“We are still gay…” Exploring the experiences of LGT Australians living with dementia Sally Lambourne, Senior Project Manager AlzNSW Pauline Crameri Val’s Café Co-ordinator, ARCSHS, La Trobe University 5 November 2016 Dementia Today: Diverse Communities, Collective Action Alzheimers NZ Biennial Conference and 19th Asia Pacific Regional Conference of Alzheimer’s Disease International

VAL’S CAFÉ Improving the health, well-being and visibility of older LGBTI Australians

THE RESEARCH PARTNERSHIP: Understanding & meeting the needs of LGT Australians living with dementia

DEMENTIA PREVALENCE No data on number of LGBTI people with dementia No data on the number of people who are carers Silence surrounding the sexuality of people with dementia Invisibility of LGBTI elders Societies implicit presumptions of heterosexuality and a gender binary

When you meet one person with dementia... you’ve met one person with dementia.

THE RESEARCH: Understanding & meeting the needs of LGT Australians living with dementia WHY: Lack of research and visibility AIM: Improve aged care services HOW: Document the experiences APPROACH: Exploratory OUTCOME: Resource

METHODOLOGY: Understanding & meeting the needs of LGBT Australians living with dementia Two 2014-2015 studies LGBTI Dementia Project Trans Ageing and Aged Care Project 36 in-depth interviews with LGT people Participants aged between 47-79 3 living in RACF

HISTORY

Understanding history can enable service providers to better understand what LGBT clients may bring to their encounter with services. It is important to be mindful of historical experiences of discrimination when undertaking assessment or developing life stories. Questions about experiences growing up, family and early relationships may precipitate anxiety or be re-traumatising

SEXUAL ORIENTATION AND TRANSGENDER IDENTITY ‘We’ve got a new resident here who use to be gay’

SEXUAL ORIENTATION AND TRANSGENDER IDENTITY If I could not find a place that would allow me to be a woman I would suicide, without hesitation, because I will never go back to that pretence, to that vigilance, to that exhaustion of trying to keep everybody happy by pretending to be something that I am not . Caren 68  

Service providers must recognise the sexual diversity of people living with dementia. Gender identity needs to be recognised as a fundamental human right and support provided to enable people living with dementia to maintain their preferred gender identity.

No I’m not discriminated against – I am fine! DISCRIMINATION No I’m not discriminated against – I am fine!

Dementia services need to send the message to LGBTI clients that they are valued and safe Service providers could significantly address the fears of LGBT people living with dementia by demonstrating their commitment to providing LGBT inclusive services.

MANAGING DISCLOSURE I think we have been lucky because we're not outrageously gay , if you know what I mean? We're not really outrageous and not very camp in our actions and things like that. There's a lot of people out there that are and they are the ones that are going to find a lot of discrimination Greg and I have been together for nearly 40 years. I'm 75. We have never been the type to flaunt our sexuality. If anybody asks, yes, they're told Where as if Tim was a bit more camp or something like that, you know, someone would probably say "Are you one of those poofters" or something like that. 

MANAGING DISCLOSURE

Service providers who are aware of the fear of inadvertent disclosure can alleviate anxiety by communicating that they are LGBT inclusive.

INTIMATE PARTNER RELATIONSHIPS Provide a protective space against discrimination A place where diversity is affirmed Provide a vital advocacy role Enormous unrecognised grief associated with the death of their partner

INTIMATE PARTNER RELATIONSHIPS My long-term partner’s care needs were almost impossible for me to manage at home. My partner died before it was impossible. It got very close though. Some of the care providers assumed Lilian was my mother. They would say “Oh is your mother sick is she”, or “your mother’s got dementia”. And I’d say it’s not my mother , she’s my partner.

Service providers who demonstrate LGBT inclusive practice will communicate to LGBT people living with dementia and their intimate partners, that they are aware of the importance of providing a safe spaces for full disclosure of needs. Facilitators of carer support services need to take into account the diversity of carer sexual orientation and gender identity to ensure groups are accessible to all carers.

FAMILIES OF ORIGIN Families may not respect their wishes, and may not recognise their intimate partner Family interventions can adversely affect trans people’s ability to live in their self-ascribed gender

FAMILIES OF ORIGIN My partner’s children turned their backs on their mother, but when she was diagnosed with dementia they did not want me to be in control of decisions. They ended up taking me to the Guardianship Tribunal accusing me of maltreating her because they wanted control. They wanted her put in a nursing home and I was asking for access to her money to fix up things at home so that she’d be safe. … the fact is they didn’t give a fig but they’re all standing in line now waiting for the will to be read. I applied for legal power to make financial and medical decisions on behalf of my 74 year old partner Rick, who had dementia. The application was challenged by Rick’s 80 year old cousin, who was conservative, small minded, and very religious. She wrote a letter to the organisation reviewing the application. She made reference to our homosexuality and added that she was only grateful that her children are of an appropriate sexual orientation.

Service providers who understand the historical tensions that occur with some families of origin and the legal rights of LGBT people are well placed to recognise the emotional difficulty of such conflicts and advocate for the rights of the LGBT person living with dementia – particularly those who don’t have an intimate partner

SOCIAL CONNECTION

SOCIAL CONNECTION …have quite a few lesbian neighbours…we look after them and they look after us…I think it’s important because, again, you can freely be yourself. Like me saying we don’t flaunt our sexuality…but when you are mixing with your own type, if you like, you speak freer. “it would be really nice to get some real gay friends as well in the same sort of situation…somebody that you can really discuss things with and see how you are going.”

There is a need to educate LGBT communities on the importance of reaching out to support community members living with dementia, particularly those without an intimate partner. There is also an opportunity to inform LGBT people living with dementia about LGBTI specific community visitors schemes (where these exist) and the important support they can provide.

THE RESOURCE and the GUIDE

THANK YOU Sally Lambourne Manager, Policy, Research and Consultancy Alzheimer's Australia (NSW) E: Sally.Lambourne@alzheimers.org.au T: 61 2 8875 4633 www.fightdementia.org.au Pauline Crameri Co-ordinator – Val’s Café, GLHV Australian Research Centre in Sex, Health and Society, La Trobe University E: p.crameri@latrobe.edu.au T: 61 3 9479 8740 www.valscafe.org.au