A project has been launched in collaboration with the Alzheimer Society of Ireland to address the gap in services for older LGBTQ+ people with dementia. It is being led by Dr Sinéad Hynes, an occupational therapist and lecturer at NUIG, and is funded by the Irish Research Council.
The lack of dementia services in Ireland for LGBTQ+ people was highlighted by Daithí Cee. He was diagnosed with early-onset Alzheimer’s five years ago and he is also battling cancer. He found that accessing the necessary services as a gay man has not always been easy or comfortable. He joined the Alzheimer Society of Ireland’s public advisory panel where he advocated for better care for LGBTQ+ people.
“I’m determined that as I approach my end of life with this progressive disease that diminishes cognitive capacity, I want my care to be every bit as queer-centric as my life has been,” he told GCN. “I don’t want heteronormative care imposed on me. And I’m not the only one who feels that way.”
“We’re going to do focus groups, we’re conducting a national survey and things like that to identify what those needs are in an Irish context,” Dr Hynes explained to GCN. “There’s some really nice examples in the UK or the US, but they might not be suitable to the Irish context. There’s cultural differences, the people’s history is different.”
Some LGBTQ+ people feel reluctant to access dementia and other health services. They are worried about having to disclose their sexual orientation or gender identity, or having to go back ‘in the closet’. They are also concerned about stigma and discrimination, or that their identity and needs will not be properly understood. They fear that they will become isolated from the things that are important to them, and they worry about being lonely because their experiences are different to other people’s.
Daithí experienced many of these feelings when accessing health services in Ireland. He also found that some healthcare workers assume that treating people equally means you want to be treated ‘the same as everyone else’. He says that they did not seem to understand that his sexual orientation is an important part of who he is and he wants that to be recognised.
Originally from Chicago, Daithí moved to Ireland two years ago after feeling ‘under attack’ from Donald Trump’s administration. He became a citizen through his Irish grandmother and settled down in Youghal, Co Cork.
However, while he feels at home in Ireland, he has found aspects of the transition challenging. The local council helped set him up with a two-bedroom flat but he is in a wheelchair and struggled with living alone due to his cancer and dementia diagnoses. Yet he shares that he got no further help from them and would go months without hearing from the public health nurse.
Research shows that healthcare policies and services may have a heteronormative bias. This can be seen in the case of homecare in Ireland, where 90% of carers for older adults are informal or unpaid carers, 70% of whom are women (most commonly a female spouse). This reliance on female‐led, familial homecare is based on a heteronormative family ideal. This creates a system that may not readily accommodate the needs of LGBTQ+ older adults who may not have this kind of familial support available.
Daithí has no living family in Ireland and it was only through his LGBTQ+ networks that he was able to find someone who could help him out at home. He was put in touch with a transgender young woman who needed a place to stay after experiencing family difficulties, and the two moved in together.
“She’s my flatmate. Now we are intergenerational, helping each other when the housing and the healthcare system failed to do so. That’s what rainbow families do for each other.”
He hopes that this new research by the Alzheimer Society of Ireland can be the first step to fixing these problems so that LGBTQ+ people in the future do not have to face the difficulties he has encountered.
For Daithí it is simply about being seen and respected for his identity when engaging with health services. “I’d like to spend the end of my life playing some drag queen bingo, and there’s nothing wrong with that. I want it in a queer context, aging in a queer context.”
If you are an older LGBTQ+ person or a carer for one, who would like to contribute to the Alzheimer Society of Ireland’s research, you can contact Dr Sinéad Hynes directly at [email protected].
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