Caring for someone with dementia - the experience of carers catalyst film
This film was developed for health services to use as part of an experience-based co-design (EBCD) process. EBCD is a patient-centred quality improvement process, and if you are planning to implement it in your organisation we recommend you use the online EBCD toolkit to guide you. The Point of Care Foundation is also developing a learning programme on EBCD supported by NHS England. We anticipate that it could also be used as part of an experience-led commissioning process. The film is a ‘trigger’ film which is intended to get local people, patients, families and NHS staff talking together about how they can jointly improve people’s experience.
If you plan to show this film, we suggest the person facilitating the session use the following introduction to set the scene.
This film was put together from analysis of a national sample of 31 people talking about their experiences of caring for someone with dementia. Researchers at the University of Oxford collected interviews with people all round the country, many on video, some audio or written only. They present findings from these interviews on the patient information website healthtalk.org The interviews are not just about NHS care but also much wider experiences for example the personal impact of being a carer, about making decisions, and the difficulties of acting on someone else’s behalf. For this project, we looked again at the whole interview collection and this time pulled out specific themes around experiences of services and ‘touchpoints’ (points of contact with the NHS).
Obviously these are not people from your local area and everybody has a different experience, though some patterns do start to emerge from looking at many stories. Some of the things they say you may think aren't relevant to local services or what happened to you. But our hope is that listening to them will help you reflect on your own memories and spark some ideas for what could be done differently here.
As well as illustrating some particularly good aspects of care that made all the difference to people, the film also includes some more negative experiences. It’s important to remember that we can also learn a lot from looking at when things went wrong and what could have been done to make that a better experience. Even when people are largely positive about their experiences, one damaging bad moment can colour the whole thing.
This film was made with funding from the ESRC [grant ES/L01338X/1] ; Secondary analysis of qualitative video health experience interviews to inform policy and practice - what matters most to users about quality of care. The original interview study on which it is based was supported by Alzheimer's Society, Department of Health, ETHOX and Omega Foundation
Analysis for the original study was undertaken by Clive Baldwin and Rachel Miller. Re-analysis of the interviews for this trigger film was undertaken by Susan Kirkpatrick.