Abstract
With limited advancement in the development of treatments to prevent or halt the progression of dementia, welcome attention is now being directed to the sphere of “care” for people already living with dementia, specifically the integration of social and health care and possible benefits of integration for people with dementia, their families, and caregivers.
Ethics approval has been granted for an exploratory qualitative study focusing on dementia within the developing integrated care system (ICS). Integrated Care (IC) will be explored from the perspectives of social care and health care practitioners, managers and commissioners working in statutory and voluntary and community sector organisations in the north Midlands area of England.
The study is part of a programme of work being developed for a National Institute for Health and Care Research Applied Research Collaboration (NIHR ARC) Dementia Fellowship in the field of social care. A range of stakeholders have been involved and engaged with this study and have stated their support for it. These are: the Social Care Research EngagemEnt (SCREEN) Group – a collective of academics and practitioners who lead on the social care research strategy for a local NHS Foundation Trust; academics from the researcher’s own institution; and an externally facilitated Public Contributors Group. Public Contributors included people with lived experience of caring for a friend or family member with dementia.
Comments from Public Contributors highlighted the importance of carers and the need for research/services to build a better understanding of how to support staff/relatives to understand and navigate existing systems; issues of lack of effective communication between services that lead to pitfalls in care; and the value of research to explore the inter-relatedness of health and social care. Several Contributors expressed an interest in staying connected with the programme of research through membership of a PPIE (Patient and Public Involvement and Engagement) group.
This study will use semi-structured interviews and focus groups with practitioners to explore aspects such as what meaning is given by practitioners to the term IC; what will IC offer people living with dementia in respect of what care will now look like, whether people will have greater control over care provided, the effect of changes on meeting people’s needs and resulting outcomes; and perspectives on the impact of IC at team level including how practitioners work together.
Provisional findings will be presented and discussed, and future directions for research will be indicated. It is hoped that findings will make a contribution to knowledge about the place of dementia in ICSs in England.
Findings will be disseminated through local academic and practice networks to support understanding of practitioner perspectives and inform development of IC practices in dementia; through a stakeholder event; through PPIE networks; and through publication outputs.
This work will inform other work strands being developed by the NIHR ARC dementia research fellowship programme in the West Midlands and will be a basis for developing grant applications to further explore the impact of IC approaches from the perspectives of people with lived experience of dementia.