As we get older, we may struggle to remember someone’s name. Or we might go upstairs and wonder what we came up for. But what if you have a more serious issue with your memory? Nearly a million people in the UK are affected by dementia. Dementia isn’t just about memory though – it can affect our ability to read, write and causes problems with balance and coordination. However, you can live well with dementia. We find out how.
MAY/JUNE 2023 ISSUE
There are lots of groups and services in Leeds and the area that help people live well with dementia. Over the page, we meet some of the people who are part of the Dementia Peer Support Service, run by Leeds City Council. This service welcomes people living with dementia and their carers for a variety of social and creative activities across Leeds - and with partners like Opera North and Leeds Playhouse. The service is run by “the Two Debbies” – Debbie Marshall and Debbie Catley. The Shine Team are welcomed into Leeds Art Gallery, where group members are making “edible sculptures”. There are a mixture of people living with dementia and their loved ones. “This is Peer Support,” says Debbie Catley. “You’re all experiencing similar things and you get support from each other.” The room buzzes with good humour and there is a welcoming, friendly atmosphere. Several couples told us their stories – we have selected a few to share here.
Jenny and John
Jenny is a music lover. She used to sing with a choir called Headingley Voices and is now part of a monthly Dementia Choir. She has been known to get up and dance around when the music starts. “I like it,” she says. “I really like it”.
Although Jenny was diagnosed with Alzheimer’s disease several years ago, she is still fit and full of energy. John is Jenny’s husband and he explained why being part of a group is useful. “We were looking for a social group for people with dementia,” he explains. The couple came across “the fabulous two Debbies”, who helped them find a suitable group. We’ve been coming for five years now,” says John. The pair are involved in a number of activities; later this week Jenny will be with the group at the Yorkshire Cricket Club. She “absolutely loves” Walking Cricket.
John says that peer support group has been a godsend, which they really look forward to. There is no patronising attitude at all. “A lot of the activities I enjoy very much myself,” he says. “And we meet other people in same situation.” John laughs and shares a look with his wife. “One of the reasons we like coming here is the teapots,” he confides. “They are very generous with the tea.”
Mick and Elaine
It’s not a great time to be a sports fan in Leeds. Both the rugby and football teams aren’t exactly riding high in the tables. However, Mick has faith! He and his wife Elaine are season ticket holders at Leeds Rhinos. “We haven’t got going this season,” he says. “We’ll get there though.” The couple are keen on football too; they live close to Elland Road and Mick used to play at an amateur level. Leeds United “aren’t doing too well” either. The couple really value that the Peer Support Group have links with both clubs. Both Leeds Rhinos and Leeds United welcome people living with dementia on a regular basis, hosting guest speakers and social groups. Mick recently and even had a go at wheelchair rugby. “That was fantastic,” he enthuses.
Elaine says the most important thing of this peer support group is that it’s not just for people with a dementia diagnosis, it’s for carers too. “It’s being together that makes it,” she says. There’s a real benefit to meeting and making friends with people in a similar situation. “All the carers have a chinwag,” says Elaine.
Elaine and Mick have found that getting out and about is vital for them. They both think that getting out of the house is important. “I hate being at home,” says Mick. The Peer Support Group provides them with loads of ways to occupy their time. Mick and Elaine are dyed-in-the-wool sports fans, but they have found themselves doing lots of creative activities, like art, sculpture and music. “I’m not very artistic!” confesses Elaine. Perhaps embracing your creativity is the answer when your team is on the ropes…
Malcolm and Christine
Malcolm has an infectious sense of humour. “When you’ve got to laugh you’ve got to laugh,” he says. He takes every opportunity to raise a smile. “He just jokes all the time,” says his wife, Christine. “It started with Al Johnson,” Malcolm recalls. He gives an impromptu rendition of “Sonny Boy”. Malcom has been entertaining people since he was 5. “I like being on stage,” he says “Not showing off, but seeing the people in the audience laughing. That’s what it’s all about. Though I’m more a singer than a comedy act”. When he was younger, he used to entertain older people in a care home. Nowadays. he does karaoke every week at a pub, where everyone knows him, young and old. “They enjoy it and I enjoy it,” he says.
Malcolm was diagnosed with dementia in 2019 and has attended the Peer Support Group for 18 months. It helps him manage his dementia and have fun. “It’s seeing people and having them laugh at you,” he says. “Laughing with you.” Christine enjoys the company; it gives her a break being the only audience member at home. “He can entertain somebody else!” she laughs. Christine has met different people who have become friends. “We’re not joined at the hip.” Like others in the group, getting out and about is important to
Malcolm and Christine. “Some people would say: you’ve got dementia – right, just sit in that chair. But you can’t do that.” Malcolm is full of stories – he even claims to have met the Queen at Leeds Children’s Day in the 1940s. Whatever the truth of his tales, Malcom has one thing in mind: humour. His eyes twinkle: “I’m just having a laugh!”
