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Unique challenges for LGBTQ+ people with dementia

Rachel Johnstone from Dementia UK on the challenges LGBTQ+ people with dementia may face and how Dementia UK is helping.

June is Pride month, and this year marks 51 years of the Pride movement in the UK. Although we have come a long way in tackling stigma in this time, a new report by the charity Stonewall – LGBT in Britain: Health Report – shows that discrimination, hostility and unfair treatment in healthcare services are still commonplace.

Discrimination, whether perceived or actual, can stop LGBTQ+ people from accessing the health and social care services they need. According to the report, one in seven LGBTQ+ people, including more than a third of trans people, have avoided treatment for fear of prejudice.

The Bring Dementia Out programme from the LGBT Foundation suggests that there could be as many as 68,000 LGBTQ+ people living with dementia in the UK.  

A couple at home reading a leaflet about Dementia

LGBTQ+ people living with dementia and their carers may face unique challenges. For example: 

  • Heteronormative language (language that suggests that heterosexuality is the norm) can make people less likely to disclose their sexual orientation and prevent them developing a trusting relationship with health and social care professionals. To avoid making assumptions, it’s important to use terms such as ‘partner’ instead of ‘husband’ or ‘wife’ 
  • The fear of discrimination can mean that people are driven to conceal their sexual or gender identity, which can lead to challenges around next of kin and the inclusion of loved ones in decisions about care  
  • Looking at someone’s family history – an important tool in dementia assessments – may bring up painful memories of broken relationships in the past where someone hasn’t been accepting of the person’s sexual orientation, gender or trans status 
  • LGBTQ+ people may have been affected by discrimination and hostile attitudes in the past, including from health, social care, and other professionals, or from support groups they have participated in. If a person feels isolated by both the diagnosis of dementia and their sexual orientation or gender identity, they are likely to feel especially vulnerable 

Opening up conversations

Understanding someone’s sexual orientation and gender identity will help to improve the delivery of person-centred care, but it is important to understand that while these may be an important part of who they are, it is not their whole identity.   

The LGBT Foundation and NHS England have produced a good practice guide to help professionals open up conversations around sexuality, gender and trans status, which professionals may shy away from for fear of causing offence and uncertainty about how and what to ask.