Best practice for the LGBT community living with dementia to come to the UK

A Queen’s Nurse from Cornwall has been given the opportunity of a lifetime; to travel to Australia next month and to learn more about how dementia affects the lesbian, gay, bisexual and trans (LGBT) community, and how their best practice can influence care in the southwest.

Best practice for the LGBT community living with dementia to come to the UK

Allison O’Kelly, a Clinical Lead for Memory Services in East Cornwall, from Cornwall Partnership NHS Foundation Trust (CFT), developed an interest in the LGBT community living with dementia after working with a trans-woman who developed Alzheimer’s disease, and who became confused and distressed about her identity.

Through her own research, Allison found that currently in the UK there are just small, limited pockets of interest into this group of people. Although interest is growing in the UK, Australia is leading the way in providing excellent training and services for the LGBT community.

People living with dementia can experience a range of challenges; many of these will not be affected by the person’s sexual orientation or gender identity, however, there are certain challenges that LGBT people with dementia are likely to face. For example, if they have encountered prejudice or discrimination from professionals or services they may not want to access services, or they may feel uncomfortable being open about their sexual orientation or gender identity around professionals.*

Allison, who is from a family of nurses, knew that she wanted to take her research to Australia to better the LGBT community in Cornwall, so applied for a Winston Churchill Memorial Trust (WCMT) fellowship award. After being shortlisted and interviewed in Westminster in January 2018, she was selected to take her studies overseas. Over 1,000 people applied for the award.

The WCMT carries forward Sir Winston Churchill’s legacy, by funding UK citizens from all backgrounds to travel overseas in pursuit of new and better ways of tackling a wide range of the current challenges facing the UK. Successful applicants are known as Churchill Fellows for life.

Along with BILLO Studio, a film production company who will be creating a documentary based on Allison’s findings and the LGBT community with dementia, Allison plans to meet, learn and witness best practice from a range of experts and trainers in Australia.

Whilst travelling, Allison and BILLO will meet LGBT elders and people with dementia, along with their families and carers to understand their experiences, meet with key figures in the LGBT and dementia community, and attend professional conferences. From her research Allison hopes to learn more about the challenges the LGBT community face, including risks and signs of suicide, and to develop tools and frameworks to deliver as a training package for care staff in Cornwall.

Across Cornwall there nearly 300 care homes which Allison hopes would benefit from her training. “We are an aging population and there are a growing number of people in Cornwall who are both LGBT and over 65. It so important we get our care and services right for them” commented Allison.

“Many older people who identify as LGBT lived through a time when it was a criminal offence, so kept themselves hidden. It is really important for people to be who they want to be and to change attitudes; my Winston Churchill quote for my interview was Attitude is a little thing that makes a big difference

“My vision is for all health services in Cornwall to be LGBT inclusive. There is the potential to incorporate training into GP practices and for primary care nurses to be LGBT aware. I hope that this will encourage people who identify as LGBT to engage in health screening and prevention programs without fear of judgement or prejudice.

“Already my Chief Executive, Phil Confue, has agreed to include my training in the new staff induction and then in mandatory training updates” added Allison

Previous work Allison has completed includes an article on those in the LGBT community living dementia, which was published in the Journal of Dementia, both in the UK and Australia, which is considered recommended reading by the Social Care Institute for Excellence (SCIE) and has been involved with the LGBT+ and dementia project by the Alzheimer’s Society.