University of York
Evaluation of specialist nursing support for carers of people with dementia
Alzheimer's disease & other dementias
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. Methods and analysis: WP 1. Secondary analysis of ANs 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.