A new study conducted as part of the DETERMIND cohort at Brighton and Sussex Medical School (BSMS) has provided critical insights into the experiences of lesbian, gay, and bisexual (LGB) individuals diagnosed with dementia. This exploratory research, the first of its kind, aimed to examine the peri-diagnostic experiences of LGB individuals, focusing on their interactions with diagnostic services, support post-diagnosis, and the unique challenges they face as members of the LGBTQ+ community.
Five participants, all diagnosed with dementia within the past year, were interviewed alongside their partner carers between August and December 2022. The study revealed that trusted partners and carers played a pivotal role in recognising early symptoms, as many participants did not initially identify their memory issues as problematic. This reliance on others is particularly significant as LGBTQ+ individuals are statistically more likely to live alone and lack traditional family support networks, highlighting the need for more targeted awareness campaigns within these communities.
Listen to Ben and John discuss the study in the video below.
The research also revealed that despite participants placing importance on their LGB identities, most chose not to disclose their sexual orientation to healthcare providers during the diagnostic process. This reluctance stems from concerns about potential bias, as well as a belief that sexual orientation was irrelevant at the early stages of care. However, participants acknowledged that disclosing their identities might become crucial as their care needs increase, to ensure they receive LGB-inclusive care.
Interestingly, participants reported no significant barriers when accessing diagnostic services, in contrast to earlier studies that highlighted concerns over discrimination. However, the study noted that participants were based in liberal, metropolitan areas, and further research is needed to assess the experiences of LGB people in more conservative or rural settings.
The study also emphasised the need for healthcare professionals to be more proactive in discussing sexual and gender identity with patients, suggesting that training could improve communication and help provide more tailored, person-centred care. The researchers noted that while this small study offers valuable insights, more extensive research is needed, particularly involving diverse LGBTQ+ individuals, including those with different socio-economic backgrounds or living outside major cities.
John Hammond, PhD student at BSMS and lead author of the study said: “This research is a significant step in addressing the underrepresented experiences of LGB individuals with dementia. Our findings highlight the need for both an increased awareness of dementia symptoms within LGBTQ+ communities, and for open discussions about sexual and gender identities in dementia healthcare settings. The findings can also be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway and to ensure that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia.”
Dr Ben Hicks, Research Fellow in Dementia Studies at BSMS and co-author added: “As dementia diagnoses continue to rise globally, this research calls for increased attention to the unique needs of LGBTQ+ individuals, ensuring they receive appropriate support and care that respects their identities throughout their healthcare journeys.”
The study is published in the International Journal of Geriatric Psychiatry.
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