Living with dementia

I was first diagnosed when I was 57 and it took five years to get my diagnosis.

It was a long, drawn-out process back then, but I hope today that with people like Ian and I and our advocacy work that we have changed that.

Tell me a bit about your daily life right now.

What is your routine?

I live at home with my dog, Lexi, because my husband passed away in lockdown.

And so my routine is getting up in the morning, opening my patio door, listening to the birds sing.

And they remind me I have to feed them.

And then the dog gets me out of bed.

He has his nose over the side of the bed looking for it to get up first.

So that's the beginning of the day.

I have my diary telling me what's happening in the day.

And it's about having sticky notes all over the house, having a whiteboard.

having information technology, having all kinds of things that will help me to live my daily life.

And one of the days that my daycare comes, that's great.

She comes three days a week.

And it's great to get out because it's really good for myself and for my well-being as

well.

Of course.

Ian, can you tell me about when you were diagnosed, please?

Similar to Helen.

I would say if you're talking about dementia, you don't really diagnose dementia.

You diagnose some sort of illness, which is sort of included in an umbrella term.

And my condition is basically a rare form of Alzheimer's, which affects the back of my brain, which is basically disintegrating.

And that affects my vision and my coordination.

So my typical day, actually, I'm relatively self-sufficient.

I was first diagnosed when I was 57 and it took five years to get my diagnosis.

It was a long, drawn-out process back then, but I hope today that with people like Ian and I and our advocacy work that we have changed that.

Tell me a bit about your daily life right now.

What is your routine?

I live at home with my dog, Lexi, because my husband passed away in lockdown.

And so my routine is getting up in the morning, opening my patio door, listening to the birds sing.

And they remind me I have to feed them.

And then the dog gets me out of bed.

He has his nose over the side of the bed looking for it to get up first.

So that's the beginning of the day.

I have my diary telling me what's happening in the day.

And it's about having sticky notes all over the house, having a whiteboard.

having information technology, having all kinds of things that will help me to live my daily life.

And one of the days that my daycare comes, that's great.

She comes three days a week.

And it's great to get out because it's really good for myself and for my well-being as

well.

Of course.

Ian, can you tell me about when you were diagnosed, please?

Similar to Helen.

I would say if you're talking about dementia, you don't really diagnose dementia.

You diagnose some sort of illness, which is sort of included in an umbrella term.

And my condition is basically a rare form of Alzheimer's, which affects the back of my brain, which is basically disintegrating.

And that affects my vision and my coordination.

So my typical day, actually, I'm relatively self-sufficient.