A woman is sitting in a dark room by herself talking on the phone

Kate Dickie's personal inspiration behind our Cure the Care System dementia film

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.’ 

Framed family photographs on a bedroom dressing table

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.’ 

A woman is embracing a man, her husband, in their house

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. 

Our dementia advisers are here for you.

‘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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16 comments

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The video is excellent and very moving and I know many people can relate to it. My Mum has been in a care home since the middle of last year after being in hospital and has since had a DoLS issued due to her dementia. Obviously we couldn't visit back then and now she has lost the ability to communicate.

The only visits possible more recently (end of last year) were in a portacabin where we could only see a confused, distressed old lady who clearly didn't understand what was happening.
My sister and Dad in particular found this upsetting, so much so that my sister decided that it would be best not to take Dad until they could have a "proper" visit in person. Dad has dementia as well but not as severe as Mum and was also confused about
the situation and needed regular reassurance and reminding about what was happening with Mum.

He had a stroke just before Christmas last year, so I took leave from work to move in and help him which wasn't too difficult as he retained a fair bit of independence. We arranged a visit for him to see Mum in March- when the government said it was ok - this was the first time they had been together in nearly a year but he wasn't sure if she recognised him. Unfortunately he has since had a second stroke which was much more severe, so he was in hospital at the end of March and Mum was in the care home, this was their 60th wedding anniversary. We (sister and I) have managed to get him into the same home as Mum now but he is currently in isolation but we have a visit this coming weekend.

I have signed the petition and agree that the care system needs to change. I have also written to my MP twice recently about this. Unfortunately I don't think this is enough, my MP didn't really address anything I raised and didn't answer any of my questions. Just replied with cliches and political rhetoric. I wont mention his name but he represents Newark (Notts).

I hope the petition achieves something but I wont hold my breath, Prime Ministers have said for years they will "fix the social care system" (a point I made to my MP but was completely ignored) but
what has changed and why do we think it will change now?

I think more direct action is needed now, such as people who are paying for care should stop paying en mass. The only thing that speaks in this society is money and it is likely to be the only thing that gets the attention of people in power.

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Thank you for sharing as so many of us feel. Very powerful and tears came flooding back again. I felt the same so so many times over the last 2 1/2 years. Something has to be done to help us all in this situation. It is not just the dementia patient it is You the carer and family too.
It is the hardest job in the world. Cure the Care System needs immediate attention to save us all going through the dementia system.

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Very good film and so accurate . My husband went into hospital yesterday to have a Pacemaker fitted. He has very little sight and hearing. He was confused when I left him in the Ward. Other patients in the Ward won’t understand his condition and I’m not sure he understands why he’s in hospital or why I left him there. It was heartbreaking leaving him yesterday. Because of Covid visiting is strict. I can’t wait to see him today to reassure him he is safe and I’ll bring him back home hopefully safe and well. The nursing staff are very kind and understanding but obviously don’t have time to be with him . I’m exhausted but as his very willing Carer I’ll carry on Caring because he’s ‘Frank’ not just a patient with Dementia. Mary

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Thank you for such a hard hitting film. It shows the reality of Dementia. More people need to be made aware of how it impacts the carer especially the isolation. The Care System needs an Immediate overhaul.

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A really hard watch, but so realistic. Important for everybody to see just how dementia destroys families in the hope it can lead to the social care system being overhauled. Brings back painful memories of my parents, and I can only imagine how they managed when they were alone, which was most of the time.....

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It is assumed that anyone caring has the time to watch tv or films by any media at all, as indeed, this blog. I don’t have time to read any of it. I am still in the clothes from yesterday morning that I slept in. The level of communication around this country, needs to be vastly improved for accuracy. No wonder we had a pandemic around the world, the knowledge of hygiene standards was appalling, as is the assumption that people have the privacy in which to be able to communicate.

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Sara, we're really sorry to hear this – it sounds like you have been going through such a difficult time.

Please know that we are here to provide you with support. You can speak with one of our Dementia Advisers by calling our Dementia Connect support line on 0333 150 3456. They can listen to your situation and discuss ways of providing for your current needs. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also like to talk with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may be going through a similar situation: https://forum.alzheimers.org.uk/

In the meantime, we want to reassure you that we are doing as much as possible to make a positive change for people affected by dementia.

We know that the right care and support services can make a huge difference for people living with dementia and their families. People affected by dementia can draw on professional support to help them live their lives how they want to. It can enable families to spend more time in their most important roles – that of husbands, wives, sons and daughters.

Our Dementia Action Week petition that calls on government to Cure The Care System has already exceeded its initial goal of 100,000 signatures: https://action.alzheimers.org.uk/page/80202/petition/1

We are making our voices heard by change makers in the UK, and Alzheimer’s Society will continue to speak for anyone who is struggling when they aren’t able to do so themselves.

Please do call the support line on 0333 150 3456 for help or when you need someone to talk to, Sara. You are not alone.

Alzheimer's Society blog team

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Kate’s video shows just what we are going through right now. 😢

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My future with my husband🥲

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Just watched Kates video and found it powerful. I also made something similar that affected me with a family member it helped to write my story down so I sent it to Amanda Waring and she put it on soundcloud under Amanda Waring " Letters about Mary" please listen its a persective from 3 of us going through this journey of navigation of the care system and feelings and myself as a professional and how that made me feel. Sadly although a bout 3 yrs ago that was we fought another battle last weekend with AE a place someone living with dementia should not be unless we change the support in these places as well. It was horrendous and not a place I would want my loved one to go again. Lets change this support, I have petitioned the MP.

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Thank you for making this film, it’s hard hitting and very emotional just as it needs to be to get the message across.
It took me back to last year just before my husband had to go into care so many tears were shed. I truly hope this can be the start of a care system reform.

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Heart felt film Kate and your own story of your Mum. All and so true. I had a tear in my eye watching the film. My lovely Dad was cared for by my elderly Mum who put on a stoic face over the years of decline. Great campaign.

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So proud of you Kate for such a beautiful film and your bravery in making it xx

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Thank you for showing the raw side of dementia... the care system needs to be reformed now!

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I would like to support this cause I work with many clients and families that have little support

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Thank you, Beverley - we're grateful for your support.

Once you have signed the petition (https://action.alzheimers.org.uk/page/80202/petition/1) please continue to help the cause by sharing it with friends, family and colleagues.

-

Alzheimer's Society blog team

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