6 Implications of the caring role on mental health

Data from Carers UK in 2019 and 2020 paints a concerning picture for the mental health of carers, which is perhaps not a surprise when you consider the list of challenges outlined in the previous section. Carers UK (2020a) identified that 70% of carers report negative effects on their physical and mental health, with carers rating their levels of anxiety at an average of 5.4 out of 10 compared with a population average of 2.9 out of 10 (Carers UK, 2019c). Indeed, carers looking after disabled children under the age of 18 years reported significantly poorer mental health, with 36% describing their mental health as bad or very bad (Carers UK, 2019d).

In the final activity in this session, you hear from Professor Mary Larkin who discusses the demands of caring and why these might make carers vulnerable to poor mental health.

Activity _unit2.7.1 Activity 6

Timing: Allow approximately 25 minutes.

First, listen to Audio 1 where Mary Larkin, Professor of Care, Carers and Caring from The Open University, discusses the factors that can impact on the mental health of carers, and what research tells us about it.

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Transcript: Audio 1

DR NICHOLA KENTZER:

It is understandable that taking on a caring role can impact on a carer's life, be it the additional time that caring duties take up or the physical toll on the carer with regard to fatigue. But what about the impact of the role on mental health? I am joined by Dr. Mary Larkin, professor of care, carers, and caring at The Open University who is here to discuss this topic in more detail. Welcome, Mary and thank you so much for agreeing to share your knowledge with us today. Perhaps you'd like to start by introducing yourself and how you came to be involved in research in this area.

PROFESSOR MARY LARKIN:

Thank you, Nichola, I'm very pleased to be with you here today. I had many years experience of being a carer and being involved in carers groups. And that really highlighted to me how often overlooked carers are and their needs and their physical and mental health needs. So that inspired me when I came into academia to go forward and I undertook my PhD within carer research. And since then I've been developing carer research at a national and international level.

I've also worked at national, international level in terms of policy and practice. And for the past few years I've been committed to making sure that the research and evidence we have got about carers and the impact of caring on them is really used to improve outcomes for carers. And that's why I'm delighted to be part of this project today and to be with you.

DR NICHOLA KENTZER:

Oh, that's lovely Mary and it's really interesting to hear that you've got personal experience and you took that into, your own interest in research. And one thing you mentioned there was the potential impact of mental and physical health with carers. Could you start by explaining why is it that the caring role has the potential to impact on the mental health of carers?

PROFESSOR MARY LARKIN:

Yes, there's many reasons. As many people who do care will know, caring is physically demanding and that can lead to exhaustion. There's often financial worries that can cause anxiety. Caring can often take up a lot of time and people lose their friends because they haven't got the time to invest in friendships. I mean, they have to give up the job, their social networks and activities are reduced or if not disappear, causing isolation in the longer term.

Those who can stay in work, it's often very stressful to be juggling working and caring. Particularly if people don't have particularly sympathetic employers. The lack of sleep, again, can cause exhaustion and mental health issues. So for example, I found as a statistic that on average carers have just less than 4 and 1/2 hours of sleep a night. I'm afraid I'm and eight hour a night person myself so I can't imagine what night after night only having 4 and 1/2 hours of sleep would do to me.

And last but not least, often carers can't or don't take the breaks that they need. We all need a break from whatever stress we're under and caring can be all consuming even if you want to do it and if you enjoy doing it. The fact that you can't take breaks, again, can you contribute to mental health issues for carers.

DR NICHOLA KENTZER:

Well, that's quite a list there Mary, and when we talk about the potential to impact, even the strongest of person with being influenced by those aspects, you can see why this is something that you've spent your career looking into. And on that, in terms of the research that you've completed in the research of others, what does research and looking into the caring population in a systematic way, what does it tell us about the actual impact that caring can have on mental health? So what is the evidence?

PROFESSOR MARY LARKIN:

Well, there's quite a significant body of evidence. 36% of carers describe their mental health as bad or very bad. And there's a number of typical mental health problems that they do suffer from, which will probably come as no surprise to many people, but 84% of carers feel stressed and that can make it hard to cope with the demands of caring. There's various symptoms of stress, these can be mental and physical. And although these vary from person to person, mental symptoms can include anger, lack of appetite, sleeplessness, crying often, tiredness which we referred to already, and difficulty concentrating.

And amongst the physical symptoms of cramps, muscle spasms, chest pains, dizziness, restlessness, a nervous twitch, twitches. Another common mental health problem is depression. This can often build up gradually and people don't realise how it's affecting them. But 55% of all carers report that they have suffered from depression which, as a result of their caring role. And that's nearly twice as much as the general population.

And this can make them feel hopeless and irritable, that they're unable to cope. Again, losing appetite, losing weight. And in extreme cases depression can lead to them thinking about harming themselves or other people.

The third common mental health problem is anxiety. And again, carers experience over double the average rates of anxiety compared to the rest of the population. There are particular groups of carers who are more vulnerable to mental health problems than others. The key ones are those who are caring for somebody with dementia, those who provide long hours of care and have to devote a significant proportion of their time to care. Young carers are vulnerable too. And those carers who are looking after a disabled child under the age of 18.

