In late January the ADS team was pleased to welcome Phil Harper (they/them), Senior Lecturer in Health and Social Care at Birmingham Newman University, who delivered an online session looking at an ‘Introduction to LGBTQ+ and dementia care and research considerations’. Phil has previously been involved in an HDRC (Housing and Dementia Research Consortium) webinar exploring issues relating to housing and care provision for LGBTQ older people back in 2020, so it was great to have them back to share their knowledge with the team.
To set the scene for us, Phil started the session by reminding us that we are a diverse community, therefore it is vital to consider people individually based on their own identities and needs. They also raised the issue of micro-aggressions which are subtle forms of discrimination such as the use of outdated terminology, or using images and approaches that enforce heterosexual norms and so can be exclusionary. The importance of considering individual experiences was also discussed in order to reduce the risk of triggering painful or negative memories, such as growing up in a time when someone’s lifestyle was illegal.
Phil also highlighted that it’s important to acknowledge that people don’t live in silos, so we need to consider other factors in people’s lives such as ethnicity, age and disability which can have their own associated needs and inequalities.
To demonstrate the relevance of these points, Phil linked them back to different research practices to help us understand how to be more inclusive, for example thinking about how we capture someone’s identity in interviews or questionnaires to avoid ‘othering’ people. We also need to ensure that we include diverse perspectives at all stages of the research process to help us get terminology correct and know how to meet individual needs, as well as making sure that findings are appropriate and inclusive.
Thinking more about existing research, Phil raised some of the issues with early studies on Trans and dementia, and how our evolving understanding is challenging some of the previous findings. They also got us thinking about how dementia can have an impact on people and potentially enable them to perform their gender in a more authentic way if they become disinhibited and feel more able to express themselves.
An important point highlighted by Phil was how people’s identity can be affected by the social context, as it may change how safe people feel to be their authentic self, how they present themselves, and what they are willing to share with others. Having dementia in addition to this may exacerbate people’s fears and add to the emotional labour involved in constantly adapting to their environment such as a care setting. We therefore need to make both the physical and social environments inclusive to reduce people feeling that they need to modify who they are and potentially risk having their identity erased in the process.
Phil moved on to share some of the emerging themes from a study they are currently working on, ‘The Space Between Non Binary and Dementia’. Phil and co-lead Daithi Clayton, with support from John Hammond, have presented their work at various conferences such as Alzheimer Europe in Helsinki, and an overview of the themes can be seen in the image below.
The session concluded with Phil sharing advice on how to be an ally, offering suggestions on ways that we can fix a microaggression that was unintentional, and reflecting positively on the increasing number of Pride events taking place in care homes and housing schemes. There was time at the end of the session for the team to reflect and ask questions on how to make our work more inclusive in the future. Thank you Phil for your time and advice, it was greatly appreciated.
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