I was diagnosed with dementia at 31 years old.
I am currently the youngest person in the UK
with my form of dementia, which is frontal lobe atrophy.
I am originally from Barbados,
not many people have known about it,
a small little Caribbean island.
I was born there in 1983.
I took a lot of abuse, a lot of abuse as a kid.
It wasn't easy, but, my upbringing with my family
was wonderful - I couldn't have asked for a better
environment to be in.
I never identified as a boy.
I hated being a boy as a child.
I felt like completely I was in the wrong sex as a child,
because I was just all woman.
I was diagnosed with dementia at 31 years old.
I am currently the youngest person in the UK
with my form of dementia, which is frontal lobe atrophy.
When I found out I had the condition,
yeah, I kind of fell apart.
I've outlived my expectancy.
And I'm considered a walking miracle to them,
because a recent study came out a couple of years ago
stating that the human brain can develop new neurons
in order to cope, so instead of taking A to B,
I would take A, D, C to get to B and I did.
I had to learn how to walk, talk and write again.
And the diagnosis was hard at 31.
I had no memory of what my partner did.
I had no memory of my family, of my mum and dad, yes,
but I still introduced myself to my cousins
as if I met them for the first time.
You have to take extra precautions
and that's how I've managed to survive and function
and I look fine for myself,
but behind closed doors it's another matter.
The work that I have done is what really,
really gave me a purpose.
I don't mind going through hell
and I'm spiritual, I still go to church and do my prayers,
but I felt like it's not in vain
to going through so much hell if I'm still out there
trying to do something to help somebody else.
There was no services for me - nothing.
Yeah, I think also the loneliest part of it,
because, you know in your mind that you've gotten a bit better,
but there's going to get a point
where it will just get worse
and it gets worse every single year.
And I don't know what my future is going to be like
with my condition at home.
Covid and the pandemic really had an impact on my mental state,
which I didn't realise.
So, in one in four people with dementia died.
And we saw many cases where people
who did not receive any human touch
or their family around them
aged right before their eyes.
And I started realising I was getting the same thing.
Every year I see my parents, I get a hug from my family.
I'm a bit more anchored.
I see my best friend.
When we go away, I feel hugged and loved.
And even though I have friends, it's not the same,
not that kind of love feeling.
I separated from my partner in February,
everything collapsed - my support worker,
the LGBT foundation lost its building,
I couldn't see my mum and dad,
I couldn't see my best friend.
and it felt like everything was purposely
stripped away from me.
The first time I got a hug in almost 11 months
was when my best friend came out,
when I came out of quarantine and he gave me a hug.
And I literally felt loved.
And having my friends around me in Barbados take care of me
and my aunt brought me coconut water when I was ill.
All those little things was like, "Oh my God,
I actually feel supported."
In a way that I have not felt supported in a long time.
And yeah, the pandemic made me realise a lot,
but also made me realise how fragile support is.
And how friendship and family is, should be honoured.
I realised that there were so many other people
who could be in my situation that gets no support.
And the only way I can develop support for myself
was trying to build something for somebody else.
And use my heartache and hope my pain
to integrate that into an organisation
that we're trying to develop something different.
We're trying to help other people,
but that's literally because
I need that support for myself when it's set up.
Like I'm trying to help with care homes
in Manchester for LGBT people, because I might need one.
So I'm smart in that area, I'm not stupid.
I will try to develop something, but it's literally for me.
I'm trying to develop something for myself.
And if it's a pathway for other people, then wonderful.
That means no one has to go through what I went through.
The Bring Dementia Out project started in 2017
as an idea with the Alzheimer's Society.
I originally set up the first LGBT Dementia Network
which was a voluntary thing
with a lot of amazing individuals.
But as a volunteer thing, people can't always turn up.
But it was the first in the world.
I even had LA call me to find out
about how to do the project.
And then the Alzheimer's Society brought up
the Bring Dementia Out project - for two years it was innovation.
We interviewed people from all walks of life.
I did a dementia video with them.
It was wonderful, but after two years of project,
it's finished, because you need funding for it.
And I actually met a lady from Guinness Housing Trust,
who I lived with and I pitched it to her.
I said to her, "Wouldn't it be amazing
that you have a building who has a lot of LGBT people there?
That means someone else in here has dementia besides myself.
Wouldn't it be great if your organisation,
housing association had support for people
living in their homes with early onset,
that they feel like they can feel cared for?"
And she went, "Yeah." I got my funding.
And from there the Bring Dementia Out
project now actually gives training.
We train housing associations, Age UK, Thameside,
and Guinness Housing Trust.
And we're moving on to the other housing associations.
We train them on LGBT issues
as well as - aI'm a lived experience advisor,
so I bring it home by mentioning stories I've been through.
And it's just to open the minds of people,
that there are people from our communities
who are living within an establishment
might need extra bit of care or support,
because our walks of life
are completely different to the heterosexual norm.
And we just train them in that.
The whole thing is we don't know much
about how LGBT people behave within the care home settings
and what they go through, because no one's out.
I use Grindr, believe it or not. I have my work on there.
And it was just a simple thing as someone said to me,
"I'm 51 years old, I never thought about dementia.
I never even thought that if I developed dementia
where I would go for my support."
But he was so proud to see someone from my community
go out there and try to do something.
Even when the CEO was, he never thought about it,
but we don't think about it until it happens.
But when it does, where will you go?
We're just trying to train people on the possibilities
or open their minds towards how other
or how other communities behave.
I have to thank Julia Collins from the Alzheimer's Society.
She was my support worker for many years.
Oh, I'm going to cry.
She helped saved my life about two, three times.
I have to thank Andrew Gulliver from the foundation,
Simon Baker and Charlotte Cook.
They really made it worth living.
And Andrew was my boss many times before.
And he really honed in what skill and talent I had
and gave me a direction and said to me,
"You have a good platform with your HIV,
but you can really develop a new platform
in order to help other people.
So don't feel scared or alone,
just do that and you'll find comfort."
Yeah, I need to thank them.
So I was able to start lecturing at universities
as a lived experience advisor.
First, I would lecture about HIV.
As a result I would lecture about substance abuse,
because I've been through that
and then dementia.
The reason why I did well was because
there was no one my age group who was able to express
what it feels like to have dementia.
You know, most people who,
the English culture is not about expression.
I'm not English, we talk.
In the Caribbean we blab everything.
So I had no problem telling you
what was going through my mind.
And I spend a lot of time in my mind
trying to figure out what,
"Is this the reason why I do this, and is that the reason?"
And it comes through within my work.
I feel sorry that there's people out there
who still don't have the strength to fight for a diagnosis
or too afraid to go to the hospital
and tell their doctor that
there's something wrong with their memory.
And I'm upset, no doubt, a trans woman is too scared
to think of her future if
she goes into a care home, and I feel like
it's my responsibility, because I have the fight,
I have the face and I have the words still to do it for them.
It means a lot to know that someone thought of me
that I'm not a small person just from Manchester
or from Barbados.
I'm actually someone who was recognised for something.
It means that my work will get a bit more publicity.
And it means I've grown up a bit more.
You spend seven years of your life
trying to recover from a breakdown and a condition.
And, you know, you spend those seven years fighting
to do stuff you really haven't had time to heal.
And I feel like, "Oh my God, I've healed enough
that my work has gotten me another recognition."