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“It’s a maze the system, a terrible maze!”

Posted in Dementia Project News, and Social Care Reform

A new research article by Elizabeth Peel and Rosie Harding has been published ‘online first’ in Dementia: The International Journal of Social Research and Practice. ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’ explores data from both the ‘Duties to Care’ and ‘Dementia Talking’ dementia projects to highlight the experiences of familial carers of people living with dementia in navigating the complex health and social care systems that provide support for people living with dementia.

In the article, we discuss the findings from our questionnaire, focus groups and interviews with carers of people living with dementia that relate to service provision. Our analysis identified three themes in carers’ talk about such services: 1) that services are a ‘maze’; 2) that services construct their boundaries in such a way as to be frustratingly limited; and that 3) carers used “battle” and “fighting” talk to describe their experiences of ‘the system’. Overall, our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work  they undertake.

Findings from this research demonstrate that family carers of people with dementia often struggle to access support from ‘the system’ that is valuable to them and helps them to carry out their caring role effectively. Participants in this study constructed health and social care service provision for people with dementia as unknown, impenetrable, and confusing. Many of our participants also drew on discourses of ‘luck’ rather than entitlement, to describe when support was accessed that assisted them in their caregiving role. Carers who described their experience as ‘lucky’ were generally those for whom high levels of support or public funding had been made available to support the people they care for. This suggests that they system itself may lack transparency or equality, and that carers are unclear about their rights or entitlements to services.

In the article, we argue that there needs to be greater access to advice and support that will help informal carers navigate the increasingly complex range of private, third sector and public service providers that comprise the contemporary health and social care system. The difficulties that carers report in accessing services to help them in their vital role must be taken seriously by policy makers. Importantly, methods of providing easy access to appropriate support, guidance and services for carers need to be made central to plans for reform of the social care sector.

The article can be downloaded from Dementia: The International Journal of Social Research and Practice by those with a subscription to the journal. Please do feel free to contact either Professor Elizabeth Peel on e.peel@worc.ac.uk or Dr Rosie Harding on r.j.harding@bham.ac.uk for further details or a copy of the article.

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