5 Things You Need to Know About Dementia
Many of us know absolutely nothing about dementia. We compiled the following pointers to help everyone understand the basics. We also spoke to Michael and his daughter, who shared their experiences with dementia, to help put the facts into context.
Michael was born in Roundhay - on the kitchen table! After attending school and college in Leeds and obtaining a degree in engineering, he became an army officer and professional engineer, working in the UK and abroad. Michael married in 1964 and the couple started a family. Michael’s wife died some years ago and he was recently diagnosed with dementia. He moved from Cheshire back to Leeds to be nearer to his daughter. He lives in his own flat in an extra-care residential development in north Leeds. We asked Michael to reflect on the basic facts and relate them to his own experience.
1. Dementia is not a natural part of ageing.
“I used to have memory problems,” says Michael. “But I just thought I had to make do and get on with things. It’s just old age.” He thought his forgetfulness was inevitable. Then he and his children recognised some strange aspects of memory loss that bothered him and he was getting muddled with everyday life. “It didn’t feel right,” says his daughter. Michael wanted to know what was causing these symptoms. It was a shock to have it diagnosed as dementia but he is glad that he went to the doctor when he did. “It was caught at the right time,” he says.
2. Dementia is caused by diseases of the brain.
Dementia is an umbrella term which encompasses many different diseases, one of which is Alzheimer’s Disease – this is what Michael has been diagnosed with. Like most people, he thought that the words “dementia” and “Alzheimer’s” were interchangeable and have exactly the same meaning.
3. Dementia is not just about losing your memory.
Michael recalls details of his past life but he tends to forget recent happenings and the sequence of occurrences. Words and names “get stuck”: he knows what he wants to say and has an extensive vocabulary when he is on a roll with his conversation, but it’s hard to think of the word. One of Michael’s big concerns is his reading and writing. “I find it difficult to string a sentence together,” he says. He views his attempts at writing as “ridiculous”, and says the words veer up and down the page. Although he can decipher the words, he finds it difficult to connect them to make sense in complicated texts. Forms are a problem! Fortunately, Michael can read children’s stories to his young grandson who loves this interaction with his grandpa. But it’s not just verbal - Michael’s coordination, spatial awareness and balance is affected too – and he’s had to give up driving.
4. It is possible to live well with dementia.
Michael emphatically agrees. “Oh, yes!” he says. “I try and do as much as I can.” He likes to get out and about. “I go on a walk at least once a day,” he says. He has developed a regular route around the local tarn. Michael lives independently in his flat but takes his main meal in the bistro in the complex, enjoying companionship with other older residents. He loves to help people, especially those who are less physically able than himself. “I wish I could do more,” he confides. Michael is always keen to volunteer to help in whatever way he can.
His local Neighbourhood Network Scheme helps Michael to live well. He enjoys the community café, eating-out group and cuppa-and-company sessions. Michael enjoys outings and recently he suggested that a few of the older members took a trip out to the theatre. Family is important to him too: he also loves seeing a lot of his grandchildren. Michael has lots of other plans too. “I want to join a local Bowls club!” he says. Michael is the embodiment of the message that you can live well with dementia. He sees his life as a work in progress and makes continual adjustments to live the best he can. For example, he uses his phone calendar and has a whiteboard to help him remember appointments. “It’s in your own hands what you can do as long as you can do it “
5. There is more to a person than dementia.
Michael and his family know that he is still the same person despite his diagnosis. He is sanguine about his dementia, saying you just have to put up with it and make the best of life. Michael has retained his sense of humour and intelligent insight into his condition and limitations. He acknowledges that his dementia is part of his life, but it does not define him. He’s a rugby fan, he loves being active – and he’s always thinking of others.
Michael’s positive can-do and disciplined attitude survives, reflecting his military and professional background. His home is tastefully decorated with mementos of his family and domestic life. He is decidedly his own person – and long may that continue.
We asked Michael and his daughter for advice for people experiencing memory loss or receiving a diagnosis of dementia. Here’s a few things they said, with a few of our own ideas too.
Seek medical advice as soon as possible.
Take action while you are still able to make adjustments and make decisions for yourself.
Acknowledge and accept a diagnosis of dementia. There is no point in being in denial.
Find other people who are living with dementia.
Retain as much independence as you can for as long as you can. Challenge yourself.
Know if you need help, ask for help.
Socialise with other people in as many ways as you can.
Help other people as much as you are able.
Leeds City Council Dementia Site:
Memory Support Service: 0113 231 1727
0113 380 4300
Alzheimer’s Society Support Line:
0333 150 3456
Age UK Advice Line:
0800 678 1602.
Admiral Nurses Dementia Helpline:
0333 011 4311.