Dec 12, 2017

The Dementia Diagnosis and Poor Health Outcomes for Diverse Elderly

People who identify as lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) are collectively grouped as a single community yet their only commonality is sexual identity that varies from the perceived norm.

Historically, many within this community have suffered persecution and leading to reluctance to access healthcare services.

Perceived stigma associated with a diagnosis of dementia escalates this fear, leading to later diagnosis and generally poorer health outcomes.

Within western societies, the choice to make independent decisions about sexuality is considered a fundamental human right, yet it was not until 1997 that mutually consensual male homosexual acts were decriminalised in Australia.

Homosexuality was classified as a mental illness until 1973, while transgender people continue to be classified as disordered in psychiatric manuals.

This long discriminatory history has led many LGBTIQ people to feel unsafe in the revelation of their sexual orientation within health.

Despite recognition of same sex partners as equal rights de-facto spouses within Australia, members of the community do not uniformly recognise LGBTIQ people and nurses may lack knowledge or understanding of these rights.

The history of unequitable rights for LGBTIQ people intensifies the need for advanced planning of legal arrangements, to remove ambiguity surrounding substitute decision makers. As these arrangements need to be confirmed while the individual maintains legal capacity, early diagnosis of dementia may lead to significantly improved outcomes for individuals as the disease progresses.

Age increases the need to access and rely on support services and a diagnosis of dementia further increases this.

For LGBTIQ people the need to rely on nd support services will be unsettling as they confront past discriminatory experiences alongside the stigma associated with dementia.

Anticipation of loss of connection with their community of choice and resultant loneliness negatively affects quality of life and impacts the decision to access services. For those who do n access services, there is a very real concern that their sexual identity will be lost if they enter residential aged care facilities (RACFs).

Many RACFs provide an environment that is not conducive to sexual expression and lacks awareness of the needs of older LGBTIQ people. There is a history of sociocultural stereotyping and asexualisation within RACFs with all individuals being treated the same.

For LGBTIQ people, loss of connection to like-minded people, an inherent desire for sexual privacy and diminished cognitive capacity will lead to reduced freedom of expression and ultimate loss of identity.

In 2012, the Australian government released the National LGBTIQ Ageing and Aged Care Strategy (DOHA, 2012) that identified five key principles of inclusion, empowerment, access and equity, quality and capacity building, in the provision of person-centred care.

Additionally, in 2013 amendments to the Sex Discrimination Act 1984 prohibit discrimination based on issues of sexuality. These legislative initiatives acknowledge the previous discrimination and persecution of LGBTIQ people and set goals for LGBTIQ inclusive RACFs and equity of access to healthcare for all (DOHA 2012).

RACFs require LGBTIQ inclusive action plans that address staff knowledge and policy deficits in both dementia-care and understanding that human sexuality and gender identity continue across the lifespan.

Acknowledgement is required by aged care service providers that the experiences of LGBTIQ people living with dementia is different to heteronormative life experiences ensuring that dementia is not a barrier to expression of sexuality.

Participation of LGBTIQ individuals with dementia is central in creating policy and practices that are inclusive and support integrated participation recognising the uniqueness of every individual.

People with dementia often enter into RACFs as the disease progresses and there is an acknowledged need for provision of LGBTIQ inclusive services.

Staff education, policy change and participation by people from the LGBTIQ community with an understanding of dementia will be critical in addressing inequities and providing personalised services that recognise an individual’s sexuality regardless of the presence of dementia.

This content was originally published in ANMJ Volune 25, No. 5, November 2017. 

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