What is the study about?

Since 2019, we have been exploring inequalities (differences) and inequities (unfair differences) that are experienced by people living with dementia and their family carers. We have looked at inequalities and inequities that exist in the type and quality of care provided, and what happens to someone in the years following their diagnosis.

Our main DETERMIND study has shown that people from particular groups can experience difficulties accessing dementia care. So we have started this ‘sub-study’ to DETERMIND (the sub-study is a smaller research project taking place within the larger DETERMIND project). By doing this sub-study, we want to better understand how we can ensure care is inclusive and allows the best quality of life for everyone who is part of the LGBTQIA+ community. 

We understand that LGBTQIA+ voices haven’t been sufficiently included in our research, or wider research, in the past. Therefore, the team is committed to making sure our research feels safe to take part in and making sure that LGBTQIA+ voices are heard throughout the study.

Who can take part?

We would like to recruit 150 people who are LGBTQIA+ and have been diagnosed with dementia. The study welcomes anyone who is part of the community, including people who self-identify. We will honour, respect and celebrate people of all identities who wish to take part, which may include people who are:

• Lesbian

• Gay

• Bisexual

• Transgender, including those who have self-identified

• Queer* / Questioning

• Intersex

• Asexual

• ‘+’ anyone not listed in the LGBTQIA acronym, but who still identifies as part of the community

  *While the term ‘queer’ has been reclaimed by some, often younger, members of the community, we must acknowledge that older members of the community may remember the word as a derogatory slur. This means that the word may be upsetting and uncomfortable for people. We have included it within the LGBTQIA+ acronym as it is embraced by some people today as an umbrella term to describe those who are not heterosexual (straight) or cisgender (people whose gender identity is the same as the sex they were assigned at birth).

Those who take part can choose to be supported by a friend, family member and/or chosen family member for their interview.

What does taking part in the study look like?

• A pair of researchers from our team will visit you in your home or somewhere where you feel comfortable. They will ask you a range of questions about your experiences, your health, your memory and your wellbeing. You can read about the research team members who might visit you on our Take Part page.

• A friend, family member and/or chosen family member can also take part in the study and support you through it.

Our visit will take approximately two hours. Sometimes the visit will be longer, sometimes it will be shorter, but we will work around your schedule to accommodate your needs. If you’ve had enough of answering questions at any point, we can stop the visit. There are no right or wrong answers - we just want to learn from your experiences.

Unfortunately, we cannot pay people for their time taking part in the study.

Why is the study important?

By hearing about the experiences of the LGBTQIA+ community, we can start to:

• Address inequalities in the dementia care pathway

• Encourage inclusive care and support for everyone

• Allows the best quality of life for people living with dementia and those who support them

Through this project, we will work closely with government and charities to advise on better policy and research across the UK and beyond.