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Living with dementia

What is it like to live with dementia? Is it possible to have a good life? How should society change to make things better? And how have people with the syndrome coped over the last 18 months?


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September 2021


Earlier this year, Anthony Hopkins (aged 83) accepted the Academy Award for his role in The Father. In the film, Hopkins plays a man living with dementia. His character says in the film , “I feel like I’m losing all my leaves.” Critics praised The Father for its depiction of how the syndrome can affect someone. But is it realistic? Is it helpful for films and TV to show people living with dementia in such a way?


Challenging experiences

Most of us will know someone with dementia. Over 8500 of people in Leeds are living with the syndrome. All of us probably know that dementia is about memory loss, but it’s not just that. It can affect how we speak, think, feel and act. Many older people living with dementia have had difficult or challenging experiences when out and about; others feel judged by other people. Many of us will have seen stickers in cafes and shops claiming their venues are “dementia friendly”. This means that staff have learned about the syndrome and how people with dementia might behave. It’s a welcome initiative. Do look out for the yellow and blue flower logo (it’s of a forget-me-not. Neat!) But there’s plenty more to do – especially after the pandemic has affected all health and social care services over the last 18 months.

Most of us will
know someone with
dementia Over 8500
of people in Leeds
are living with
the syndrome
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Quote Red Right-01.png

We may have an image in our minds about what someone with dementia looks like and how they behave. But the reality is often very different. Shine met with a group of people living with dementia to find out more about how they live and what they think needs to change in society.
The Up and Go Group is made up of people in Leeds living with dementia and their partners. The idea is to work together to help make Leeds a more dementia friendly city. They talk about all sorts of issues that are important to people with dementia– issues like public transport and how arts events can be made accessible.
Up and Go is part of the Dementia Engagement and Empowerment Project (DEEP), which is a national network of groups of people living with dementia. The group is supported by Leeds Playhouse and Leeds Older People’s Forum.
We meet the group to talk to them about their experiences of dementia. They start by talking about how beneficial it is to be part of the group. Lyn tells us about how important it is “that we are listened to.” Lyn cares for her husband Mick, who has a dementia diagnosis. Lyn lists other benefits: “Friendship, communication, knowledge – and knowing we can contribute our thoughts and feelings.”
Warren has dementia and he agrees with Lyn: “It’s a very friendly group. Nicky and Sarah are always very helpful. They listen to members of the group if they have any problems or concerns.” Nicky Taylor is from Leeds Playhouse and Sarah Prescott is from Leeds Older People’s Forum. They work together to make sure the group runs smoothly. In recent months, the group has had to meet on Zoom as opposed to in person. “Nicky and Sarah put a lot into the group,” says Warren. “Sometimes they go above and beyond. I can’t praise the group highly enough.”
Rosa lives with dementia too and she is similarly effusive. “We all get on well together,” she says. “The group is absolutely brilliant. So many different topics that we talk about.” It’s clear that many people with dementia relish the chance to meet others and share ideas about how to improve things for themselves and others. There’s a real benefit in talking to others with a similar diagnosis. “It helps to reduce isolation,” says Warren. “You’re not on your own, there are other people in the same predicament as yourself.” There are other benefits too, according to Valerie - another member who lives with dementia. “It makes you aware of all the help that’s available,” she says. “Also, how to deal with it."
The group are clearly passionate about making a change. They all agree that things do need to change in society to improve life for people with dementia. A lot of the problem is the perception of dementia amongst people who don’t have it. Valerie is adamant that the general public don’t know enough about people with dementia. Things have changed over the years. “People with dementia would have been set apart in previous generations,” says Valerie.
But even now, public consciousness about dementia isn’t very good. “We can’t expect people to make allowances for us if they don’t know there’s something different about us,” she says. “Knowing how to cope with these things when they come up.”
People’s attitudes are key. “Someone described it to me recently,” says Valerie. “I said that I’d got dementia and they didn’t know you could be normal! We are people. The reaction you get when you say you have dementia – you can see people thinking that’s the end of a normal conversation."
Rosa believes that one of the things that people need to understand is that “everyone’s dementia is different; it progresses at different times.” Everyone who gets a diagnosis of dementia will have a unique experience. “I find that often people know someone else who has got dementia,” continues Rosa.  If you act differently to the person they know, they might say, ‘Oh, you haven’t got it because they can’t do this - and you can.’ That’s got to change.”
Valerie has a unique perspective on the issue; she looked after her mother, who also had dementia. “I thought it would be helpful, having seen her go through it,” says Valerie. “But it’s a bit detrimental really. I now know how I should have helped her more. I’m thinking all the time, ‘If only I’d done that with Mum’. But you can’t. There are always ifs and buts. When you’ve watched someone go through it all, nothing’s new. There are variations. It’s not the same, you having it as them.”
Changing perceptions
How might the public’s view of dementia be changed? Warren has an answer: “I think there needs to be more information for the public to be made more aware. A one-page leaflet, just giving the basic information about dementia and how it can affect people. The leaflet could go into public buildings – libraries and community centres – so as many people as possible will see it. It might help people get a better understanding of dementia. A high proportion of the population just don’t know what dementia is, or they have minimal information. A leaflet would help. Or someone with dementia could go on Radio Leeds and talk about how it affects them.” Mick and Lyn agree. “Definitely more education,” says Lyn. “Until Mick got diagnosed, we didn’t think about dementia. People don’t really talk about it. It’s not spoken about as much as it should be. I suppose it’s like cancer. Nobody used to speak about cancer. Now everyone does, nobody’s afraid to say it. We have to learn to
say it and not be afraid of it.”
As Lyn says, often it’s just about saying the word ‘dementia’ and not hiding under euphemisms. Valerie shares a story about when she was matter-of-fact and honest: “I came out of church on Sunday and realised I wasn’t hearing very well. I thought I’d lost my hearing aid. People were helping me, all looking for it. But I’d said ‘earring’ instead of ‘hearing aid’. I’d mixed the words up. And all these people had been looking. I said, ‘I’m sorry, it’s just the dementia.’ I think if we can bring the word into normal life, it might be more accepted.”
After talking to some people living with dementia, we thought it would be useful to talk to a professional. Dr Sharon Nightingale is a consultant psychiatrist who works with older people with mental health issues in the north of Leeds. We asked her initially about how the pandemic has affected the people she works with:
Covid lockdowns have been particularly hard for people who are suffering with difficulties with memory, whether it’s diagnosed as dementia or not. Forgetfulness is a real battle if people change their routine. One of the lovely ways to keep living well with dementia is to have a really good structure and social input – this might be with family, with friends, it might be your day-to-day routine. Going out for lunch once a week, maybe. With lockdown, that really impacted on older people with memory problems. It meant the cues that might help them orient themselves or enable them to get through the day – they were just shut down.
In Leeds – and nationally – it meant that early diagnosis was either stopped or massively delayed. It just wasn’t worth the risk that the person might get Covid. Since people have been double-jabbed that diagnosis has got a lot better. We are trying to get back to giving people an early diagnosis. The reason to focus on early diagnosis is to maximise their wellbeing, to help with social structure, so the person can take more control of their health.
It’s not just those patients who haven’t had that early diagnosis, it’s about those family members who’ve had to hold it all together. There has been a lot of stress for carers – and people who wouldn’t even see themselves as carers. Often it’s husbands or wives that have been married for 50 years. They notice their loved one getting a bit forgetful – then 18 months later it’s made a massive impact on their lives and how they reintegrate back into the world. People need even more support – and this is at a time where is less social resource out there. Day centres aren’t yet at full capacity, a lot of luncheon clubs are closed, people are struggling to provide structured social activities. It’s a real battle to get back to how we were. We were doing so well in recognising how important it is to break down the stigma about dementia, get a diagnosis really early, then get support for both the patient and their loved ones. We’re still fighting to kind of get back on top of it. If you can get in there early and get all that support or the patient and family, people can often live well with dementia for a long time.

