Inclusivity: LGBTQ+ & Dementia

As Pride Month comes to a close at the end of June, and Disability Awareness Month begins, we thought this would be a perfect time to consider the impact of living with a disability for queer people.


We're unsure of the exact figures, but government data suggests that 5-7% of the UK population is Lesbian, Gay or Bisexual (LGB), and this excludes data for those who are transgender (T). With these figures we can estimate that there are currently over 70k LGBT people in the UK who are currently living with dementia, and this doesn't account for caregivers or partners. This number is likely to increase in coming years as more people are diagnosed with dementia and people feel socially empowered to publicly identify their sexuality.



A 2020 study by the Lancelot Commission identified the following risk factors for developing dementia:

  1. Physical inactivity

  2. Smoking

  3. Excessive alcohol consumption

  4. Air pollution

  5. Infrequent social contact

  6. Obesity

  7. Hearing impairment

  8. Depression

  9. Diabetes

  10. Hypertension

  11. Less education

  12. Head injury

Trans people are four times more likely to experience depression, and 1 in 3 LGBT adults experience mental illness (compared to 1 in 5 heterosexual adults). 15% of LGBT adults have alcohol or drug disorder, with LGBT people more likely to smoke than heterosexual people. LGBTQ people are more likely to live alone, be single and less likely to have children – therefore reducing social interaction and resulting in being more likely to rely on formal care in later life.


All of the above factors, compared with the dementia risk factors, suggest that LGBTQ+ people are at a higher risk of developing dementia than heterosexual people.



Someone's dementia journey is individual and will be different in each person, as is it affected by their life experiences. For example, a white cis-gender heterosexual woman who has been married to a man for 35 years and has 3 children will have had a very different life to a single Asian gay man with no children who may have experienced years of prejudice and discrimination.


Therefore, as their memories begin to fade and they are taken back in time their experiences will be very different. For an LGBTQ+ person living with dementia, as their brain takes them back in time to previous memories – this may mean they are taken back to a time before they came out; before it was legal/safe to be queer; or a time before they transitioned. If someone lived through electric shock therapy, what would it be like to re-live this? Or to live with the anxiety of having to 'come out' again and again?


Many LGBTQ+ people live alone and without children, or may not have contact with their biological families. Some LGBTQ+ individuals may experience hostility from their faith or cultural community. This means that many LGBTQ+ people won't have what is considered to be a traditional support network around them, and there is likely to be an increased pressure on their partner to provide care.


Some LGBTQ+ people develop a family of choice, made up of friends and community, which isn't always recognised in clinical settings as a next of kin.



FEAR OF LOSING IDENTITY


For a trans person there are fears of which ward they'll be placed in if they need to go to hospital (e.g. male/female wards), or whether their gender identity will be respected. There may be fears about which clothes they'll be placed in, or whether their birth name will be used. There may also be added fears of whether other hospital residents will accept them.


LGBTQ+ couples may:

  • Find that their partner is assumed to be a sibling;

  • Find that their partner is ushered out of the room and not respected as a spouse;

  • Feel uncomfortable holding hands with their partner in clinical settings, especially if staff are from different cultural backgrounds and appear disapproving.



MEMORY LOSS


An LGBTQ+ person may not remember whether they have 'come out' and this may generate constant anxiety and fear. As dementia progresses a person my not be able to continue to hide their sexuality and accidentally 'out' themselves, or their partners. This may cause problems if their family, friends or community are not accepting.


Memory regression may mean that someone forgets that they ever came out; they may no longer recognises their partner; or forget they transitioned - making going to the toilet difficult. Past experiences of discrimination and harassment may cause a person to feel at risk, even in a safe space.


If someone has experienced prejudice, discrimination and rejection - reminiscence activities may not feel comfortable.


It is important to understand the co-morbidities of inclusivity and disability, and how they can directly impact one another. Is the service you offer, or environment you provide, inclusive to the LGBTQ+ community, those living with dementia, or both?


Get in touch with us to discuss how to improve inclusivity within your business. Everyone at DanSmith.Design are Dementia Friends and Dan is a Dementia Friends Champion.


Opening Doors is a national organisation that supports LGBTQ+ people over the age of 50, who provide further support for LGBTQ+ people living with dementia.


Instagram icons_transparetn.png