It is June, and for me as a queer person, that means one thing – it is Pride Month! You might be thinking “Jodi, what has that got to do with dementia research?”, and if so, this blog post is most definitely for you!
As a person who identifies as queer, I fear what the future looks like for me if I am diagnosed with dementia. I am not comfortable saying it, but I cannot deny that in this moment, I am disappointed and dissatisfied by the extent of the inclusion of minority groups within dementia research and associated discourse. Whilst many are aware and concerned about this important and neglected issue, in a scientific world where many researchers at every stage still conflate the concepts of gender and sex – sex being assigned at birth, gender being the societal presentation of your identity – are we really, truly, doing all that we can?
We really lack data on this topic, but what is there has predominantly come from the US, where more than 1 million LGBTQIA+ older adults are expected to be living with dementia by 2030, and current annual costs associated with care in this group surpasses $17 billion. The experiences of such individuals are massively affected by a lifetime of disparity and discrimination, which may in turn have led to them being more at risk of cognitive decline.
Such lifelong discrimination is multi-faceted, and wide-ranging, touching on everything from socio-economics to healthcare. Older LGBTQIA+ adults are more likely than their heterosexual, cisgender counterparts to have experienced family estrangement due to their identity, and be childfree, taking away major support groups who are normally involved in the day-to-day care of individuals living with dementia prior to the need for those individuals to be in more formalised care settings. Such care settings, for example healthcare and living communities for the elderly, have historically failed to meet the needs of LGBTQIA+ older adults, with some even unable to access such support due to living below the poverty line. Those who can access these may feel forced to “re-enter the closet” when they are in such facilities to not be subjected to possible discrimination and can face issues with partner involvement when that partner is of the same sex or does not conform to rigid gender norms. They may also postpone necessary treatment for fear of discrimination, which can be additionally burdensome for family caregivers. In some instances, LGBTQIA+ individuals are effectively invisible to helpful resources, due to a combination of these factors.
The impact of the AIDS crisis should also not be dismissed in the lives of many individuals we are seeing presenting with dementia at present. These individuals often lost many loved ones and experienced a tragedy greater than most of us can comprehend. A generation of queer individuals was forever damaged by this, and that population is now ageing into dementia, as are their caregivers. Some such individuals may be experiencing further discrimination due to their own HIV statuses, again compounding the lifelong discrimination that these individuals may have faced. These people represent one of the sub-populations experiencing even greater disparity, alongside transgender individuals, or those who are part of racial and ethnic minority groups.
The accumulation of these lifelong stressors can lead to complex internalised homophobia and related physical and mental health issues, which further contribute to disparities between those under the LGBTQIA+ umbrella, and cisgender, heterosexual individuals. Depression particularly represents an important related factor.
Similarly, much of the research work in dementia is framed around normative tropes of loss, decline and forgetting, which can be biased in their use of gendered language and heteronormative concepts, and require updating to be more inclusive. Accurate figures for LGBTQIA+ individuals do not exist at baseline in many countries so whilst disappointing, it is no surprise that it is currently impossible to source accurate data pertaining to the specific group of individuals who are both LGBTQIA+ and are living with dementia. This will doubtless improve with time but requires that those involved in dementia research and healthcare are provided with better education regarding this population and are exposed to as diverse a range of patients and people living with dementia as possible.
So, what can we do as people involved in dementia research and care? Good practice guidelines are not well-established in this space, but if we involve LGBTQIA+ people of all ages at all stages of practice shaping and policy making, we can improve on these as we go forward. There are significant factors of LGBTQIA+ experience that make these individuals at greater risk for dementia, but thankfully many of these are modifiable. As society becomes more accepting of differences from the cisgender and heterosexual norm, it is important that we increase discourse around the topic and consider how we can make changes in our own practice that make for a better experience for these individuals. Not everyone experiencing dementia holds the additional experience of lived LGBTQIA+ identity, but everyone who experiences dementia deserves to be treated with dignity and respect.
Dr Jodi Watt is a Postdoctoral Researcher at University of Glasgow. Jodi’s academic interests are in both healthy ageing and neurodegenerative diseases of older age, and they are currently working on drug repurposing for dementia. Previously they worked on understanding structural, metabolic and physiological brain changes with age, as measured using magnetic resonance imaging. As a queer and neurodiverse person, Jodi is also incredibly interested in improving diversity and inclusion practices both within and outside of the academic context.