It's clear that Sharon believes that early diagnosis is key to helping people live better lives. She was also keen to stress that dementia isn’t just about your memory going.
There are behavioural and psychological symptoms of dementia, which are things like your emotional wellbeing, your sleep cycle, your motivation, your agitation or irritability. These are all up and down. 98% of people will get some kind of behavioural and psychological symptoms. But the best treatment is never drugs and doctors. It’s always about structure and social stuff. One of the best things for agitation and apathy is being able to go out for a walk. Interacting with loved ones, doing activities, singing – or even something as simple as going to the park. This can have a massive impact.
The last 18 months have been difficult for people with memory issues. But as we go forward, Sharon has a clear message to older people who might be concerned about their own memory, or that of a loved one.
Please come to your GP and talk to them! We want to get as many people diagnosed as need it, so we can make sure they get the right support to deal with the symptoms. You don’t physically have to go to a GP surgery if that feels uncomfortable. Most places will now have a way you can talk to people over video call.
Though dementia is a serious disease, many people living with it are capable, fulfilled individuals. The Up and Go group agree with Sharon. “I think if we can bring the word into normal life, it might be more accepted,” says Valerie. “You are a bit set apart because you are different to other people. It’s just a matter of saying, ‘ Yeah, this is me. Deal with it’ We’ve got dementia – but we’re still us.” People with dementia can live happy, busy lives: they are human beings! Mick has the final word: “It is what it is. I just cope with it the best way I can. As long as the football and cricket keep going, I’m fine!”

6 brilliant projects in Leeds for people living with dementia
Memory Cafes
The cafes are monthly gatherings for people living with dementia and the carers to reminisce, make friends and have a good time in a welcoming and relaxing atmosphere. There are over 50 cafes in Leeds!
Phone Leeds Older People’s Forum to find one near you: 0113 2441697

Dementia Friendly Leeds
A campaign to raise awareness of dementia and make services more accessible. The campaign encourages organisations and business to get training and become “dementia friendly”
Memory Bank
A series of DVD resource packs made by Yorkshire Film Archive for use in reminiscence and life story work with older people. Each themed pack comprises archive films from the collection – schooldays, holidays working life – and more. 01904 876550
Dementia-Friendly Theatre
Leeds Playhouse regularly puts on special performances that are specifically designed to be accessible to people living with dementia. Each season has at least one dementia-friendly performance. 0113 2137700
Dementia-safe housing
A new housing development, specifically designed for older people living with dementia. Part of Leeds City Council’s £30 million Extra Care programme, managed by the Home Group.

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