Carer's Allowance Supplement - evaluation: qualitative research (annex A)

5. Impact of Carer's Allowance Supplement on quality of life

Key findings

In general, the carers that we interviewed reported that their mental health was poor or variable, and had been negatively impacted by their caring responsibilities. Issues commonly raised included the physical and emotional toil of round-the-clock care; anxieties about the health and wellbeing of the person they care for; worries about finances; isolation; and not being able to undertake paid work.

Typically, CAS had helped improve their mental health and wellbeing a little: it had a positive impact on relieving money worries around the months carers received the payment, and had given them "a wee lift".

More exceptionally, its impact on mental health and wellbeing had been transformative. This was in cases where it had enabled carers in great financial difficulty to pay off debts or where it had been used towards a trip away when carers felt they were close to breaking point.

There were mixed views on the impact of CAS on carers' sense of control and empowerment. It had made the biggest difference to those who were struggling the most financially by helping them to feel more on top of their finances and more prepared for upcoming expenses. Others thought it had made little difference overall.

CAS had generally not had a big impact on carers' physical health. However, there were a few examples of it being used to support physical health including buying healthier food, affording more heating in winter, facilitating exercise hobbies, or enabling the purchase of back and knee support items.

This chapter explores the impact of CAS on carers' quality of life, looking specifically at any impact on mental health and wellbeing; feelings of control and empowerment; and physical health.

Carers' mental health and wellbeing

Typically, when asked about their mental health and wellbeing, carers reported that they tried to stay positive, but that they experienced variable or poor mental health. It was common for carers to remark that life was "difficult at times" or that they had been "up and down" or had "good days and bad days". However, there was also evidence of factors which had help maintain or improve wellbeing among some carers.

Some carers, in addition, had experienced anxiety and depression to varying levels of severity. Among this group, there were carers who said that they had "reached breaking point" in the past, had "cracked", had suicidal thoughts, or had been through "dark times". Generally, these carers reported that the worst period had been when the person they were caring for received their diagnosis or the point where their condition had worsened significantly.

There were four main ways in which caring was reported to negatively affect carers' mental health and wellbeing: the round-the-clock demands and anxiety about their loved one's condition; the social isolation; worries about finances; and having to give up work. This reflects wider research on the experience of intensive unpaid caring. Each of these is discussed in more detail below followed by an outline of the factors contributing to good mental health and wellbeing among some carers.

The round-the-clock demands and anxieties of caring

Firstly, caring responsibilities had contributed directly to heightened anxiety and stress. Carers consistently made reference to the mental stress associated with needing to frequently attend to, or be constantly available for, the person for whom they were caring. There were also the underlying fears about their loved one's condition deteriorating. This often led to carers feeling constantly anxious which could impact negatively on carers' sleep.

"You're constantly on alert, can never get to relax mentally."

Female, 35-54, Caring for adult daughter

Carers were typically unable to obtain any respite care (whether formal or informal) but also unable to find any momentary respite in the form of short breaks during the day or even throughout the week. For the most part, carers had not found the time or care cover to attend carers' group meetings. One carer contrasted this aspect of caring with working as a teacher, reflecting that, while the school staff room had made the challenges of teaching manageable by providing "breathing space", and opportunities to "diffuse" by talking through experiences with colleagues, she really suffered from the lack of such a space available to her as a carer.

Isolation and lack of social interaction

A second way in which caring responsibilities affected mental health was through limiting social interactions. Those caring full-time reported feeling isolated due to few or no opportunities to socialise, with some losing friends as a result of having to care round-the-clock and not being able to leave home. Some carers commented that they had not been out for an evening in years. This sense of isolation tended to be heightened among single mothers caring for children (who specifically missed adult company), and in cases where the person for whom they were caring had a disability or condition which limited the quality of their social interaction (e.g. dementia).

Among those who lived with others besides the person for whom they were caring, there were those who felt quality time with their partner and/or family had been limited as a result of caring.

Worries about finances

Thirdly there were worries about finances. As discussed in Chapter 3, there were three groups of carers: one group was really struggling to meet their basic needs and frequently worried about money; a second group did not have to worry about paying for daily essentials but still felt some level of pressure about money; and a third expressed little to no worry about money issues. For more details on this, including the impact of caring on finances, please see Chapter 3.

Having to give up work

Some carers reported that caring had impacted on their employment and career. This not only impacted on finances and feelings of social isolation (referenced above), but on their sense of identity.

There were carers who had been forced give up their jobs as a result of caring which had an immediate impact on their sense of identity. They expressed a sense of loss of a prior, more independent, way of life.

