August 19, 2020
By Stacey Rand, Research Fellow at the PSSRU
The most important source of support for adults living with long-term health conditions, illness and disabilities in the UK is the unpaid care provided by families and friends. There are at least 6.5 million carers in the UK, who look after relatives or friends. Around 9% of this unpaid care is by people outside of the family (friends or neighbours). The majority of care is provided by adult children, spouses/partners, or other relatives.
Caregiving may be very fulfilling and meaningful. However, it also places carers at increased risk to their health and wellbeing. Carers may find it difficult to balance caring with employment, education or other caring responsibilities, which may contribute to financial pressures. There is also increased risk of social isolation or loneliness, as it becomes difficult to sustain other family relationships and friendships. It may become difficult for carers to ‘switch off’ from caring, or to find the time and space to look after their own health needs (e.g. eating well, exercising or attending medical appointments).
In recognition of carers’ own health and wellbeing needs, the Care Act (2014) acknowledges that carers’ wellbeing is equally important to that of the people they support. There is a legal duty on local authorities to recognise, assess and meet eligible needs. This is part of a wider policy landscape where carers’ quality of life (alongside the quality of life of people with support needs) is as a key overarching aim of formal social care support, such as home care, day activities or short breaks.
There are a number of challenges, however. Many carers do not see themselves as ‘carers’. What they do is just part of existing family relationships. It may therefore be difficult for people to value their contribution as a ‘carer’ and think of the support they may need in that role. From the perspective of health and social care services, there may be reticence to proactively identify carers due to lack of specialist knowledge or resources to need the identified needs. As a result, despite efforts to place carers on an equal footing to care-recipients and the work of organisations like Carers UK to raise awareness, carers are often still not fully recognised or supported.
Due to these challenges, carers’ own needs may be easily overlooked – and so, it may be argued that it is important to understand the impact of caring on QoL and the effect(s) of formal support. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that is used to measure social care needs and outcomes. There are versions for carers (ASCOT-Carer) and the people they support (ASCOT). The ASCOT instruments have been used in care needs assessment, routine monitoring or formal evaluation of services, and as an overarching measure of the quality and effectiveness of the social care system in England.
This outcomes approach promotes the planning and delivery of support in a way that focuses on how it improves people’s lives. It enables a view of how well people’s quality of life is supported by social care services. It is making sure that formal care services are effective in promoting individuals’ quality of life by what they offer. However, due to the focus on individual quality of life, either of the service user or their carer, it may overlook that caregiving also takes place in a relationship between carer and care-recipient, and the way this also relates to the formal care services.
To address this, there has been research to explore how the social care quality of life outcomes may be understood at the dyad-level (the carer and care-recipient together), rather than individual-level. It has been found that some areas of quality of life, specifically, control over daily life, is influenced at the level of the dyad. What this means is, if you support one person (carer or care-recipient) to feel more in control of their daily life, then this ought also to influence the other person’s quality of life – in other words, you improve both people’s lives by supporting them together.
This raises the question of whether and how formal social care services could support carers and care-recipients together. This would involve developing a broader view of quality of life outcomes, thinking of the carer and care-recipient together.
There is a new study (the DYAD project) that will begin in September 2020, which will explore whether and how this approach could be taken in supporting older adult caregiving dyads. For further information see here.
Thank you to Helen Salisbury, Research Advisor, for her review and advice in the drafting of this blog post.
This blog reports independent research funded by the National Institute for Health Research School for Social Care Research. The views expressed in this publication are those of the author and not necessarily those of the NIHR SSCR, the National Institute for Health Research or the Department of Health and Social Care.