Gender neutrality in dementia care

The following blog is from Phil Harper, Associate Lecture at the University of Worcester who is currently studying for a Professional Doctorate at Manchester Metropolitan University where they are looking at understanding the needs of an LGBTQ+ person living with dementia. Here, they share their own views and raise some important questions to get us all thinking. Over to Phil:

When I was asked to write this blog for the Association for Dementia Studies on LGBTQ and dementia for LGBTQ History Month I struggled to decide what to focus on, there is so much to write about. Then it hit me, I have recently ‘come out’ as non-binary and this journey triggered a change in my research direction. I am now focusing on gender non-conformity and dementia. Why not have a rant, I mean discussion, around how gender neutrality is seen in dementia care?

Before I delve deep into my discussion, I will define what is non-binary. This is where an individual does not identify with the gender binary of man and women. My ‘coming out’ as non-binary was partly due to having time to think during lockdown and the realisation that the Western binary does not fit into my world view. Without getting too heavy so early on, I feel that binary is a form of population control where we are put into boxes (man and women) and then through social norms told how to act (I am very influenced by the work of Michel Foucault and more recently Judith Butler). Now how does this relate to dementia? I had time to reflect and I started to unpick my previous work, where I often advocated for gender neutrality for people living with dementia who ‘struggled’ to express their gender. But what if a person living with dementia is non-binary/gender non-conforming? Gender neutrality is not a failure to express their gender, but a valid identity.

This led me to think about the following questions:

1. Do we focus on symptoms too much in dementia care, instead of living in the moment? If we think about the work of Kitwood, Brooker, Feil and many other person-centred scholars, their message is always to ‘think of the person first and the dementia second’. We are becoming pretty good at this, however, sometimes we need to dig deeper and break free from heterosexual and cisgender norms to appropriately achieve this regarding sexuality and gender.
2. Do care staff know what non-binary means? I ask this, as when I tell people (especially people who are not LGBTQ) that I am non-binary they often need the identity explaining. If people do not know it exists, how can we expect people to appropriately support individuals who identify as it? Thankfully this is improving. Only recently on Drag Race UK (our community’s staple show, not without its issues but that’s another rant, for another day) there was a humbling discussion between two artists about their gender identity and being non-binary. This representation is sorely needed, and should be in even more mainstream media. This improved representation would create understanding and hopefully lead to less erasure and misunderstandings in care settings.
3. The media does not always represent transgender and non-binary people in the best light, especially when critical voices are shared. What impact does this have on the ageing population? Could this lead to internalised prejudice, and what impact could this have on a person living with dementia? If we think about the difficulties all LGBTQ people have faced in the past, could some of these critical voices trigger painful memories? How do we protect older LGBTQ people from these voices and allow individuals to be their authentic selves, especially in care settings?

I have seen so many fantastic incentives to improving the lives of LGBTQ people living with dementia, from care home Prides to charities highlighting the issue. However, much of the work, as with society, is still very binary-focused. Hopefully as the message about diverse gender identities becomes stronger so will our person-centred approach, moving away from gender neutrality as a symptom of dementia but as a valid identity. We often need to think outside our own experiences and embrace diversity.

I will finish this blog with one final point to get you thinking. Even if gender neutrality is a ‘failure’ to explore gender in that moment, surely being celebrated as opposed to managed is the best approach none the less.

Connect with Phil on Twitter @PhilliusFogg

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