What is the carer experience really like?
Understanding the gap between policy guidance and carer experience across neurodegenerative conditions
What are we trying to find out?
In this study we are going to look at how we can better support carers. A family member or friend who provides care to someone with a neurodegenerative condition (such as dementia or Parkinson’s disease) is often referred to as a carer. Carers play a vital role in supporting these individuals. To help them in their role, carers need to be able to access appropriate support. There is research on what support carers say they need and some research on how to provide that support. There is also guidance on what support should be offered. However, carers do not always receive what should be offered. In this project we will try to understand the gap between knowledge and guidance on supporting carers and the support carers actually experience. We will use this information to develop recommendations for improving support.
Why is this important?
Caring has an impact on carers’ well-being. Sometimes this can be negative, causing carers to feel stressed or overwhelmed. To reduce any negative impacts, it is important that carers have easy access to, and receive, good support. There can be lots of services that offer support to carers. Yet it can be hard for carers to know what is available and how to access it. Some carers may find that because of where they live there is not much support on offer. Others may feel the services are not for people like them or that services do not suit their needs and preferences.
How are we going to do it?
The project has several stages:
- To begin with we will consult with stakeholders and patient and public involvement groups about the design of the project.
- We will speak to carers to find out what helps and what prevents them from getting the support that is recommended in guidance.
- We will review what is known about carers’ support needs across several neurodegenerative conditions to see where needs are shared or unique and where there are gaps in knowledge.
- We will undertake a review of the latest evidence on the interventions recommended in guidance so we can see how helpful they are.
- Lastly, we will bring all these findings together and work with stakeholders to generate evidence-based recommendations to improve support for carers.
Who is involved?
This project is led by Professor Jan Oyebode and Dr Catherine Quinn (University of Bradford). The project team consists of:
Dr Sahdia Parveen and Dr Maria Caulfield (University of Bradford)
Professor Linda Clare, Professor Claire Hulme and Dr Catherine Charlwood (University of Exeter)
Rachel Litherland (Innovations in Dementia)
Two experts by experience.
How will we share our findings?
We will
We will write up our recommendations in project reports and in journal articles. We will produce accessible summaries of our findings and use creative methods to present the information, such as infographics. We will share our findings through social media posts, webinars and podcasts. Findings will be incorporated into teaching and learning materials for health and social care staff.