End transcript: Audio 1

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Audio _unit2.7.1 Audio 1

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Can you relate to any of the factors related to caring that are discussed? If you are not a carer, can you identify any of the factors that might impact on the carers from Activity 2?

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Discussion

Professor Larkin discusses a number of factors that can impact on a carer’s mental health including those shown in Figure 8. You might have personally related to several of these, or have identified where there was the potential for them.

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Figure _unit2.7.1 Figure 8 Factors impacting on a carer’s mental health

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A spider diagram showing factors affecting a carer’s mental health. It lists the following:

• loss of friendships
• time taken caring
• lack of sleep
• financial concerns
• anxiety
• not taking sufficient breaks
• juggling work and caring
• isolation.

Figure 8 Factors impacting on a carer’s mental health

Now listen to Audio 2 where Professor Larkin explains what could be done to support wellbeing in the caring role. As you listen, reflect on the content and consider how the mental health of carers, such as the case studies in Activity 2, can be supported.

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Transcript: Audio 2

DR NICHOLA KENTZER:

What can be done to support positive mental health and wellbeing in the caring role?

PROFESSOR MARY LARKIN:

Yes, I mean, that's a very good question and a lot of the Carers' organisations are working hard to address mental ill health in carers and to support them. Many local carers' groups encourage carers to join them and to share their experience as a way of alleviating, and feeling comforted, and sort of a cathartic experience as well.

Breaks are advocated, but as we've said, it's not always easy. But this kind of smaller breaks, like getting away for a couple of hours just for the carer to treat themselves to something they enjoy doing, can actually make a big difference. There's various online chat forums. The Carers UK website is a really good example of this. And the use of these has increased rapidly during the pandemic for obvious reasons.

Carers are encouraged to talk to their family and friends, again, to share things and get things out in the open. If carers are finding that those sort of things don't work, there's various psychotherapy and counselling interventions, such as mindfulness.

And there have been some developments, in terms of bespoke strategies, for particular groups of carers. For example, dementia carers, there's a program called START, which is a manual based coping strategy to reduce the effective symptoms and depression in carers. It's actually, the full name, is Strategies For Relatives, but if anyone's interested they can find that online.

And this is linked to the broader emphasis on building up care resilience and self-help more generally, so that carers develop their own personalized strategies for coping with the situation that they're in. And part of this involves advising carers how to look after their own physical and mental health, and their emotional and spiritual wellbeing. For example, don't drink-- don't drink too much or smoke too much, and trying to pace yourself. Learning to say no, for some people at least some of the time.

And crucially, physical exercise, because this is a simple way to relieve tension. I know there's a big push to encourage carers to try and engage in physical exercise. But when asked about the possibility of doing that, apparently 81% of carers have said that they're not able to do as much physical exercise as they would like. So that's obviously a key issue that we need to continue to work on.

DR NICHOLA KENTZER:

That's really interesting, Mary. Thank you. And I think one of the things that's sort of jumped out for me in what you are saying is the individual nature of which an intervention to support a carer. The importance of it being appropriate and supportive to the individual carer, and educating and empowering the carer to find what works best for them. And so, understanding and being educated about the impact of the caring role and then what could work for them.

PROFESSOR MARY LARKIN:

Sure. And giving them a choice over what-- as you say, what would work for them, because every caring situation is different. And every carer is different. So putting together a package of strategies that they feel helps them, I think, is really important.

DR NICHOLA KENTZER:

That's super. Mary, thank you so much for joining us today and sharing your expert knowledge on the subject. It's really kind of you. Thank you.

PROFESSOR MARY LARKIN:

It's my pleasure. Thank you very much for inviting me.

End transcript: Audio 2

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Audio _unit2.7.2 Audio 2

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Discussion

Professor Larkin made several suggestions that could support the three carers from Activity 2 including:

• joining a carer group to share experiences
• taking a break from caring – even if for a couple of hours
• accessing online support from caring organisations
• talking to family and friends
• using interventions such as psychotherapy, counselling and mindfulness
• accessing specific support where applicable, such as the Strategies for Relatives for carers of those with dementia (see the Further reading at the end of the course for the link to this initiative).
• developing resilience.

One key feature of support for carers was the importance of carers having a ‘package of strategies’ that works for them.

Professor Larkin highlighted the use of physical activity as one mechanism to promote health and wellbeing in the caring role. This will be the focus of Session 2.

Much research and associated narrative has focused on the negative consequences of caring. It is important, however, to consider these views alongside the co-existing satisfactions and intrinsic benefits of caring (Larkin et al., 2019). For example, the relationship can be beneficial to both parties, the carer and the care recipient, by providing an opportunity to celebrate the small things, resolve any past conflicts, develop personal strength and experience the cared person’s life more fully, by engaging with them on a deeper level than before (Hogstel, Curry & Walker, 2005).