Project AMM49

LGBT+ people and carers living with Dementia. Mainstreaming a Rights-Based research approach.

Research shows that LGBT+ people and carers living with dementia have distinct experiences. This research talks with LGBT+ people and carers to capture their experiences of revealing and celebrating identities and examples of addressing microaggressions and non-affirmative behaviour. 

 

Background

Globally the number of people with dementia is estimated at 55.2 million, with 944,000 people diagnosed in the UK (Alzheimer’s Research UK, 2023). There are no statistics on the number of LGBT+ people with dementia either globally or in the UK, although conservative estimates conclude that up to 10% of the total population identify as LGBT+ (Coffman et al., 2017)

Research shows that LGBT+ people and carers living with dementia have distinct experiences (Di Lorito et al., 2022).

Memory challenges make it difficult for some to remember their identities, partners, and who they have and choose to come ‘out of the closet’ to.

People's past and current experiences of prejudice and discrimination inhibit them from using Health and Social Care services and revealing their identities. Displays of microaggressions and non-affirmative behaviour through language, jokes, and questions are often normal which is distressing especially when care is within people’s homes.

A lack of understanding about LGBT+ cultures and experiences and the demands on people and carers living with dementia means that these occurrences can often not be reported or addressed.

This research captures the experiences of LGBT+ people and carers living with dementia and supports them to become involved in research. The research approach contributes to the assembly of rights and citizenship of LGBT+ people and carers living with dementia. After capturing their experiences, I ask whether research participants want to be part of a community of support, to present their experiences to effect change and exchange knowledge, to grow their voice, and to become Expert Researchers.

 

Project Aims

  • To capture the experiences of LGBT+ people in Health and Social Care.
  • To understand experiences of microaggressions and how these are raised and reported.
  • To engage and support research participants to present and share their experiences in multi-agency forums to grow knowledge and affect change.

Project Activity

  • Recruitment of LGBT+ people and carers living with dementia.
  • Interviews with LGBT+ people and carers living with dementia.
  • Development of support structures to work alongside LGBT+ people and carers to affect change.
  • Engagement of LGBT+ people and carers in future research and dissemination activities.

 

Anticipated or actual outputs

  • To produce examples of experiences, in formats accessible to many people.
  • To build collective support mechanisms and a local community of support for LGBT+ people and carers living with dementia in the East of England.

Who is involved? 

PI- Clare Hammerton. Post Doctoral Researcher. Institute of Health and Well-Being. University of Essex

Principal Investigator/ Lead Investigator email address

chamme@essex.ac.uk

 

AMM49