Real stories

The impact of decades of homophobia on a person’s experience of dementia

It is 20 years since Neil Cutler asked his late partner, John, to see their GP about his memory problems. Dementia was the last thing on his mind.

‘In those days, we put it down to old age,’ says Neil. ‘I thought well, he’s nine years older than me – it’s probably just one of those things.’

Neil had taken early retirement when they moved to North Yorkshire in 2002, and John’s symptoms were too gradual to notice at first.

Once you start to live with somebody 24/7, you don’t notice the changes so much as if you were out to work all day.

Very adept at hiding dementia

Years of discrimination and abuse for being gay meant John had also learned how to hide things.

‘He was very adept at covering up our relationship. As dementia started to set in, he was still using those techniques.

‘We really struggled. He got very aggressive at times. He could be really nasty, very verbally abusive.’

We just kept going, but then it got to a stage where his memory was really bad.

As John’s dementia progressed, things only got worse.

‘The last 10 years of his life were awful, and the last three were extremely awful.’

Experiences of homophobia cast a long shadow

It’s usual for people’s earlier lives to colour how dementia affects them. John’s experiences of homophobia cast a long shadow.

He was already in his 30s in 1967, when being gay began to be decriminalised in parts of the UK.

He’d spent the vast proportion of his younger years realising and coming to terms with his homosexuality.

‘It clouds people’s judgement when dementia sets in, because it puts them back to those scary times.

‘We didn’t get together until 1974. Being openly gay was really frowned upon. You suffered abuse, sometimes gay bashing. When we were out and about, he’d say, “We share a house, but we’re cousins."'

Despite continued stigmatisation of gay people through the 80s, Neil says he and John shared some wonderful times together.

Dementia care still tainted by prejudice

But decades later, their experiences of dementia care were still tainted by homophobia.

‘I didn’t realise until recently, being gay was still classed as a mental illness by the World Health Organization up until 1990.’

Plenty still needs to be done to address prejudice against gay and other LGBTQ+ people in the UK. For all the progress made here, the situation is much worse in many other places.

This affects the experiences and attitudes of people from around the world, including health and social care professionals.

Neil recalls a particular mental health unit nurse who treated John very badly.

You’d like to speak up, but you just think, how’s he going to be treated when I’m not here?

After John moved into a care home, Neil remembers another resident’s wife who never spoke to him again after learning they were a couple.

Improving support 

Thankfully, Neil did find some invaluable help – especially from Dementia Forward, a charity covering York and North Yorkshire.

This left Neil determined to improve support for other people affected by dementia too.

After John died in 2015, Neil became a trustee of Dementia Forward and joined York LGBT Forum. He delivers LGBT awareness training to care staff and shares his experiences with healthcare students.

It all helps him to find meaning in everything he’s been through.

‘Hindsight’s a wonderful thing, isn’t it?’ says Neil.

‘You can look back and think, “Yes well, this most probably all fell into place for some very good reason.”’