Our article, ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’, which is currently ‘online first’ awaiting publication in the journal Dementia: The International Journal of Social Research and Practice, is available for free to all for a limited time. The article 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.
The full text of the article can be downloaded in pdf format from the Dementia journal webpages on the Sage Journals website. Download your copy now!