LGBTi Communities and Dementia

National project
Award: £137,500
Timescale: 2018 - 2020

Project aims

This project aims to identify the issues which are important to older lesbian, gay, bisexual and transgender (LGBTi) people in Scotland. Over two years they will develop and deliver a ground-breaking project which will work closely with LGBTi people living with dementia, and their carers. It will develop partnerships with a wide range of service providers including day care centres, home care, sheltered housing, care homes and carers’ organisations. They will also develop resources for professionals working with LGBTi people affected by dementia.

Background

LGBT Health and Wellbeing started in 2003 and is the pre-eminent organisation working with older LGBTi people in Scotland.

The needs of lesbian, gay, bisexual and transgender (LGBT) people living with dementia are poorly recognised and researched due, in part, to assumptions that all older people are heterosexual, together with persistent ageist stereotypes that older people are asexual. Older LGBT adults are however in fact significantly more likely to require support and reside in care homes as they are more likely to be single, live alone and not have children. There are a number of issues that service providers may encounter when caring for older LGBT people living with dementia, including enabling autonomy, capacity and applying the legal frameworks in ways which support the identities and relationships of these older people in care.

Service providers may not always appreciate that LGBT people may rely more on their family of choice, or their wider social network, than their family of origin, yet recognition of this informal care network is likely to be crucial. The limited knowledge and understanding of how LGBT people are affected by dementia is also due to the ‘invisibility’ of older LGBT people in dementia and carers services, as LGBT people may be unwilling to express their identity within support services and care settings.

In Scotland today LGBT people continue to face prejudice and discrimination and have poor experiences of healthcare. This means that for this group societal and healthcare attitudes are a very significant barrier to getting a timely diagnosis and appropriate support.

 

More Information

The Dementia Project will work with community members to identify the topics that LGBT people living with dementia and carers identify as important them. These may be: care services, safety, housing, end of life care, legal rights, links with LGBT communities.

The project will look at quality of life and what this means for older LGBT people, including people affected by dementia and carers, what is most important to them, what would impact on their quality of life, and how do they think services could support and promote their human rights and quality of life. This work will sit alongside the groundbreaking community consultation work currently being undertaken in England by the Alzheimer’s Society.

One of the tools that will be looked at as part of this work is the use of life story books and memory boxes and the potential these have for reminiscence, sharing stories, enabling individuals to maintain connections with key aspects of identity and supporting the development of person-centred care.

The LGBT Dementia Project will also involve partnership work with Alzheimer Scotland and other key stakeholders to develop a toolkit for professionals looking at practice in relation to working with LGBT people affected by dementia and LGBT carers. The toolkit will provide a range of information and useful resources, interactive tools, set questions, activities, examples of good practice and top tips to help groups and individuals reflect on current and future ways of working.

Ultimately this project hopes to help embed a rights-based approach and to ensure that person-centred care is a reality for LGBT people living with dementia and/or unpaid carers.

Outcomes we'd like to see

  • Increased understanding of the issues faced by LGBT people affected by dementia
  • Service providers are better equipped to meet their needs
  • Increased understanding of LGBT issues in relation to dementia, including carers
  • Increaded capacity of the dementia sector to respond to these issues