Person- and carer-centred respite care for people with dementia: developing methods of evaluating the effectiveness of different models

SPRU research team

• Hilary Arksey
  
  

External collaborators

• John Bond, Institute of Health and Society, Newcastle University
• Claire Bamford, Institute of Health and Society, Newcastle University
• Julian Hughes, Institute of Health and Society, Newcastle University
• Lynne Corner, Institute of Health and Society, Newcastle University 

Project summary

Background

Respite care is one of the key services available to support people with dementia and their carers, but there are concerns about the quality and suitability of respite care. To ensure that respite care is a positive experience for both the person with dementia and their carer, the government has invested £635 million since 1999. This has stimulated a range of innovative models of respite care including home-based day care, short ‘holiday’ breaks and outward bound breaks. However, little is known about the effectiveness of these different models of respite care. Although the aims of individual respite services vary, a fundamental priority for all services is to provide care that is person-centred (i.e. focuses on the needs of the person with dementia) and carer-centred (i.e. focuses on the needs of the carer). Developing tools to assess person- and carer-centredness offers a new approach to evaluating respite care. The tools developed will have the potential to improve the quality and effectiveness of respite care.

Aims

The overall aim of the study was to develop practical tool(s) for evaluating person- and carer-centredness which could be used across a range of respite care services for people with dementia and their carers. Within this broad aim, the study had three objectives:

• to identify the range of models of respite care and describe how these are implemented in practice;
• to develop an understanding of person- and carer-centred care and how it is operationalised in different models of respite care from the perspectives of people with dementia, carers and service providers;
• to iteratively develop and test practical tool(s) for evaluating person- and carer-centred care.

Methods

The project was divided into four distinct work packages:

• Desk-based research including a national telephone survey which identified and described the range of models of respite care for people with dementia.
• Focus groups and individual interviews with front-line health and social care workers, providers, people with dementia and carers which clarified the meanings of person- and carer-centred care in the context of different respite care models.
• Identification and development of tool(s) which evaluated person- and carer-centred care.
• Comparative case studies in up to ten respite care and short term break settings which iteratively tested existing and newly developed tool(s) to evaluate components of person- and carer-centred care across a range of models.

Outputs

The main output is the report to SDO. Short reports were produced at the end of each work package. Information about the evaluation tool(s) will be disseminated widely through professional and academic journals, and conference presentations.