|Author(s):||Helen Weatherlya; Francesco Longoa; Rita Fariaa; Kate Gridleyb; Fiona Aspinalc;|
|Institution(s):||a Centre for Health Economics, University of York; b Social Policy Research Unit, University of York; c University College London;|
|Production date:||February 2023|
|Acknowledgements:||We are grateful to the ESSENCE project advisory group for their helpful comments on earlier versions of this case summary.|
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In the UK 2011 Census, approximately 6 million people defined themselves as informal unpaid carers.1 NHS England report around 540,000 carers of people with dementia in England and estimates that 1 in 3 people will care for a person with dementia in their lifetime.2
The estimated economic costs associated with dementia in England are £24 billion, of which 42% is attributable to informal unpaid care.3 Carers of people with dementia often give up substantial amounts of working hours, experience deterioration in their own physical and mental health, experience social isolation and financial worries thus leading to many follow-on costs not yet fully accounted for in these estimates.
Whilst legislation is in place that requires governments to assess carers’ needs and help arranging support,4 few publicly funded services exist nationally that offer specialist support for this population.
One example is Admiral Nursing, which is a dementia specialist service delivered by Admiral Nurses in the UK. Admiral Nurses are registered community mental health nurses who specialise in dementia care. Admiral Nursing is developed and supported by the charity Dementia UK and it targets support for carers of people with dementia.
This summary presents findings from an exploratory economic evaluation of Admiral Nursing, based on data from a survey of 346 carers in 34 areas in England in 2016/7.
More research is needed to understand potential costs and benefits of Admiral Nursing.
Informal or unpaid carers provide essential support enabling people with dementia to continue living in the community. Without their support, people with dementia may need to live in long-term care facilities away from their family and network of friends. Different types of services are available across England to support carers. Admiral Nursing is the only specialist nursing dementia service with a focus on supporting carers.
The economic evaluation5 presented in this case summary sought to explore the benefits and costs of specialist support for carers of people with dementia using the largest such service in the UK – Admiral Nursing – as an example.
The research was undertaken to inform service delivery, organisation, practice, and commissioning of specialist support for this population.
Admiral Nursing is a service which provides psychological support, expert advice, and information to help carers and families affected by dementia understand and deal with their thoughts, feelings and behaviour, and to adapt to their changing situation.
Developed and supported by Dementia UK, and commissioned by some English Local Authorities, the service is provided by specialist dementia nurses who have mental health expertise. They focus on supporting carers of people with dementia, and thereby help people living with dementia stay independent for longer. They work in local community services, GP practices, NHS hospitals, care homes and hospices, and run a national helpline and offer virtual appointments.
The Nurses seek to improve the quality of life for people living with dementia and their carers by training them how to live positively with the condition and to develop skills to improve communication and maintain relationships. In addition, they seek to join up different parts of the health and social care system, signposting to relevant services and enabling the needs of carers and people with dementia to be addressed in a coordinated way.
Admiral Nurses provide consultancy and education to other professionals working with people with dementia and their carers, to support best practice and improve dementia care in a variety of care settings.
Findings from the economic evaluation presented in this case summary5 suggest that Admiral Nursing can successfully target people with the most complex needs and that the intervention might reduce the needs of carers over time. To our knowledge there are no other economic evaluations of this service.
Outcomes for carers using Admiral Nursing measured in the form of carer-related quality of life, subjective wellbeing, and self-efficacy and confidence in managing dementia symptoms, were similar or better compared with carers who did not use Admiral Nursing once differences in carer and care recipient characteristics were accounted for. It is important to account for these differences because the population receiving Admiral Nursing is on average more likely to be older, unwell and looking after people with more severe dementia, reflected, for example, in higher number of hours reported spent on caregiving.
In interviews and focus groups with 35 carers of people with dementia we heard how the support they get can influence their health, quality of life and confidence in caring. Carers value continuity of support and ‘feeling supported’. Having contact with a professional who understands dementia and has the time to get to know their situation could improve carers’ confidence and help them to feel supported.
In-depth interviews with 20 key professionals found that the wider impact of services like Admiral Nursing are not well understood.
Findings from the economic evaluation presented in this case summary5 are, to our knowledge, the only cost-effectiveness findings available for the Admiral Nursing service. The findings showed that whilst outcomes (carer’s quality of life, subjective wellbeing and confidence) were the same or better for carers who received the service, the costs of health and social care services (comprising hospital service use, GP, nurse and therapist health care appointments, social care service use including home care, day care, meals, social worker appointments and memory café sessions) were similar across the two groups.
An Admiral Nurse was costed as a Nurse Band 7 including qualification costs of £52 per hour or at £13 based on the average contact of 15.5 minutes, based on a nurse located at a GP practice (costs were inflated from Curtis et al6).
The economic study presented in this case summary5 is the first attempt to fill the evidence gap for specialist nursing provided for carers of people with dementia. It is a challenge to identify and recruit carers of people with dementia to research projects given the substantial caring role involved in supporting a person with dementia. Therefore, the study used a one-off survey of carers of people with dementia.
Our conclusions about differences between outcomes for carers with and without Admiral Nursing are not definitive. The study achieved its aims; however, it would be useful to examine the impact of interventions such as Admiral Nursing over time to understand their effect on resource use, costs and outcomes for carers of people with dementia, and for those that they care for.
Given the underdeveloped state of knowledge about the costs and effectiveness of support for any type of carer, this research represents a substantial step forward.
Admiral Nursing services vary in their composition, remit, funding models, case mix and other key characteristics, although they all work to a core set of values to support carers and family members of people with dementia. Some are commissioned and/or hosted by the NHS, whereas others are commissioned and/or hosted by local authorities or third-sector organisations.
The services are currently found in memory assessment services, community Admiral Nursing teams, care homes, hospitals, palliative and end-of-life care settings and third-sector settings. The service also runs a national helpline (Admiral Nursing DIRECT), which was established in 2008 and was staffed by an additional 31 nurses at the time the research was carried out.
For further information on the project, the link to the full report is cited below.4 There are lots of other research projects examining services supporting people with dementia, for example the IDEAL project and DETERMINED which include an economics component.
Dementia UK reports recent publications of studies involving specialist nursing support for carers of people with dementia specifically, https://www.dementiauk.org/for-professionals/research-and-publications/2020-publications/, but we are not aware of any of these studies having an economic component.
Longo F, Faria R, Parker G, et al (2019) Investigating the economic case of a service to support carers of people with dementia: A cross-sectional survey-based feasibility study in England. Health and Social Care in the Community 27(5), e734-e743
Gridley K, Aspinal F, Parker G, et al (2019) Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study. Health Services Research and Delivery 7(12).
Gridley K, Aspinal F, Parker G, et al (2018) Supporting carers of people with dementia. A mixed methods evaluation and feasibility study. York: Social Policy Research Unit, University of York.
NIHR School for
Social Care Research