We are celebrating pride week at the library and will be keeping on theme with this week's fact vs. fiction post. We will be discussing dementia and aging in the 2SLGBTQ+ community. Although dementia touches all people, there are specific disparities that the 2SLGBTQ+ population faces, both earlier in life and later, that create differences in the dementia experience and in care experiences.
Fact #1: 2SLGBTQ+ older adults experience health disparities and unique challenges when accessing dementia care services.
Although outcomes and attitudes have been steadily improving for many years, this is still true. Many 2SLGBTQ+ people were born into a world that criminalized their joy and existence. This alone can create fear in accessing formal services. Additionally, there are certain policies in place and gaps in understanding that can lead to negative outcomes or create unnecessary barriers to receiving quality care.
Stigma can also contribute to barriers to accessing appropriate care. Care and end-of-life planning is an important aspect of dementia care, but fear of stigma in disclosing one's sexuality may leave out the personal support network in this process. This can put a significant burden on the person with dementia as well as the support network, and create an end-of-life plan that is not what was desired or a care plan that does not integrate existent supports. 2SLGBTQ+ older adults living with dementia are more likely to live alone (60%), not have a partner (65%), not have children (72%), and not have a caregiver (65%). Given the importance of social interaction and support, this is concerning. So, incorporating non-traditional support networks is especially important!
There are many areas of health in which 2SLGBTQ+ people experience disparities throughout their lifespan. Some of these disparities are also risk factors for dementia. These include higher rates of depression, alcohol and tobacco use, vascular disease, and HIV/AIDS. Members of the 2SLGBTQ+ community are also less likely to engage with preventative screenings, often leaving problems undiagnosed for longer. Addressing these disparities is a long process, but being aware of them is the first step.
When it comes to policy, it may seem that policies are always inclusive at a first glance. However, in a review of 14 homecare policy documents, only two specifically mention 2SLGBTQ+ seniors. At first, it might seem that a lack of specific policy indicates equality. However, this is not necessarily the case. Not including policies can leave space for discrimination and needs that may be unique to this population. Definitions of the family typically do not include friends, but many members of the 2SLGBTQ+ community have a found family. Their supports are friends rather than a formal spouse, children, or siblings. Recognizing these individuals in policies regarding family and visitation can create a more inclusive environment and help to limit social isolation.
Federal health policy typically mentions 2SLGBTQ+ people in HIV/AIDS and other STI-specific initiatives and typically only in regards to men who have sex with men. Although this is important, there are many other policies that should be addressed. Additionally, many formal policies are still using a gendered language where this is unnecessary (e.g "he or she" when "they or the individual" would suffice, "husband or wife" instead of "spouse). Creating inclusive policies involves doing away with outdated language, leading us to our next myth.
Myth #1: Inclusive language does not matter in elder care.
Inclusive language always matters, and cultural competency surrounding the 2SLGBTQ+ community is important in elder care. As we develop treatments for AIDs and move towards a more inclusive society, more Queer people are living long enough to become older adults, and are more willing to be out and proud.
Small things, such as asking if the person has a partner, rather than a husband or wife, can create a greater sense of trust in the medical community. This gender-neutral language leaves space for an individual to choose to disclose and can suggest that the practitioner is aware. Similarly, using gender-neutral pronouns in reference to a person's partner until/unless their pronouns have been already specified limits the barriers to allowing supports to be in place.
Similarly, using the correct name and pronouns and being willing to explicitly name lesbian, asexual, gay, bisexual, transgender, etc. needs creates trust. Being misgendered is a painful experience that is common within healthcare settings, so it's important to be aware of this.2SLGBTQ+ communities have always been here, and as society shifts and it is safer to be visible and healthcare needs are met the numbers of out older adults is increasing. People with dementia and other older adults are not all cisgender and heterosexual, and acknowledging this in our language remains important.
For more information on how to support inclusive services for older adults in the 2SLGBTQ+ community visit https://open.alberta.ca/publications/aging-with-pride-a-guide
Resources Consulted
https://www.alz.org/help-support/resources/alzheimers-and-dementia-resources-for-lgbtq-commun
https://www.alzheimers.org.uk/blog/pride-month-chris-maddocks-living-as-lgbt-person-dementia
https://www.scie.org.uk/dementia/living-with-dementia/lgbt/
Mule, & Smith (2014). Invisible populations: LGBTQ people and federal health policy in Canada.