This is a guest blog from David Ward, David is Administration Assistant for tide, based in Scotland.
Over this LGBT (Lesbian, Gay, Bisexual and Transgender) History Month at tide we have been thinking about how we can better provide a voice for LGBT people living with dementia. This blog is a first step, a “clear and explicit signal” that tide is here to listen to the concerns of the LGBT community and work towards making our network a safe space for LGBT people to participate in achieving the tide mission. We have a responsibility to show that we understand the specific issues faced by the LGBT community and incorporate that into our work so that LGBT people are able to take part in tide projects on an equal footing. LGBT carers are one of our thematic focus areas for 2018. As always we are guided by our membership, so if you are LGBT and care for someone with dementia please join us and let’s work together!
The ageing LGBT community has a distinct set of needs and issues. Many of the oldest community members lived through a time when they could be imprisoned for their sexuality and where “conversion therapies” were considered viable by the medical establishment. Many of those who survived the trauma of the AIDS crisis did not consider reaching old age as a realistic option and we are just now seeing the first transgender people who have received hormone treatments reaching old age: there are many unknowns. Older LGBT people are far more likely to be single than heterosexual people; it is vital that LGBT concerns are accommodated in into current conversations about loneliness.
Widespread assumptions within the dementia community about family relations, children and romantic relationships can result in LGBT carers being alienated from the start (DEEP Over the Rainbow Report p.13). Accessing healthcare in the first place is especially anxious for LGBT people and LGBT carers who are given access to support are likely to not fully engage if there is too much of a focus on the experience of heterosexual carers.
“Many carer support services are developed under heteronormative assumptions, which means that these services being less relevant for LGBT carers. The lack of appropriate carer support further contributes to stress of carers who may already be experiencing financial, physical and emotional pressures.” (Dementia, Transgender and Intersex people, Dementia Australia)
Being ‘out’ to the health services that you need is vital to being honest about your health, but Stonewall’s 2012 research showed that half of Lesbian and Bisexual Women and a third of Gay and Bisexual Men are not ‘out’ to their GP.
The picture gets murkier still when we consider people going in to care: one study showed that a third of people would go back in the closet if they went into care. In their excellent “We are still gay” research paper, Dementia Australia spoke to Nick who cares for his partner George:
“The dementia programs are very heterosexual focused, very elderly focused. Accepting in-home care is going to be rather interesting because … are they going to have a problem with us being gay? … We’d like to have someone who is acceptable and frank. We don’t want to have to pussyfoot around and not be our natural selves.”
No-one should have to hide who they are in order to access the most basic of services. It is time for organisations like us to use the resources we have to change attitudes and create spaces where this is feels like a safe and realistic option for LGBT carers.
Family: Origin and Chosen
LGBT people often have a ‘family of choice’ who do all the things you would expect of a family. One study showed that 59% of LGBT people would identify friends as their first port of call; just 9% chose their origin family. People in the LGBT community have built unique structures of support for themselves due to familial and medical discrimination; these structures have to be acknowledged and respected.
At tide we want everyone’s life story to be listened to and acted upon, with the understanding that we actually have to respond to individual life stories:
“this may mean moving away from liberal assumptions based on the core similarities between people and increasing awareness about the particular challenges that LGBT people with dementia may face or experience.” (DEEP Over the Rainbow paper)
Families of choice are just that: families. Often they are filling the void left by discrimination and abuse from someone’s origin family, providing a support network that is intrinsically understanding of the complex issues facing LGBT people.
tide advocates for a rights-based approach both for the carer and for the person with dementia. However, the UN Convention on Human Rights was written in a time before LGBT people won equal legal recognition. Looking at Article 16.3 – “The family is the natural and fundamental group unit of society and is entitled to protection by society and the State.”
It is easy to see how this could be manipulated by an ‘origin family’ to exclude an LGBT person’s family of choice. At tide we would push to ensure that the family of choice is respected and the carer and person with dementia are listened to: if someone tells you someone is family then believe them.
LGBT people are more likely than the general population to be carers. This happens for a number of the reasons detailed above: they might not be ‘out’ to their family so they’re seen as single; if they are out, the family might not see any romantic relationships as legitimate or assume they have more time to care; their ‘family of choice’ is not recognised by their origin family.
“a third of 350 participants reported that their families had greater expectations of their care-giving responsibilities due to their LGBT status and the assumption that they had fewer other family responsibilities” (Dementia, Transgender and Intersex people, Dementia Australia)
At tide we strive to ensure that ‘… and their carers’ is no longer acceptable to simply add on to any resource, strategy or event aimed at people with dementia with no more than tokenistic consultation with carers. We also want to apply this principle to working with LGBT people, ensuring that the concerns of the community are taken into account before during and after any tide event.
We are constantly responsive to issues raised by our members. If you are an LGBT person who cares for someone with dementia please get in touch and we can work together in telling your story and ensuring that LGBT carers for people with dementia are listened to.