Dementia in the LGBTIQ+ community

Inclusive reporting

The acronym LGBTIQ+ is used here to refer to a diverse population of people who identify as lesbian, gay, bisexual, trans/transgender, intersex, queer, and other sexuality (including asexual), gender, and bodily diverse people. There is no single LGBTIQ+ community, rather a range of identities and experiences which may change over time. Other variations of this acronym exist and may vary depending on the groups or issues being discussed and the available evidence. In much of the research included on this page people with innate variations of sex characteristics (often referred to as intersex) were excluded due to small sample sizes. As such the acronyms used in this resource reflect the research conducted. 

LGBT people with dementia may experience unique challenges to living with memory problems directly related to their sexual orientation and/or gender identity. This can include forgetting who knows about their sexual orientation and gender identity and being unsure about who to trust with this disclosure (Cousins et al. 2021). They are less likely to have children, or be married, and more likely to live alone. Due to this, and potential isolation from their family of origin, LGBT people are more likely to have chosen family who may not be recognised within the context of healthcare decisions (Department of Health and Aged Care 2019; Fredriksen-Goldsen et al. 2013b).

While there is limited research and data available on LGBTIQ+ Australians living with dementia, international research has begun to explore the rate of dementia prevalence and look more closely at dementia risk factors that are higher among LGBTIQ+ communities; recognising that ageing in these communities has a separate set of challenges not experienced by all Australians. For more information on LGBTIQ+ communities see AIHW’s LGBTIQ+ topic page.

Why are LGBTIQ+ communities more at risk?

Multiple studies, largely international, have looked at potential risk factors for dementia in LGBTIQ+ communities, by using the modifiable risk factors (health behaviours that can increase or decrease the risk of developing dementia) for dementia as a guide. LGBTIQ+ communities may be more likely to have:

  • poorer mental health and physical health
  • elevated stress
  • social isolation
  • subjective cognitive decline defined as self-reported cognitive problems (Fredriksen-Goldsen et al. 2016; Lambrou et al. 2020; Saunders et al. 2021).

Some communities may be at even more risk due to higher rates of risk factors including bisexual people (La Roi et al. 2019; Rosenberg et al. 2021b; Saunders et al. 2021) who may experience more discrimination from members of their own community (Chan and Leung 2023; Rosenberg et al. 2021b) and transgender and gender diverse people who may experience increased:

  • drug and alcohol use
  • smoking
  • unemployment/ underemployment
  • verbal, physical and sexual violence (Brady et al. 2023; Hill et al. 2020; Rosenberg et al. 2021a).

Subjective cognitive decline may be the first sign of a future dementia diagnosis. Some studies have shown people that report subjective cognitive decline are more likely to receive a dementia diagnosis compared with people that do not report subjective cognitive decline (Lee et al. 2020). Connection and belonging has been shown to reduce risk factors for dementia including depression and poor physical health (Fredriksen-Goldsen et al. 2013a). Maintaining an active social life in itself is a protective factor against dementia. 

A fear of accessing healthcare may impact the diagnosis of dementia among LGBTIQ+ communities (LHA 2022). The We are still gay report details past experiences as common concerns for the interviewees and highlights the struggles faced by many participants to secure service providers and carers that the interviewees felt safe with (Crameri et al. 2015). The report draws on research by two studies conducted by the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University.  

The LGBTI Dementia project documented the experiences and needs of LGBTI people living with dementia and the Trans Ageing and Aged Care project documented trans people’s experiences of ageing and aged care, including their experiences of dementia. The findings of these projects reinforce that gender diverse people often fear accessing healthcare due to prejudicial treatment and refusal of care altogether (Latham and Barrett 2015). See Sandra’s story of their experience.

Care and support services

A range of frameworks, programs and resources have been developed in Australia recognising the LGBTIQ+ population as a priority group among those with dementia and more broadly in the ageing population. More information is available on the government's commitments through the Aged Care Diversity Framework (Department of Health and Aged Care 2017) and other complementary frameworks on the Department’s website. The National policy response to dementia explores more of the policy changes to Aged Care as they relate to dementia in Australia following the Royal Commission into Aged Care.

In July 2022, the Department of Health and Aged Care released the Specialisation Verification Framework to support aged care consumers to find services that meet their specific needs. The framework sets out the criteria for specialised care delivery. Aged care providers who deliver specific services that meet diverse needs may apply for specialisation verification including LGBTI specialisation.

Sandra’s story

Born in the UK and recorded male at birth, Sandra was married with three children. The family immigrated to Australia over fifty years ago. As the breadwinner, Sandra worked in engineering whilst their wife kept the home and raised their children. In their early sixties, after the death of their wife eight years prior, Sandra affirmed their gender as female. Finally living their authentic self as a transgender woman, Sandra was diagnosed with dementia several years later. 

After living at home with dementia successfully for some time, there came a time when the police found Sandra after she got lost on a walk. Sandra was returned home to her son, prompting a call to Dementia Support Australia (DSA). Sandra’s cognitive ability had declined substantially. Their love for singing and dancing had been impacted by experiences of disinhibition, hallucinations, suicidal thoughts, as well as poor personal hygiene. Sandra was becoming a different person. Some days they would refer to themselves as a man when distressed and would become abusive and argumentative. Sandra’s son was desperate for support, but Sandra refused care from anyone else.

The DSA Consultant visited Sandra and their son at their home and provided a very practical and detailed approach to supporting them both when agitation and aggression become a concern. The DSA Consultant also assisted with access to further medical assessment and treatment, as well as information about home care or residential support options. Sandra’s son was relieved to have a plan moving forward. He felt supported. 

Fast forward a year and a half, and DSA received another call requesting support. Sandra had moved from community to residential care (after twenty years living at home). Sandra continued to experience increasing agitation and aggression; they had been disturbing other residents, and on several occasions had been physically aggressive towards them. With a formal pain assessment suggesting Sandra was experiencing mild pain, the DSA Consultant recommended pain management for Sandra’s chronic and acute conditions. A DSA Medical Specialist also provided a new medication plan, following a detailed review. To help Sandra’s mood and engagement, activities that affirm their gender and engage them in their previous interests were suggested, along with an interactive plush dog, brokered by DSA, to address Sandra’s love for dogs.

With new strategies in place, care staff reported Sandra making great progress, despite a couple of incidents, possibly triggered by changes to her environment. The DSA Consultant continued to contact the care home for updates and provide further support. Several months on, Sandra was much more settled, with no further aggressive behaviours directed at others, and care staff were comfortable with supporting Sandra through various engagement strategies. Sandra’s quality of life had significantly improved; they found joy and fulfilment once again, living their authentic self. 

Story provided by Dementia Support Australia. Client name has been changed for confidentiality.

A new way to collect information

In 2021 the Australian Bureau of Statistics (ABS) released the Standard for sex, gender, variations of sex characteristics and sexual orientation variables 2020. The 2020 Standard replaces the previous version (ABS 2016) with updated sex and gender variables, and introduces new variables for variations of sex characteristics and sexual orientation. The four variables included in the 2020 Standard, when cross-classified with other variables, can provide comprehensive data on a particular topic, issue or population group. The new Standard can be used by other government, academic and private sector organisations in their own statistical collections to improve the comparability and quality of data. The Standard will begin to be used in a small number of ABS household-based surveys and this will increase over time (ABS 2021).