Dementia Rainbow

Why I’m writing this blog

Over the last year, I’ve been travelling around Australia talking to LGBTQ+ people living with dementia and their care partners. I feel so honoured and privileged to be invited into people’s homes to share some of their precious lives. I’d like to use this blog to share some of the stories, moments and insights from our work with you.

This in-depth qualitative research is the first part of a a four-year Medical Research Futures Fund (MRFF) project, SAGE Dem, that aims to co-design a model of care for LGBTQ+ people living with dementia.

People living with dementia, particularly LGBTQ+ people, are often excluded from research, particularly co-design processes. So the aim of the first 18 months of the project is to visit a diverse group of LGBTQ+ people living with dementia and their care partners to understand what they want and need to live well and what’s currently helping or hindering that.

We’ve developed an inclusive ethnographic toolkit which aims to include people at all stages of dementia, from those who can articulate their story using speech to sensory, participatory and observation methods for those who no longer use speech to communicate.

We also visit people multiple times, which has proven to be essential for understanding the incredible changes that people living with dementia can experience in a short period of time. Changes that are not only due to their dementia, but also due to other disabilities related to ageing, housing, finances and relationships with carers.

So far we’ve visited over 20 people living with dementia, from the Northern Territory to Tasmania. Despite our original ethics assuring anonymity, the first few people who we visited said, ‘We don’t want to be anonymous, we’ve worked hard to be visible. I’m proud to be included here.’ For trans folk, this was particularly resonant – ‘This name has been hard won.’ We went back to ethics to allow people be visible.

This blog is part of that visibility. Academic outputs can take a long time to happen and are not always visible to everyone. I will share some of the stories, but also some of our more general insights from the project about dementia, LGBTQ+ ageing and research ethics.