For others, being out of work for an extended period had caused concerns about future employment prospects and the potential to pursue their desired career path. In some cases, this was because becoming a carer had interrupted their education while others had wished to pursue vocational courses while they were caring, but not had the time or energy to do so. These carers felt that their inability to pursue a career of their choice had compromised their identity, autonomy and sense of purpose.

Factors contributing to good mental health and wellbeing

There were carers who said they maintained good mental health. There were those who felt that caring had no negative impact because they felt being able to spend their time with their loved one, for whom they cared, was the most important factor for their wellbeing.

Others indicated that they had been able to prevent or offset any the negative impacts of caring on their mental health through taking measures to promote their wellbeing. These included working, pursuing hobbies, exercising and attending support groups.

A more exceptional perspective was that caring had an overall positive effect on mental health and wellbeing. These carers felt supported by family and friends and had made valuable connections with other carers. One described how caring had changed her outlook, making her more open-minded and accepting, and less judgmental of others.

"Not negative, positive – I've made friends for life in other carers. It opens your eyes and makes you non-judgmental."

Female, 18-34, Caring for children under 18

Impact of Carer's Allowance Supplement on mental health and wellbeing

The dominant view among carers was that CAS had helped improve their mental wellbeing a little. Carers repeatedly described feeling "excited" in anticipation of receiving it, and "happy" and "relieved" when they received it.

"It's nice to think there's something coming to be excited about."

Female, 35-54, Caring for adult daughter

"Ok – I can breathe!"

(Another) Female, 35-54, Caring for adult daughter

Carers consistently reported that CAS had given them "a wee lift" in the context of their round-the-clock responsibilities, or commented that it had taken a little of the "weight off the shoulders" by slightly reducing stress about money. Among those struggling more financially, CAS reduced their worries about money for a few weeks, and in some cases their uncertainty about being able to pay off bills. For those who were just "getting by" – able to afford essentials but little else – CAS was a welcome "bonus", enabling them to have some disposable income to spend on themselves and other family members.

A main perceived limitation to CAS's impact on carers' financial worries was the time-frame over which it had an impact. Carers tended to report that it generally only made a difference in the few weeks after they received it.

For those who did not have to use CAS on day-to-day expenses, it helped to promote carers' wellbeing in other ways. A common way that carers in this position had used it was on holidays, short breaks away or days out, which they felt were very beneficial, and offered "a breather" from their isolation and round-the-clock demands of their day-to-day responsibilities. In addition to enjoying the breaks at the time, carers found value in being able to look forward to them in the preceding weeks and months, and creating happy family memories to look back on. Other carers got a "boost" from being able to celebrate family birthdays with a meal out – which was particularly cherished in the context of the limited range of special occasions they were able to enjoy.

While the dominant view was that CAS had helped improve their mental health and wellbeing a little – rather than a great deal – for others it had a transformative impact. There were two main circumstances in which it made such a difference.

The first was in the context of great financial difficulty, where CAS had been used to pay off debts. For these carers, CAS had provided a huge sense of relief and lifted a great burden.

"[Being able to clear debts] was amazing – they had felt never-ending before."

Female, 55+, Caring for adult son

A second circumstance in which CAS had been transformative was among carers for whom it enabled a trip away at a critical moment, when they felt they were really suffering with their mental health.

"Without money to go on trip I might have had a breakdown – I was on the mental edge."

Female, 35-54, Caring for a child under 18

In exceptional cases, carers felt CAS had nothelped their mental health or wellbeing at all. This was generally for one of two reasons.

For some carers who were struggling financially, CAS was felt to be too little money to ease their financial worries. They remarked that even with CAS, money remained a constant concern and that it was therefore not able to change their situation.

"I still have to worry about money every week, so [it makes] no difference."

Female, 35-54, Caring for a child under 18

For other carers, any relief of financial worries was overwhelmed by other issues which they felt money could not address. These included feeling socially isolated, feeling that they lacked support, and feeling fearful about the health of the person for whom they care. Among those for whom these were the main contributing factors to poor mental health, CAS was unable to provide a sense of emotional relief.

Carers' sense of control and empowerment

Carers generally expressed a sense that their caring responsibilities had impacted negatively on their feelings of control and empowerment. There were a range of ways in which it had this effect: through contributing to worries about money and finances; through making it more difficult to plan for the future or to plan social activities; and by limiting where they could go or what they could do on a day-to-day basis.

Impact on control and empowerment

There were mixed experiences in terms of the impact of CAS on carers' sense of control and empowerment. Carers' experiences in this regard tended to align with the extent to which CAS had reduced financial worries.

