Dementia and Intimacy: Love, sex, and secrecy in the context of informal dementia care

Abstract

This project explores how informal carers make sense of intimacy with a partner living with dementia. To do this it analyses three datasets. These include grey literature, comprised of 19 online educational resources and 10 newspaper articles; 21 chat threads from an online forum; and secondary analysis of 14 qualitative interviews with informal carers. The methodological approach is interpretivist, borrowing from Facet Methodology (Mason, 2011) to illuminate insights into various aspects of informal carers’ experiences. The thesis has two primary parts. First, feminist scripting perspectives (Simon and Gagnon, 1986; Jackson and Scott, 2010a), are combined with Swidler’s (2013) work on love to engage with the grey literature and forum datasets. This analysis considers how heteronormativity pervades the educational resources available to informal carers looking for support with changes in their intimate lives, associated with dementia. In doing so, forms of ageism and ableism, which construct an image of asexualised people with dementia, are identified. Implications for this are explored in the forum data, wherein it is identified that constrictive aspects of compulsory, or institutionalised heterosexuality (Jackson, 2006), can limit the ability for some women to reframe their intimate relationships along a more ‘formal’ care dynamic. The latter part of the thesis deploys an analytical framework around the concepts of secrecy and deception, by drawing upon the work of Goffman (1959, 1974), and Simmel (1950). This part uses the interview data to highlight the complexity of deploying secrets and fabrications associated with dementia care, in the context of ongoing intimate relationships. It is argued that the gender dynamics of heteronormativity run through secrecy practices in the context of intimacy, identified here as ‘gendered styles of concealment’. These are disrupted when secrecy practices associated with contemporary interpretations of person-centred care, here labelled ‘compassionate fabrications’, are introduced into the relational biography of some carers. Concealment and fabrication are often used to restore a familiar gendered dynamic. In doing so, however, some carers experience a radical shift in their gendered sense of self, creating a feeling of ontological instability. Overall, the influence of heteronormative intimacy is associated with a radical sense of personal and relational rupture, with important implications for some informal carers’ ability to engage with wider civil society. Policy and practice around providing support for informal carers needs to show greater sensitivity to this important aspect of informal carers’ everyday experience.

Date of Award	23 Jun 2023
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Brian Heaphy (Supervisor) & Andrew Balmer (Supervisor)