Dementia Rainbow

what does it mean for trans older people living with dementia?

We have been incredibly lucky to have five trans and gender diverse participants living with dementia volunteer to join our SAGE Dem study. Nearly all of these participants are living in residential aged care. We think that this is the largest group of trans and gender diverse people living with dementia to ever be recruited into a research project internationally, so we feel intense responsibility for making their stories visible in ways that the participants want them to be. We’re not quite ready to do this yet, but we wanted to mark today by thinking about a trans vision for dementia.

One trans woman with lived experience on our advisory group said, ‘Empathy isn’t enough, you can’t understand what it’s like to have lived through what we’ve lived through.’ How do we move from here, beyond empathy? What does that look like in a context and community of care?

When I asked Jennifer what she needed from those who provided her with care, she said, ‘I just need them to take me as they find me.’ This beautifully captures what two Canadian academics, Silverman and Baril (2021) talk about in their paper Transing Dementia.

At the start of their paper, Silverman and Baril challenge the idea of ‘forced continuity’ – that is, that someone has to stay the same pre- and post- dementia. To change in the context of dementia is usually represented as a loss and even ‘akin to death’. Silverman and Baril argue that this connection between dementia, change and loss is associated with ableism, ageism and cognitivism. In other words, adaptive changes to identity and self that we see in people living with dementia are only seen as negative because they are associated with an older person with a cognitive disability. Indeed, ‘biological disruption’ (Bury, 1982) is expected when someone has a chronic illness or acquired disability.

Anyone working in social care will be aware that supporting someone’s sense of self, their personhood, is an underpinning concept. In a dementia context, Kitwood’s (1997) conceptualisation of personhood is almost cliche. It challenges the medical model of dementia by focussing on the importance of the personalised aspects of care. And maintaining personhood or selfhood, as Silverman and Baril prefer (we can have multiple selves but multiple persons not so much) is usually done by referring to a pre-dementia likes, values and preferences. There are lots of critiques of personhood, in particular that it does not go far enough to reposition people living with dementia as active citizens and agents. Instead, dementia citizenship scholars argue that personhood is conferred on people living with dementia, rendering them passive.

For Silverman and Baril’s purposes this passivity is particularly focussed on personhood retaining ‘biographical continuity.’ And you’re probably starting to predict how transing dementia fits in here. They argue that this biographical continuity is a form of cisnormativity. In other words, the assumption that everyone is cisgender and cissexual (cis: an element that is on the same side) and has not experienced a gender or sexual transition (or gone ‘beyond’ the one side, as etymology reminds us) permeates social life, health care and indeed understandings of experiences of sex and gender: ‘Cis normativity disallows the possibility of trans existence and trans visibility.’

Dementia studies has already found the idea of ‘queering’ dementia useful. Here we are not referring to queer in terms of sexuality, but rather as a way of thinking about things that disrupts what is normal and abnormal and allows us to think about things being different in the world. Transing dementia does a similar thing:

‘we propose that transing dementia gives us permission to value fluidity, transition, and transgression and has the potential to dismantle ciscognonormativity…This approach, which values fluidity and change and is based on trans-affirmative, crip-positive, and anti-ageist principles, can serve as a basis for reconceptualising the self with dementia. Even though this approach was initially designed for trans people with dementia, it can be applied to anyone with dementia…in order to lead us to a notion of selfhood that is both fluid and changeable (Silverman and Baril, 2021, p.7)

So if we return to Jennifer’s statement, ‘I just need them to take me as they find me,’ we can see that what she is asking for isn’t empathy, it’s to be seen. It’s to be seen as a woman with a particular body that needs particular supports. It’s to be treated with respect and kindness. And for the most part, this is what Jennifer has found in residential aged care.

References

Kitwood, T. (2009). Selection from Dementia reconsidered: the person comes first

Silverman, M., & Baril, A. (2021). Transing dementia: Rethinking compulsory biographical continuity through the theorization of cisism and cisnormativity. Journal of Aging Studies, 58, 100956.