Exploring the experiences of LGT Australians living with dementia Sally Lambourne Senior Project Manager AlzNSW Pauline Crameri Vals Café Coordinator ARCSHS La Trobe University 5 November 2016 ID: 584542
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“We are still gay…”
Exploring the experiences of LGT Australians living with dementia
Sally Lambourne
, Senior Project Manager AlzNSWPauline CrameriVal’s Café Co-ordinator, ARCSHS, La Trobe University5 November 2016Dementia Today: Diverse Communities, Collective ActionAlzheimers NZ Biennial Conference and 19th Asia Pacific Regional Conference of Alzheimer’s Disease InternationalSlide2
VAL’S CAFÉ
Improving the health, well-being and visibility of older LGBTI AustraliansSlide3
THE RESEARCH PARTNERSHIP:
Understanding & meeting the needs of LGT Australians living with dementiaSlide4
No data on
number of LGBTI people with dementia No data on the number of people who are carersSilence
surrounding the sexuality of people with dementia Invisibility of LGBTI elders Societies implicit presumptions of heterosexuality and a gender binary
DEMENTIA PREVALENCESlide5
When you meet one person with dementia
...
you’ve met one person with dementia.Slide6
WHY
: Lack of research and visibility
AIM: Improve aged care services
HOW: Document the experiencesAPPROACH: Exploratory
OUTCOME: Resource
THE
RESEARCH:
Understanding
& meeting the needs of
LGT
Australians living with dementiaSlide7
Two 2014-2015 studies
LGBTI Dementia Project
Trans Ageing and Aged Care Project
36 in-depth interviews with LGT peopleParticipants aged between 47-79
3 living in RACF
METHODOLOGY
:
Understanding
& meeting the needs of
LGBT
Australians living with dementiaSlide8
HISTORYSlide9
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-traumatisingSlide10
SEXUAL ORIENTATION AND TRANSGENDER IDENTITY
‘We’ve got a new resident here who use to be gay’Slide11
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 68Slide12
Service
providers
must recognise the sexual diversity of people living with dementia.
Gender identity needs to be recognised as afundamental human right and support provided to enable people living with dementia to maintain their preferred gender identity.Slide13
DISCRIMINATION
No I’m not discriminated against – I am fine!Slide14
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.Slide15
MANAGING DISCLOSURE
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
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
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. Slide16
MANAGING DISCLOSURESlide17
Service providers who are aware of the fear of
inadvertent disclosure can alleviate anxiety bycommunicating that they are LGBT inclusive.Slide18
Provide a protective space against discrimination
A place where diversity is affirmedProvide a vital advocacy role
Enormous unrecognised grief associated with the death of their partner
INTIMATE PARTNER RELATIONSHIPSSlide19
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. Slide20
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.Slide21
Families may
not respect their wishes, and may not recognise their intimate partnerFamily interventions can adversely affect trans people’s ability to live in their self-ascribed gender
FAMILIES OF ORIGINSlide22
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. Slide23
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 partnerSlide24
SOCIAL CONNECTIONSlide25
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.” Slide26
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.Slide27
THE RESOURCE and the GUIDESlide28Slide29
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
THANK YOU
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