21/16 – Improving support for adult and/or older carers supporting document
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)
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.
- PGfAR NIHR201076 - Adapting and testing an intervention for carers of people with dementia-CARECOACH. CI – George Fox; Start date 01/04/2021; End date 30/09/2026
- Kupeli N, Candy B, Sampson L, et al How do informal carers experience and maintain compassion? A systematic review. PROSPERO 2019 CRD42019134233
- Saw E, Kay-Lambkin F, Fitzpatrick S, et al. What support and interventions exist for informal carers of people with anxiety and depression? A systematic review. PROSPERO 2020 CRD42020147742
- Talbot R, Clibbens N, Berzins K. What works to support informal carers experiencing a mental health crisis: a realist evaluation. PROSPERO 2020 CRD42020197313
- RfPB PB-PG-1014-35062 – Family based support to build capability and resilience in family carers of adults with learning disabilities and challenging behaviours: collaborative research. CI – Tina Cook Completed 2019
- RfPB PB-PG-1216-20022 - Development, refinement, and acceptability of an educational intervention for informal carers of patients with breathlessness in advanced disease (Learning about Breathlessness Study 2: LaB2). CI – Morag Farquhar Completed 2020
- PRP PR-R14-1215-21008 - Supporting carers following the implementation of the Care Act 2014: eligibility, support, and prevention. CI – Jose-Luis Fernandez Completed 2019
- PRP PR-R14-1215-21005 - Implementing the Care Act 2014: Preventing, reducing, or delaying needs for care and support in adult social care in England. CI – Jerry Tew. Completed 2020
Further on-going and completed studies identified that applicants may find useful are listed below.
- RfPB PB-PG-0418-20001 - Online Acceptance and Commitment Therapy for family carers of people with dementia: A feasibility study of a new mode of delivery (iACT4CARERS). CI – Naoko Kishita; Start date – 01/09/2019; End date 31/08/2021
- RfPB NIHR201093 - Evaluation of the feasibility of a RCT of Empowered Conversations: a training to enhance relationships and communication between family carers and people living with dementia. CI – Lydia Morris; Start date – 01/01/2021; End date 31/12/2022
- RfPB NIHR200078 - The Care Companion - Impact of an Interactive, Online Personalised Resource For Enhancing Carer Resilience, Well-Being and Sustainability: A Real World, Mixed Methods Study. CI – Jeremy Dale; Start date – 01/10/2020; End date 02/04/2022
- RfPB NIHR200058 – Measuring the social care outcomes of people with dementia and their carers. CI – Stacey Rand; Start date – Sep 2019; End date - Sep 2021.
- RfPB NIHR200720 - Children with OCD: Identifying Acceptable Support Strategies for Parents (CO-ASSIST). CI – Rebecca Pedley; Start date – April 2020; End date – Sep 2021.
- PRP NIHR202259 - The impact of Care Act Easements under the Coronavirus Act 2020 on co-resident older carers of partners with dementia. CI – Philip Drake and Debora Price; Start date – Feb 2021; End date Jan 2022.
- RfPB NIHR201852 – Suicidal ideation, homicidal ideation, and self-harm in parent carers. CI – Siobhan O’Dwyer. Start date – April 2021; End date – April 2023
- PRP NIHR201707 - One-to-one Peer support for family members and friends of patients treated under the mentAL health act (OPAL). CI – Domenico Giacco and Stefan Priebe. Start date – March 2021; End date Aug 2023.
- PDF-2015-08-035 – EFFIP (E-support for Families and Friends of Individuals affected by Psychosis): A randomised controlled trial of a co-produced online intervention for carers. CI – Jacqueline Sin; Start Date – 01/01/2016; End date 31/12/2020
- HS&DR NIHR129491 - Improving the support for older people with learning disabilities and behaviours that challenge others, family and professional carers, and end of life care planning for carers. CI – Sara Ryan; Start date 01/09/2020; End date 28/02/2023
- HS&DR 18/01/01 - Addressing psychological morbidity in informal carers at the end of life: evidence synthesis and stakeholder consultation to produce tailored, evidence-based information and priorities. CI – Gunn Grande; Start date 01/07/2019; End date 31/12/2020
- HS&DR NIHR129528 - Care Under Pressure 2: Caring for the Carers – a realist review of interventions to minimise the incidence of mental ill-health in nurses, midwives, and paramedics. CI – Jill Maben; Start date 01/09/2020; End date 30/04/2022
- HTA 08/14/99 - The START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the effectiveness of a manual based coping strategy programme in promoting the mental health of carers of people with dementia - cohort follow-up. CI – Gillian Livingston; In-editorial
- HS&DR NIHR129645 - What are the barriers to young carers accessing carer support services and/or services for the recipient of care, and what interventions and support services are acceptable to these groups and the persons they look after? CI – Nicola Brimblecombe; Start date 01/01/2021; End date 31/12/2022
- PHR NIHR130194 - A randomised controlled trial and feasibility study of the effects of an e-health intervention ‘iSupport’ for reducing distress of dementia carers, especially in the ongoing pandemic of COVID-19. CI – Gillian Windle; Start date 01/01/2021; End date 31/12/2023
- RfPB PB-PG-0613-31064 – Behavioural Intervention for Stroke Carers (BISC). CI – Marion Walker. Completed 2018
- RfPB PB-PG-0317-20044 - Healthy Parent Carers programme: feasibility study of a peer-led group-based intervention to improve the health and wellbeing of parent carers of disabled children. CI – Christopher Morris. Completed 2020
- RfPB PB-PG-0609-19025 - Does a proven intervention to improve functioning of carers also benefit the anorexia nervosa sufferer for whom they care? A pilot study of our Expert Carer Helping Others (ECHO) intervention. CI – Janet Treasure. Completed 2015
- RfPB PB-PG-0909-20188 - What do carers of patients with cancer & advanced progressive illness find burdensome during the final year of life; how might this be alleviated by the adoption of an alert system. CI – Barbara Jack. Completed 2013.
