Evaluation of specialist nursing support for carers of people with dementia
Award Number
14/154/07Programme
Health and Social Care Delivery ResearchStatus / Stage
CompletedDates
1 November 2015 -31 October 2017
Duration (calculated)
01 years 11 monthsFunder(s)
NIHRFunding Amount
£301,832.72Funder/Grant study page
NIHRContracted Centre
University of YorkContracted Centre Webpage
Principal Investigator
Professor Gillian ParkerPI Contact
gillian.parker@york.ac.ukWHO Catergories
Economic Impact of DementiaModels across the continuum of care
Disease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 69 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | 14/154/07 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20151101 |
| End Date | 20171031 |
| Duration (calculated) | 01 years 11 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University of York |
| Contracted Centre Webpage | |
| Funding Amount | £301,832.72 |
Abstract
The first workplan will be a secondary analysis of AN’s existing database to examine how AN service type, input and service users’ characteristics and needs affect outcomes (objective 1). AN will provide an anonymised data set, with 22500 AN service user records since 2005. We will prepare the data set for analysis, carry out a range of uni-, bi- and multi-variate (regression) analyses, and establish the links between type and intensity of AN input, service user characteristics and needs, and outcomes. This will also inform subsequent stages. WP 2. Qualitative development work with carers in two areas with an AN service and two similar areas without a service will establish a data collection framework and processes for WP 3 (objective 2). Interviews and focus groups will identify outcomes important to carers, and test the acceptability and feasibility of collecting data about these (via standardised measures) and resource use, to enable cost-effectiveness research in WP 3. This is vital, given the acknowledged challenges of evaluative research in dementia care. WP 3. Using this data collection framework, we will carry out a study of costs and effectiveness in areas with and without AN services. This will use innovative health economic methods and analysis (instrumental variable approach(22) developed in a similar field – residential care for older people where challenges of conventional evaluation also arise (objective 3). WP 4. Specialist dementia services’ effects may extend beyond individual outcomes and resource use. Qualitative interviews with health and social care stakeholders in two areas with and two without AN services will explore the perceived system-wide impact of such carer services, as against ‘usual care’ (objective 4). Analysis will use the Framework Approach(18). WP5: Working with AN, and based on the data collection framework designed for WP 3, we will design a data collection framework to be implemented in AN (and elsewhere). Best evidence guidance: A stakeholder workshop will present findings and develop best evidence guidance. Outcomes and impact: (1) better service commissioning and delivery is a potential outcome of the best evidence guidance; (2) health or social care providers supporting carers of people with dementia could establish the cost-effectiveness of their services if they use our data collection framework of tested acceptability and feasibility; (3) the partnership with AN will build research capacity in this third sector organisation to be further developed when the project is over.
Plain English Summary
Without unpaid carers partners, family member and friends health and social care services could not care for people with dementia. We have evidence about the effects of being a carer for a person with dementia, but still do not know how to provide specialist support to carers effectively and efficiently. NIHR is keen to change this and we are responding to their wish to know more about support for carers. Admiral Nursing (AN) is the only dementia specialist nursing service for carers and has 65 schemes. The NHS, local authorities and voluntary organisations pay for and/or host AN services in different areas. While they are set up, run and funded differently, all AN services focus their support on carers. Research has described what AN services do and what carers think about them. However, this research did not look at how effective the services are, how much they cost or how they work with other health and social care services. Our research will try to answer the question: What are the costs and benefits for carers of people with dementia and the health and social care system of providing specialist nursing support? We will explore this in different ways. 1. We will look at information that AN has collected about the work it does with carers, and its effect. AN has information about the support provided to over 20,000 carers since 2005. We will explore this to see what type of help leads to best outcomes for carers. 2. Although the AN information is valuable, it cannot answer all questions about costs and effectiveness that health and social care funders want. With the help of carers from four different areas, we will find out about the outcomes that are important to them and about different ways to collect information on these. We will talk to carers individually and in groups. We will then design a survey to collect this information and ask carers to test it out, before we use it in the next stage. 3. Health economists are interested in how effective services are, but alongside how much the services cost. This helps them give funders of health and social care evidence about the best ways to spend public money. We will explore this with a survey of carers – some receiving specialist support and some not. We will use the work done earlier to produce a simple and short questionnaire. The answers will help our health economists to assess both the effects and costs of support for carers. 4. Support may affect individual carers, but it is also possible that it has wider effects on health and social care services. For example, if carers are helped to care for as long as they want to, the person they support may spend less time in hospital or in residential care. We will talk to people who fund and provide health and social care services, in four different areas, about the effects they think support services for carers have. 5. We will work with AN to put in place a new way of collecting information about the carers they work with and the support they give them. This will help future research and help AN. We will test the system with one team before it is rolled out. 6. We will work with carers, health and social care services and funders and dementia organisations to draw together all our findings. We will then create guidelines about how best to support carers of people with dementia. Call to Action for Carers will support carers of people with dementia so that they are involved and have a voice throughout our work
Aims
1. Explore the processes, individual and system-wide impacts, and cost-effectiveness of specialist support for carers of people with dementia (using the largest such service – Admiral Nursing (AN) – as an exemplar). 2. Produce guidance to inform service delivery, organisation, practice, and commissioning of specialist support for such carers. Objectives 1. Explore relationships between the characteristics of carers and people with dementia, AN service type and input, and outcomes. 2. Develop and test data collection methods to allow subsequent cost effectiveness evaluation. 3. Explore the cost-effectiveness of AN, as against usual care 4. Explore the perceived system-wide impact of providing specialist support services for carers of people with dementia, as against usual care. 5. Implement new data collection methods in AN (and that could be used by others) to facilitate future research.