Actor Kate Dickie’s connection to dementia was a big reason why she took part in Alzheimer’s Society’s hard-hitting Cure The Care System film. Kate shares an important message for other people affected by dementia.
This Dementia Action Week, Alzheimer’s Society is calling on the Government to cure the care system now. To help get this important message across, our new film has been launched to show the impact of caring for a person with dementia.
Featuring Kate Dickie playing the character Anna, the film highlights some of the day-to-day challenges a primary carer of a person with dementia has to face.
Kate has been in many major films, stage plays and television programmes, including Game of Thrones, Tinsel Town, Red Road and Prometheus.
Kate kindly spoke with us about why she was eager to take part in the Cure The Care System film, and has a message for other people affected by dementia.
Watch the two-minute film, and read Kate’s personal story – continued below.
Kate Dickie's dementia story
Taking part in the Cure The Care System film
‘When this came up as a casting opportunity, my heart leapt. I really wanted to do it as I had first-hand experience of how difficult dementia can be. I understood the circumstances of the carer, the pain, and the grief. I wanted to do it as an ode to my mum and dad, who had been in a similar situation.
‘Ahead of filming, I began to feel a little apprehensive. It started to bring back memories I’d put away for a long time. But on the day, we were making the best film we could for Alzheimer’s Society. I didn’t feel like I was carrying in too much grief for my mum.
‘My focus was portraying Anna and the situation with her husband, Peter. Everyone on the film shoot was really committed to it, which was lovely to see. Mark, who portrayed Peter, was amazing. He brought so much empathy and understanding with nuances of behaviour and physicality.’
‘It was an emotional day, but also so uplifting.’
‘I did have a big cry when I got home. But the filming wasn’t a jagged experience, as I had feared. It was really heart-warming.’
Keeping Mum in mind
‘I was asked to bring some photos of me to include within the film. I also brought along a framed black-and-white picture of my mum from the 1950s. I really wanted her to be there on set with me. I was pleased that her picture was placed on the dresser in the bedroom of the house. I was doing it for her.
‘Mum had been diagnosed with Alzheimer’s disease in her early-50s, and passed away at 55 in 1994. My dad, my siblings and I suspected something was wrong a number of years before.
‘It was little things at first. When she was around 47, we noticed Mum would replace words by mistake and say, “Dinner’s in the onion!” instead of the oven. Mum began to get more flustered and mixing other things up.
‘The doctor, who took into account Mum’s age, attributed the symptoms with menopause.’
‘At that time, dementia in younger people wasn’t something you’d hear about.’
‘For a few years, we stumbled along with the menopause diagnosis. But more dementia symptoms began to appear, including memory loss.
‘Dad and I were in the car while a radio programme talked of something called “Alzheimer’s”. We’d never heard of it, but thought “dementia” was an older person’s illness. It was hard for us to fathom. I remember Dad stopped the car, we looked at each other and both agreed that Mum must have Alzheimer’s disease.
‘Mum went back to the doctors for more tests. It took a few years, but she was eventually diagnosed with dementia.’
Support from our community
'We were part of a small community in a rural area of South-West Scotland, so there was little dementia support for us at that time. Mum began to struggle at work and had to give up driving. It was for her own safety as well as others, but stopping driving felt like the last part of her independence.
‘Life began to feel quite small. That was the downside of being in a rural area because we didn’t have any access to resources or organisational support at the time.
‘Thankfully, the community around us was lovely and people were so kind. There was a brilliant group of women who would come and play Scrabble with Mum for an hour a day. She was able to go for a few walks to feel less isolated, and have coffees around the town.
‘Looking back, I realise how vulnerable Mum was, but we were so grateful for the people who knew her and helped to look out for her.'
‘As Mum’s condition progressed, it became very isolating for all of us. Dad had to keep working to support the family. He started to feel very alone.
'Dad did have a couple of amazing friends that stuck by him through thick and thin. But he also had to cope with my parents' friends crossing the street to avoid them. This compounded the isolation for my dad. That was devastating.
‘Alzheimer’s disease was very new at the time, so people didn’t know what it was or what to say. They might’ve thought it was only about being forgetful, but that’s only the tip of the iceberg – there's so much more to it.
‘Dementia support groups for carers would have been invaluable for him. And Mum would have loved taking part in a dementia choir or Singing for the Brain. I would have appreciated a young carer’s support group, too.’
My message to other people affected by dementia
‘If you’re caring for a person with dementia right now - and if you’ve got it in you, because I know how weary things can get - grab any chance of respite you can. Go to a dementia support group with other carers, or together with your loved one. Reach out to someone, because having support is so important. Carers can feel very protective over their loved ones if they’re vulnerable.
‘And if you know someone affected by dementia, please don’t run away or be scared to say the wrong thing. Please don’t turn your back and not engage because you feel awkward. Check-in and ask them how they are twice to make sure they’re not putting on a brave face. It’s that connection, conversation or understanding that can mean so much.
‘Dementia is a difficult and private thing to talk about. But we also had good times among it all. Sometimes our way of coping was laughing together.
‘There was so much more to my beautiful mum than dementia.’
‘Mum was really clever. She was funny and kind, too. Sometimes when you’re in the midst of it all, it takes quite a long time to get those memories back. But in later years, those memories have been coming back to me.
‘It’s important to pool together, as family or friends, so that one person isn’t caring for another on their own. It can be hard to reach out. Please take a step towards support.
‘We also need as many people as possible to sign the Cure The Care System petition. There needs to be as much noise as possible about it so we can get a higher volume of people behind it. We must have our voices heard.’
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