Kyra's grandparents, Aubrey and Winnifred, sat watching television together

My photography project inspired by my grandma's dementia

Kyra's grandma, Winifred, has been a huge influence on her. Kyra shares how the close bond with her grandma, as well as her experience of dementia, has shaped her life and photography work.

My grandma, Winifred Sullivan, meant a huge amount to me. When I was little, she looked after me while Dad was working, and Mum was studying. Even after I began school, I would be staying over at grandma’s once a week on average.

A special bond

Grandma had four sons. She treated me like the daughter she never had. We spent lots of time together at parks and special places.

Kyra giving her grandma, Winifred, a kiss on the cheek

Kyra with her grandma, Winifred

The first time I really noticed her dementia, I was about 14 years old, and I was staying over with her. She and I had separate beds in the spare room.

At two or three in the morning, I woke up and saw she wasn’t in her bed. I got up to see where she was, and I found her in the kitchen doing dishes. When I asked her what she was doing she said, 'Oh, I’m just doing the pots, getting ready for everyone coming over.'

I explained to her that it was the middle of the night and that she should come to bed. The next morning, I told my dad.

That was when he told me that grandma had dementia. I was young. But I understood.

Grandma was diagnosed with Alzheimer's disease in 2015.

Grandma's symptoms progressing

As time went by, grandma’s symptoms slowly became more obvious. She would go for walks on her own. She used to randomly sing songs she remembered from her childhood.

Because of the dementia, grandma would sometimes shout at members of the family. She never shouted at me though. She would say 'You’re the only one that understands'.

I could see it unfolding before me, and I would get quite upset.

My grandad, Aubrey, was amazing. He cared for her at home on his own. Everyone thinks dementia is just about forgetting. But it’s not. It’s about your personality changing – splitting in some ways.

How grandma inspired my photography

In 2017, I was at college doing photography, and my tutor told me to do something that I would find interesting.

I wanted to capture the whole range of emotions that grandma could go through.

So, in early 2018, I spent two or three days with my grandma and my grandad. I put on an exhibition of the photos afterwards.

In my exhibition, there were four photos on the left-hand side and four photos on the right-hand side. On the left, I showed four images of different sides of grandma.

One was her sticking her tongue out like a little girl – like a flashback of childhood:

Kyra's grandma, Winifred, wearing a hat and apron and sticking her tongue out towards the camera

One was her sitting at the dining table, looking really intently at something in space. She looks very lonely:

Kyra's grandma, Winifred, sitting at a dining table, with her head resting on her hand looking into space

One was her with headphones on, listening to music. She was listening to Piano Man by Billy Joel and crying:

Kyra's grandma, Winifred, sits in an armchair listening to music through headphones and crying

Finally, a photograph of grandma sipping hot chocolate, where she is looking like herself, showing happiness:

Kyra's grandma, Winifred, drinking a cup of hot chocolate

Capturing grandad's experience

On the other side of the exhibition, I had images of my grandad helping grandma.

Him putting on her apron at breakfast. Him helping her into a type of walker chair. The two of them watching television together. A shot of their hands holding each other.

And in the middle of these images is an envelope, unopened, which was sent to grandma, with a poem on the back. It was a poem which my grandma would love to read, so it stayed on the dining room table the whole time I photographed, and I heard it many times.

View more photographs from Kyra's exhibition below:

Reaching the end

Later in 2018, I had a chance to go to Australia. I was really worried for grandma, and I wasn’t sure I should go, but my dad said I should.

I came back in August 2019 and saw my grandma, and she didn’t recognise me at the start. That was devastating.

At that stage grandad had carers in twice a week to give him some time. 

But grandma was towards the end. She couldn’t walk and she could barely talk.

Grandad had cared for her at home all those years. But eventually, she had to go into hospital.

She passed away at the start of 2020. She was 84, and she had been married to my grandad for 62 years. It is amazing to think about.

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Kyra, these photos are fantastic and really capture the effect of Alzheimer's and the wonderful support given by your Grandfather. I had the privilege of knowing your Grandparents and seeing the wonderful connection they had, the Joy on Win's face when a song came on that she knew. thank you for sharing your photographs and your experience.

Ah I know Auntie Win would have loved to see this Kyra. This was lovely to read. Thank you for sharing this!

Thank you Kyra for writing about your grandma's dementia. I have it too, and my eldest daughter is being a tremendous help in keeping me happy - it is so easy to get gloomy when I'm sitting alone in my room for hour after hour. But my lovely eldest child talks to me most days by phone, text or email, and her cheeky style is a terrific boost to my morale. Thankyou my dear Georgia xxx

Kyra, your photo's with your and Alzheimer's text left me very emotional, it was superbly put together.
On a personal note, don't let those skills go to waste, words that Win would have also used.
Our local Alzheimer's where so very helpful to me and Win during those troubled times. I hope this publication will help in their long term objective in finding a cure for this horrible disease.

Thank you for other peoples contributions.

Many thanks Kyra for sharing your story and fantastic photographs with us all. You capture everything so brilliantly. Dementia is a brutal illness for both suffers and their nearest and dearest. You have captured the love and support by all and it is both beautiful and sad at the same time. With much love Mary and Andy. x

Amazing and crushing Kyra. Mum, as you know was always researching, documenting, and archiving pieces of all of our lives. She would be so pleased and impressed that you created this, love Bren.

Kyra you have truly captured your grandparents’ journey whilst suffering this with dementia. Your portraits capture poignant moments whilst dealing with the disease. This is truly beautiful and should be in my mind recognised and your story shared by the Society.

Thanks Kyra, that was amazing, so grateful that you captured everything and then, “gave me back my mum” with that look when drinking tea. I get a lump in my throat every time, xx

Thank you for sharing these memories of your beautiful Grandma and making people aware of this this disease..
Alzheimer’s is a slow process that can be so sad to watch as a loved one suffers..
I don’t know a lot about it as my Nan was diagnosed with “Old Age” back in the day .. I’m sure Alzheimer’s would be the diagnosis now..
Well done for making this and helping people become more aware of this crippling disease
that so many people suffer from mainly the old but also the young..
Well done Kyra 🙏

These photos sum up Alzheimer’s completely and have made an impact on me , such simple images but incredibly powerful . They should be an image for Alzheimer’s society.

Kyra you have succeeded in portraying a genuine image and the realities of dementia and it’s cruel destruction of the sufferer. But also the love and support of family and the way you have captured the effect on your grandma is sad and beautiful at the same as seen through your eyes. I cannot stop crying at your beautiful story.