite a while doing different but complementary tasks. There are other facets to the social justice argument to how far can we expect a wife to care for her husband who may have abused her or their married life? What about new or ongoing intentional or unintentional harm to carers by the cared for persons were reluctant to acknowledge these darker, more challenging issues, because it hits ill with the persistent, positive hero like narrative that dominates public and policy discourse. It also fits ill with a right space set of demands for carers. carers are generally indicated in the welfare paradigm, not the social justice paradigm. And we would argue that until carers are located firmly in the latter, it is unlikely that situations will radically improve or that principles consistent with the ethic of care approach that you mentioned just now. For example, services that permit carers to care in ways that they wish to an ability to make a choice about whether caring is meeting the needs of the cared for person effectively, and the carer to protect their own health. Those dimensions will be unlikely to be implemented, we think, until Karen is shifted more firmly into the social justice, arena and political engagement with a discourse that places care and caring at the heart of policymaking and policy implementation. Not on its edges were currently carers are situated. That takes account of carers lives on welfare well before they reach crisis point that genuinely supports the family, including funding decent welfare benefits. We've already discussed those and social care services. We think this would take us some way to reducing harm to carers and reducing what some consider to be their exploitation. After all, if a carers needs are increasing, and services are decreasing, who picks up the care tab? Well, of course, it's family carers, whether they want to or not, and whether they are capable or able to or not. So, we need to embed care related issues across policymaking as a process and recognisng it as an issue that matters to and affects all of us. So, we also think that inequalities and input is an important issue to raise in relationship to carers and intersects with caring in a number of ways. We've talked about gender a little bit already. Another facet is that increasing numbers of carers are older i.e. their own 65 Plus, in fact, there is a particular growth amongst carers aged 85 Plus. Are we okay with very elderly frail carers caring for a very elderly spouse perhaps living with dementia? How far does the expectation of the family to do caring extend and caring intersects with socio economic disadvantage in a number of ways to live costs related health inequalities mean that people from poor backgrounds become chronically ill, and develop a need for care at a younger chronological age than their better off counterparts. This obviously has care implications for their family, often female relatives. Carers from more disadvantaged backgrounds are much more likely to have to start caring in midlife, as opposed to later life to give up paid work earlier, fall to falling into long term poverty and becoming ill themselves because they don't have access to money to pay for care services for the person they're looking after. And cuts or so-called austerity measures. In terms of services for both carers and the cared for person, disproportionately impact on carers from poorer backgrounds and poor communities. Black and minority ethnic carers are likely to suffer greater ill health than their white peers. While this has been attributed to the fact that more lack of minority ethnic carers provide higher levels of care, and experience higher levels of loss of paid employment and social exclusion, there are other influences at play to barriers imposed by discrimination, for example, by culture, language and underlying inequalities. Examples of these include the fact that some black and minority ethnic communities are more at risk of unemployment, struggling financially because of low income and poverty, long term exposure to social exclusion. And it'll help the inequalities agenda intersects with the social justice agenda in ways that amplify a need to address both. There was a clear role for policy in mitigating the preventable harms related to caring, promoting health and well being reducing exclusion and alleviating poverty amongst carers. Carers need rights as well as recognition and social justice, as well as support. 

FL: Yeah, it feels like there's a lot to work on for policymakers.

AM: I think policymakers in a way it's quite seductive to construct carers through this narrow lens of that we described earlier on because then you've only got to pay attention to that group of people. The more you kind of draw the camera back and the more you recognise caring, caring as this more complex, multi-dimensional issue, in essence, the more challenging it is, for policy that they have, policymakers have a greater set of responsibilities. But but we do feel very strongly that unless that's done, where in effect, we were ignoring a lot of carers and carers needs when we could be preventing carer breakdown. And also we're not acknowledging the extent of carrying or the consequences of carrying on waste on most carers and families.

FL: Thank you for listening to today's episode. You can find more information about our guests and their book, and therefore of the show on our website. I would like to thank Daniel Ridge for helping with today's episode in the Studio This is Distorted.