For those who were struggling the most financially, it had helped them to feel more in control by enabling them to stay "in the black", reducing the likelihood or frequency that their essential outgoings would exceed their income.

"Seeing my debt come down was brilliant and knowing there were only a couple of months to go [before the next payment]."

Female, 55+, Caring for adult son

For other carers, who were not necessarily in debt, but nonetheless had some financial worries, CAS improved their sense of control and empowerment by enabling them to plan their future spending rather than living reactively.

"Instead of worrying about paying things last minute, I think 'that's in place', and I can plan."

Female, 18-34, Caring for child under 18

"It allows you to plan to use it in a beneficial way."

Female, 35-54, Caring for adult son

For carers who were able to put the money towards holidays and birthday celebrations, they described how planning these special occasions gave them a sense of empowerment. It helped them focus on the nice things they could still do with their family, rather than on the ways in which their caring responsibilities restricted them.

"Being able to plan birthday meals helps [me feel in control] – gives me something to look forward to."

Female, 35-54, Caring for partner

For others, CAS had not really enhanced their sense of control or empowerment, or its impact in this respect was limited to the few weeks immediately after they received it. There were two perspectives on this.

The main perspective among this group was that the amount of money they received was not enough to make a significant difference to their sense of financial security and money remained a worry. It was felt that the money was not enough for large expenses and was more of an "extra" or top-up to their main income.

"It's only twice a year, it's only a small amount. It's a nice cushion but it's not life-changing money. It did help but just as an extra. It's not £100 per month – that would be life changing money."

Female, 35-54, Caring for child under 18

"It's not enough to affect that [sense of control and empowerment]."

Male, 55+, Caring for partner and children under 18

Others emphasised the short-term nature of the effect, saying that while it helped them at the time they received it, its impact on their life was limited to just a few weeks.

"In June yes [increases sense of control and empowerment], and at Christmas, but not the rest of the year."

Female, 55+, Caring for partner

A more exceptional perspective was that, while CAS helped carers to feel more in control of their finances, this faded into insignificance in comparison with the overwhelming lack of control they continued to feel in other areas of their life – such as where they could go, and what they could do, on a day-to-day basis, and the health of the person they cared for.

Carers' physical health

There was a wide spectrum in terms of the physical health of the carers interviewed, ranging from those generally in very good or pretty good health, to those with long-term health conditions which were manageable and did not have too much impact on them day-to-day, to those who were more seriously affected by long-term conditions.

However, carers across all three of these groups felt their physical healthhad been affected by caring. A variety of different impacts were mentioned.

The chronic stress experienced by many carers was discussed in the section above on mental health and wellbeing. It is worth noting here that stress, of course, also affects physical health with proven links to many conditions.

In some cases, either the caring responsibilities themselves, or the anxieties associated, had led to severe sleep deprivation which is also linked to many physical health conditions. Other carers emphasised the exhaustion, the "draining" nature of caring, and the rare opportunity for respite.

The physical demands of caring were also mentioned. Most commonly these included soreness and muscle pain/strain resulting from lifting or providing physical support.

"[I have] sore shoulders from lifting my daughter, stiff, a bit arthritic."

Female, 35-54, Caring for child under 18

"I get tired and sore [using the hoist]".

(Another) Female, 35-54, Caring for child under 18

Finally, in some cases, caring had affected carers' physical health by acting as a barrier to regular exercise.

In a few exceptional cases, carers reported that caring had not affected their physical health. These carers tended to emphasise that the effects of caring were solely mental and emotional – which they differentiated from their physical health.

Impact of Carer's Allowance Supplement on physical health

Regardless of their physical health, carers generally felt CAS had no real impact on it. Among carers who had conditions for which they were receiving treatment, CAS had no impact on those. Meanwhile, although it had helped relieve financial worries a little and allowed some carers to take short breaks, overall it had not had a significant impact for those with chronic exhaustion or stress.

However, there were a few exceptions where carers felt CAS had positively impacted their physical health. Most commonly, this was where CAS helped them to afford healthier food, such as fresh fruit and vegetables, that they might not otherwise have been able to afford.

In other cases, CAS had been used to pay for more adequate heating in winter, which these carers said they would otherwise have gone without.

Among those that were generally more physically fit and active, CAS had sometimes helped support their exercise hobbies and examples included participating in a boxing competition and affording a consultation with a coach on weight-lifting technique.

In another case, CAS had been used to directly aid a physical difficulty where a carer had been able to use CAS towards back and knee support items which they would not have been able to afford without it.