- RfPB PB-PG-0609-19059 - Development and Evaluation of an Intervention to Assist Lay Carers to Provide Physical Care to Family Members with Cancer at End-of-Life. CI – Karen Luker. Completed 2014.
- PfGAR RP-PG-0611-20010 - Development and evaluation of strategies to provide longer-term health and social care for stroke survivors and their carers. CI – Anne Forster. Completed 2019
- PRP 054/0006 - National Evaluation of the Expert Carers' Programme. CI – Sue Yeandle. Completed 2011.
- PRP NIHR200692 – Representativeness of Adult Social Care Surveys. CI – Margaret Blake. Completed 2020
- PRP PR-ST-1116-10001 – Shaping Personalised Outcomes – how is the Care Act promoting the personalisation of care and support? CI – Catherine Needham. Completed 2019
- DRF-2015-08-071 – The involvement of family and friends in inpatient Mental Health Care: What do patients want? CI – Aysegul Dirik Completed 2018
- HSDR 14/154/07 - Evaluation of specialist nursing support for carers of people with dementia. CI – Gillian Parker. Published 2019
- HS&DR 08/1210/024 - Review of the literature on the problems and barriers to access to health care for carers, and effective interventions available to address variations. CI – Hilary Arksey. Published 2004
- HS&DR 08/1109/015 - Mental health scoping exercise research on services to support carers for people with mental health problems. CI – Hilary Arksey. Published 2002
- HS&DR 08/1109/198 - Patients’ and carers' experiences of continuity of care in long term conditions and the relationship of continuity of care to outcomes. CI – Tom Burns. Published 2008
- HS&DR 08/1613/144 – To complete the development and testing of the carers’ and users’ expectations of services – carers’ version. CI – Paul Lelliott. Published 2009
- HS&DR 08/1311/053 – Enabling partnerships in carer assessments: the way forward. CI – Mike Nolan. Published 2008
- HS&DR 08/1311/047 – Measuring outcomes for carers for people with mental health problems. CI – Tom Burns. Published 2005
- HS&DR 08/1411/081 – Measuring outcomes for carers of people with mental health problems – continuation. CI – Tom Burns. Published 2005
- HS&DR 08/1309/048 – Respite services for carers for people with dementia. CI – Hilary Arksey. Published 2004
- HS&DR 08/1511/113 – User and carer-centred respite care for people with dementia: developing methods of evaluating the effectiveness of different models. CI – John Bond Published 2009
- HS&DR 08/1819/218 – Dignity in practice: an exploration of the care of older adults in acute NHS trusts. CI – Winifred Tadd Published 2011
- HS&DR 04/07/06 – Systematic review of the literature on respite care for the frail elderly. CI – Christine Shaw. Published 2009
- HTA 99/34/07 – Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. CI – Georgina Charlesworth Published 2008
- HTA 04/07/01 - Respite care for frail older people: an appraisal of effectiveness and cost effectiveness. CI – Anne Mason Published 2007
- HTA 08/14/06 – The START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the effectiveness of a manual based coping strategy programme in promoting the mental health of carers of people with dementia. CI – Gillian Livingston Published 2014
Other on-going studies
- Francis S, Chandler R, Stubbs B, et al. A systematic review and narrative synthesis of the roles and experiences of informal carers when involved in the chronic pain management of older adults. PROSPERO 2020 CRD42020183060
- Karambelas G, Filia K, Byrne L, et al. A systematic review comparing caregiver’s burden and psychological impacts in caregivers of individuals with schizophrenia spectrum disorders and bipolar disorders. PROSPERO 2019 CRD42019120815
- Munro M, Kennedy C, Paterson C. A systematic review exploring the experience of informal adult carers supporting individuals with substance misuse issues. What service support and interventions exist, and do they influence psychosocial outcomes? PROSPERO 2017 CRD42017080062
- Luxon L, Onwumere J. A systematic review of carer peer interventions in severe mental health conditions. PROSPERO 2020 CRD42020219720
- Watt B, Witt S, Gordon S, et al. A systematic review on group creative arts interventions for informal caregivers of adults: a narrative synthesis. PROSPERO 2020 CRD42020218177
- Vseteckova J, Horne J, Smith L, et al. A systematic review on the barriers and facilitators to physical activity in informal / unpaid carers worldwide. PROSPERO 2020 CRD42020184196
- Jenkinson C, Peters M, Sriram V. Informal carers' experience of and outcomes of assistive technology use in dementia care in the community. PROSPERO 2017 CRD42017082268