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21/16 – Improving support for adult and/or older carers supporting document

Contents

 

Supporting document for 21/16 Improving support for adult and/or older carers
Closing date: 5 August 2021 (two stage – Stage 1 to Stage 2)

Background

The Care Act 2014 strengthens the rights and recognition of adult carers within the social care system in England (reference: Carers UK. Care Act 2014 – Key provisions for carers, Carers UK 2014). In Wales, carers’ assessments are included in the Social Services and Well-being Act 2014; in Scotland in the Carers (Scotland) Act and in Northern Ireland in the Carers and Direct Payment Act (2002).

The NHS policy on carers has developed in recent years. The 2015/16 Planning Guidance for the NHS in England, Five Year Forward View into Action, sets out how NHS England expects to implement its duties, including that Clinical Commissioning Groups (CCGs) alongside local authorities draw up plans to identify and support carers, in particular carers who themselves are over 85, and provide care (reference: NHSE. The Forward View into Action Planning for 2015/16. National Health Service England 2014). The NHS Long Term Plan continues the policy focus on identifying and supporting carers by providing back-up support to carers in case of emergencies; working with carers from excluded and marginalised communities to improve their care; and encouraging national adoption of carer passports (a record identifying the carer) (reference: HSE. The NHS Long Term Plan. National Health Service England 2019).

The DHSC’s Carers’ Action Plan sets out the Government’s commitment to supporting carers through 64 actions across four priority areas (services and systems that work for carers; employment and financial wellbeing; recognising and supporting carers in the wider community and society; and building research and evidence to improve outcomes for carers).

Approximately nine million carers in the UK were unpaid before the COVID-19 pandemic. The pandemic has resulted in an additional 4.5 million unpaid carers, with 2.8 million balancing work with caring responsibility (reference: Carers UK comprehensive spending review). The value of support provided by carers is about £132 billion in terms of savings to health and social care budgets. This rise in numbers of unpaid carers may be linked to the increasing number of people aged 85 and over (the group most likely to need care and support); continued closure of care and nursing homes and the increased use of care at home (reference: Buckner L and Yeandle S. Valuing carers 2015. The rising value of carers’ support. Carers UK 2015).

In addition, according to a survey conducted by Dying Matters, 70% of people expressed a wish to stay in their own home, and to die at home rather than in hospital or a nursing home. This is likely to further increase the reliance on family members and friends. Care is provided in the context of a relationship with the recipient of care, and there are often under recognised reciprocal benefits of this dyadic relationship. Older carers often do not self-identify as carers and do not access assessments and services, making this a barrier if providing appropriate support and services (reference: National Institute for Health and Care Excellence (NICE). Supporting adult carers NICE Guideline 150). Approximately a quarter of older carers have been caring for a disabled adult son or daughter for most of their adult lives; and most of the cared for population are adults with learning disabilities.

In addition to the caring responsibilities, this group also has concerns about the future if they pre-decease their adult child or when they are no longer able to care (reference: Greenwood N, Pound C, Brearly S, et al. A qualitative study of older informal carers’ experiences and perceptions of their caring role. Maturitas 2019; 124, 1-7). Sandwich carers is another group of carers that is increasing in size and comprises carers supporting a very elderly parent, balancing caring alongside paid employment and providing support for adult children and sometimes grandchildren too (reference: Carers UK. Sandwich caring. Combining childcare with caring for older or disabled relatives. Carers UK 2012.)

Carers may have to give up or reduce paid employment, which affects their financial resources, independence, and wellbeing. The type, amount and quality of health and care service support available, whether publicly funded or otherwise, to unpaid carer varies widely across the UK. At times, even if support is available it may not be appropriate or affordable, and complex local systems can be difficult to navigate with limited guidance for the carers. The Carers UK's state of caring report 2019 (reference: Carers UK. State of Caring. Carers UK 2019, London),and the Government response to the 2016 carers’ call for evidence (reference: DHSC. How can we improve support for carers? Government response to the 2016 carers call for evidence. Department of Health and Social Care 2018.), (in advance of the Carers’ action plan 2018 to 2020) report clear evidence that many carers did not feel adequately supported and that, although caring can be immensely rewarding, many felt that they did not feel respected, valued and supported for the contribution they made.

The HS&DR meta-review (2017) found research on interventions to support carers of people with dementia was predominant, with some additional reviews of interventions to support carers with cancer, and with mental health problems. Multicomponent interventions were common in the reviews, with emphasis on psychosocial or psychoeducational content. The review identified:

  • caregiver support groups
  • telephone counselling
  • educational programmes
  • art therapy
  • meditation-based interventions
  • computer-mediated interventions
  • cognitive reframing
  • couple-based intervention
  • and psychosocial interventions but with limited evidence on effectiveness

Primary research is needed on the differential impact of interventions for the recipients of care and their carers, on the effectiveness of constituent parts in multicomponent programmes, and the types of respite (for carer, recipient of care or the dyad/family) in relation to outcomes that carers and recipients think are valuable and which are cost-effective (reference: Thomas S, Dalton J, Harden M, et al. Updated meta-review of evidence on support for carers. Health Serv Deliv Res 2017;5(12)).

A scoping review (2017) highlighted that the carer-related evidence base is complex and fragmented. The review not only focused on research evidence but also on wider knowledge, grey literature, expert testimony and reports, and bodies representing carer voices (reference: Henwood M, Larkin M, Milne A. Seeing the Wood for the Trees – Carer-related research and knowledge: A scoping review. Social Care Institute for Excellence 2017). The review focused on carer characteristics, experiences of carers, and the nature and duration of their caregiving including the impact of caring on their health, well-being, and employment, rather than on the effectiveness of specific service interventions.

This is supported by findings from the NIHR Policy Research Programme’s review of international evidence on support for unpaid carers. The review found consistent evidence for formal care services for people with care needs; training and education interventions; support groups and flexible working conditions. The review however, highlighted significant gaps in the evidence base with regards to some interventions, outcomes, and types of caring situation, including cost-effectiveness of interventions (reference: Brimblecombe N, Fernandez JL, Knapp M, et al. Review of the international evidence on support for unpaid carers. Journal of Long-Term Care, 2018; 25–40).

Relevant on-going and published studies

During the development of the brief the following completed and ongoing studies were reviewed that applicants may find useful.
(Please note that the studies identified in no way represent a full literature review and applicants should ensure that they review the completed and ongoing research in this area and explain how their proposal addresses a research gap)

The following studies identified are of particular relevance to the call. 

Further on-going and completed studies identified that applicants may find useful are listed below.

NIHR

Active

Completed/published

Other on-going studies