It is Patrick Ettenes' fourth time visiting Malta, but this time he is not here on holiday.
Eight years ago, at just 31, Ettenes was diagnosed with frontal lobe atrophy, a form of dementia. He recalls being told that his early onset of dementia was a “punishment from God”, because he is gay.
“I remember thinking, no this is not a punishment, but a blessing and a chance for me to give back to my community – to find a way to support those LGBTIQ people who are also experiencing dementia,” Ettenes told Times of Malta.
On Monday (today), he will be participating in a talk on the subject at Casa Arkati, Mosta, in collaboration with CareMalta and the Malta Dementia Society. The talk is one of the numerous events taking place during Malta Pride Week, which kicked off last Friday.
Ettenes said the first signs of his early onset of dementia surfaced when he came out of an abusive relationship.
“I had a nervous breakdown, which left me having to learn how to walk, talk and function again. By that time I had been living with HIV for over 10 years and had recovered from substance abuse," he said, adding that his father had also suffered from dementia.
His dementia is still at an early stage but there are moments when he would “blink” and not remember where he is.
Born in Barbados and based in Manchester, Ettenes was one of the youngest people in the UK to be diagnosed with early-onset dementia.
He began to attend dementia support groups but would leave feeling more depressed.
Being gay added another layer of the struggles I faced with my diagnosis
“I would be in a room of 50- and 60-year-olds with their wives or husbands, who take care of them. I sat there thinking I had no one to take care of me and I had nothing in common with these people,” he said.
'It can be lonely'
“Being gay added another layer of the struggles I faced with my diagnosis. I am proud of who I am an that I am part of the LGBTIQ community, but what many of us don’t see is how lonely it can also be. As vibrant and beautiful the community is, there is also a lot of hurt.”
So Ettenes set up the volunteer-led LGBT Dementia Network, and also co-founded Bring Dementia Out in collaboration with the UK Alzheimer’s Society, to improve services to LGBTIQ people in the care system.
“In England, a trans woman who went into a care home was ‘re-transitioned’ as a male because of her family. This person was so hurt... we can’t let this happen again.”
He added it is important for a person to have a support group, surrounded by people who identified with the same community.
'They are there but are hidden or scared'
Ettenes' concerns were echoed by Christian Vella, a PHD candidate researching how to improve long-term care for LGBTIQ people.
“We know there are around 5,000 people in the LGBTIQ community aged over 65, but we do not know how many of them are in a care home or how many have dementia,” he said.
“They are there but are hidden or else scared to be open about it.”
Christian VellaPraising the work of local care homes and dementia care, he said small but meaningful incentives can ensure that everyone, regardless of sex, gender, or race, felt safe.
Hanging a rainbow flag in the establishment was one way to do so.
“When one looks up elderly homes, they always see pictures of older heterosexual couples, or posters of straight, white individuals. We can change this by including pictures of two women or two men, showing that all are accepted.”
He said it was important to provide the necessary training to push for more awareness, especially among people who might have faced trauma or difficulties to come out.
“Never assume. Always ask a person to tell you what their preferred pronoun is. Additionally, also ask them whether they have a partner, or to indicate the person they trust, as they might not be close to their relatives.”
The event that Ettenes will be addressing is free, but registration is required. More information on www.maltapride.org