The experiences of those living with dementia

Christine Nacey compares dementia to being on a motorway with no way to get off and no idea how fast you’re going.

Dementia is the term used to describe a group of symptoms affecting a person’s memory, thinking and social abilities. These symptoms can be caused by Alzheimer’s disease which along with vascular dementia makes up a majority of cases.

According to Alzheimer’s Research UK, “dementia changes family relationships, leaves people socially isolated, and affects both the health and finances of family carers. All too often, family carers sacrifice their own well-being to ensure their loved one has the best care possible.”

The condition affects approximately 944,000 people across the UK and this number is expected to grow to 1.3m by 2040. Nearly a third of those who have it are currently undiagnosed and around 500,000 people care for someone with dementia alone.

Christine’s husband Paul Nacey now 75, was diagnosed two years ago during Covid after their daughter came up from London and told her that something was not right. An appointment quickly led to a diagnosis and Paul is now on medication.

Originally from St Helens, the couple currently live in Formby but since the diagnosis, their lives have changed. Paul, once an avid golfer, now no longer plays and travelling, something they used to do a lot, is now difficult.

Christine said they had been fortunate but added, “No matter what you do, it’s going to get worse. I feel cheated, grateful we had the diagnosis but cheated because we could go anywhere on trips but we can’t now.

“It’s a shitty disease because at the end of the day, this is a disease of the mind, not the body, their mind, because you are losing the person. You lose your future because you can’t look too far ahead.”

She said, “You have lost your best friend,” adding, “He gets upset at himself. He knows he has got confused and got it wrong and when you see him crying…”

Christine added, “Dementia is like a motorway, there is a slow lane, there is a fast lane and there’s the overtake but there is no slip roads off and you don’t know what lane you’re in

“You never know what your routes going to be. You never know. He might be dead before we get to that stage. It’s horrible not knowing what could be.”

Despite caring for Paul, Christine, 74, makes sure she continues to get out, exercise and socialise. She said, “You have to be twice as strong because you are not going to get that support. You have got to be strong and protect yourself. Your life is going to change but I make sure I do things.”

Tommy Dunne is currently living with dementia. Credit: Edward Barnes

One event Christine and Paul go to is a social gathering organised every two weeks at the Speke Training and Education Centre (STEC) by Thred. Thred is an organisation run by Pat Foster, Louise Langham, Paul Hitchmough, and Tommy Dunne BEM working with people living with dementia to improve their lives and educate employers and organisations about how to include people in wider society.

Pat, a former carer, said, “I started it up because we had been to so many groups that weren’t led by people with dementia which meant the activities weren’t what they needed.”

On 24 November, Paul Hitchmough and Tommy Dunne (pictured, lead image) performed songs at a party at a Thred event. Back in 2011 when Tommy was first diagnosed with early onset Alzheimer’s, he had been unable to speak.

This is at the core of what Thred is aiming to do, which is to illustrate how people with dementia can still be included in society. Pat said, “So many of them have got talents, skills and expertise that they can still use but they get diagnosed and they are out of a job and at home.”

A former rail compliance manager for Merseyrail, Tommy suddenly left a work meeting and went home. He was later found “on the bed shaking like a leaf” with his trousers, shirt, and jacket on the driveway.

The doctor initially said he had a breakdown and Tommy was later misdiagnosed with bipolar disorder. However following some scans he was properly diagnosed in December 2011 on his 41st wedding anniversary to his wife, Joyce.

He told the LDRS, “Until you hear those words, you don’t know what fear is. You think your life is over. You think I will be put in the home now. I worried my family wouldn’t be able to come and see me.

“At that time there was a lot of bad press about care homes. I was thinking I was going to get beaten up, there was a terrible fear that comes over you.”

Joyce and Tommy Dunne. Joyce cares for Tommy who is living with dementia. Credit: Edward Barnes

Now Tommy uses music to help revive people’s memories. He said, “Music is in a different part of the brain. You have some people who can’t speak who know all the works and sing all the words. There needs to be research about why music brings people out.

“I always use an analogy. Dementia’s a torch. It’s a positive and it’s a negative and you need a positive and a negative to make the torch shine brightly.”

The way cities and towns are built are often a huge barrier for people getting out and about. Dementia can cause changes to people’s visions meaning a doormat could become a black hole in the ground, stairs disappear, and 93% of homes lack basic accessibility.

Designing new homes and the layout of corridors and courtyards can be done in a way to encourage independence by making it easier for people to get home. As Wirral Council plans to build at least 14,000 homes by 2040 and regenerate huge parts of Birkenhead, it is working with Thred to look at making developments dementia friendly.

Tommy said, “It’s important because it’s no use building something and then making it fit. Why waste all that money if you get it right from the start? You would save a lot of time and energy,” adding: “Everything is done to stop us going out.

“If you want to do something for people with dementia, talk to them at the start and build it around them to make it accessible.

A recent workshop was held with councillors and senior officers on the issue. Tommy said Wirral has been absolutely fantastic, adding, “We feel they are actually going to move forward. We got a sense this wasn’t your average around-the-table group and they came up with lots of things about what can help and the people to do those things were there as well.”

Approximately 4700 people in Wirral are living with dementia and councillors Mary Jordan and Julie McManus have pushed for the local authority to do more. They said, “We want to enable people living with dementia to live well – to go to the shops, the bank, to use public transport and live as independently as possible for as long as possible.

“However to achieve this requires a supportive environment, one that accommodates how people with dementia see the world including the built environment, finances and one-to-one interactions. At this time of massive regeneration, we have a golden opportunity to design dementia-friendly features into our landscape.”

Behind every person living with dementia is someone who looks after them, sometimes having to give up work to help care for the one they love.  Joyce Dunne said they lost their jobs and had to sell their house and their car after Tommy’s diagnosis and bus and travel passes don’t cover plus ones adding a financial barrier for carers on public transport.

Joyce said Thred offers her an opportunity to offload and get support but added, “Thank god I had a good marriage and we did loads of things and went across the world. If I was trapped in a marriage where I hadn’t had that, I have thought about ringing Samaritans at times.”

While Tommy is outgoing and confident when at events, Joyce said he is very different at home. Though she’s realised she’s not lost her husband, she said: “You miss that part of him asking how are you today? I need him to put his arms around me and ask if I want a cup of tea. That is what I miss now.”

She added, “What he’s doing is great. He’s helping loads and loads of people so I am proud of him in that way but he’s not the same and you just learn to live with it.”

Being a carer can also be isolating. At events, Joyce said she is sometimes sidelined, adding, “Who wants to know my story, the unknown story? Who wants to know? It was as if I was invisible.”

Now when going to family gatherings and birthday parties, Joyce often goes alone as Tommy can’t go with her. She said: “I do not talk about it. I do not tell my family much because I don’t think it’s fair. I do keep things away from them, I don’t want them to think differently and I can deal with it.”

Information about Thred CIC can be found on their website.  They hold a lived experience network event every second and fourth Friday of the month between 12pm and 2.30pm at STEC in Speke.

Lead image: Tommy Dunne and Paul Hitchmough. Credit: Edward Barnes

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