Three carers reveal what it's like living with dementia 24/7

The five distinctive sky-blue petals of the forget-me-not, surrounding a star-shaped flash of white and a yellow centre, have long been a symbol of remembrance, enduring love, and faithfulness. But in recent years, the charming spring flower has been given a new meaning. It was adopted for Alzheimer’s Society’s logo in 2016 and became the face of the charity’s first annual Forget Me Not Appeal in 2022.

Running throughout June, the flagship fundraising campaign encourages people to wear a blue fabric badge in memory of their loved ones with dementia or to show solidarity with those affected. This year, the appeal is highlighting the impact of the brain-wasting syndrome on both people with dementia and their carers. A recent series of reports by the charity found that patients wait, on average, 3.5 years from the onset of symptoms to diagnosis. Almost 250,000 people in England have been diagnosed with early memory problems, but there is no national system in place to monitor progression to dementia.

Alzheimer’s Society has warned that the UK is “stuck in a system of delay, denial and neglect” which means too many families are falling through the cracks. Chief executive Michelle Dyson said: “In the digital age of instant answers, people are still waiting far too long for a diagnosis of the country’s biggest killer. That would never be tolerated in cancer care, yet for dementia it has become routine.”

The impact also ripples out to the army of at least 700,000 unpaid dementia carers in England who are propping up the social care system. For some, the only support available comes from charities and community groups. Today, three carers have shared the moment they realised something was not right with their loved ones, and the importance of reaching out for support.

Watching someone you love change because of dementia can be a deeply frightening and overwhelming experience, compounded by a system that is failing families at every stage, Ms Dyson said. She urged people with dementia and their loved ones to reach out for support, adding: “No one should have to face their hardest moments alone.

“Alzheimer’s Society is here to provide help through our vital support services and hope through our ground-breaking research and our consistent fight for changes to the dementia care system. If you’re worried about yourself or a loved one, please reach out to Alzheimer’s Society. Support is available and can make a real difference.”

Mike’s husband Tom was just 53 when he began experiencing memory problems in 2008. He found it increasingly difficult to understand new tasks at work and retired from his job as an NHS pensions manager on medical grounds three years later. But the possibility that his problems were caused by dementia never crossed the couple’s minds.

“There was a very clear moment that things weren’t right during a simple meal out,” Mike recalls. “I stepped away briefly and when the food arrived, there was nothing for me. He hadn’t ordered my meal. That feeling hit me hard, because it was so out of character and couldn’t be explained as forgetfulness. I still didn’t know it was dementia, but it was clearly something."

Then Mike began noticing other anomalies — Tom started buying handwash every time they went shopping, accumulating around 20 bottles in a cupboard. "We were losing teaspoons because he would throw them away with the yoghurt pot whenever he had one," Mike adds. "All these small things started to add up.”

After seeing his GP, Tom was told the likely cause was stress or depression. It was not until 2016 — eight years after the symptoms started — that a neurologist diagnosed progressive supranuclear palsy and dementia.

“It was such a shock,” Mike says. “We had very little help after this. We were referred to Alzheimer’s Society and went to some support groups which helped. Being around people who understood what caring for someone with dementia was like was incredibly important because caring for someone 24 hours a day is unbelievably hard. You don’t know what it’s like until you’re in that position yourself.”

Like many spouses who find themselves suddenly transformed into carers, Mike found it impossible to switch off. He adds: “There is no time to yourself but you have to keep going. That’s so difficult with dementia because you know that, unlike with other conditions, the person you love is only going to get worse and become more dependent on you. That the charm and personality of the person you fell in love with has partly gone and will continue to disappear."

He adds: “Dementia also brings real financial consequences, especially when caring for someone at home with little support. My early retirement meant I had a reduced income and smaller pension.”

Mike cared for Tom until he passed away in 2022. Despite the challenges, the devoted husband remembers moments of joy: “Even when he lost speech, there was still connection. Holding hands, a smile, small gestures of reassurance. We found a way to stay lovingly connected without words, and those are the moments I hold on to."

Jenine cares for her mum Rosemary, 73, with her sisters, Adele and Syreeta. They first noticed that something was not right in 2021. “When most people think of Alzheimer’s, they think it’s just memory problems,” Jenine says. “For Mum, it really started with her communication. Her speech was one of the first things to be affected. Then we noticed she was losing her ability to read and write. She was always an avid reader but she suddenly couldn’t do it anymore."

Rosemary was adamant that all was well, but the sisters knew otherwise. Jenine says: "We kept pushing her to go to the doctors, if not for her, then for us. Eventually she did and after around 18 months of testing, her diagnosis of Alzheimer’s disease was confirmed.”

That moment, when a neurosurgeon confirmed the diagnosis, is one of Jenine’s most painful memories. She adds: “There had been dementia in my mum’s side of the family, so we always thought it was inevitable. But nothing can prepare you for the diagnosis. It was one of the hardest moments we’ve faced as a family.”

The sisters became their mother’s carers almost overnight, taking it in turns throughout the week so Rosemary was never left alone. Each day seemed to bring a “new normal” that the devoted trio was forced to adjust to, Jenine says. She adds: “Adele’s commitment has been extraordinary — she and my nephew moved into Mum’s home to care for her day to day, and without them she would almost certainly already be in a care home.

“We’ve had to support each other, as well as Mum, throughout all of this. We’ve also been able to access so much help and support since Mum’s diagnosis. We started going along to a local Alzheimer’s Society Memory Café and a Singing for the Brain group. They’ve been a lifeline for us. Mum was always the life and soul of the party and these groups keep her active and sociable.”

Being around other people who know what they are going through has proved invaluable for the sisters. “They understand in a way no one else can,” Jenine says. “My biggest advice for anyone in a similar position is to talk. Have those conversations, with loved ones or with a charity like Alzheimer’s Society. There will always be someone there to listen. It’s a difficult journey but you are not facing it alone.”

Ken noticed the first small changes in his wife Wendy, 88 — who also lives with Crohn’s disease — around two years ago. “Her conversations were a bit confusing,” he recalls. “She occasionally needed support to finish sentences. Because I know her so well, I’d often fill in the blanks, overlooking that it could be a symptom of something like dementia.”

Mum-of-two Wendy was a former accountant; she and Ken owned several businesses together. Wendy’s GP referred her to a dementia specialist last year who diagnosed Alzheimer’s disease. “It was a shock, and it all still feels very new and fresh,” Ken says.

“Becoming a carer has been tough. It can feel lonely and isolating at times, especially when you don’t understand everything that’s going on. We try and take it one day at a time. Some days Wendy’s her usual bright and energetic self, but other days her symptoms seem worse and the confusion impacts our daily lives a lot more.

“We’re trying to not let dementia override our lives and still enjoy going out for lunch and going shopping together. I provide support for her when she needs it but let her have her independence where possible.”

Ken was introduced to Alzheimer’s Society and a local dementia adviser called Claire, who helped the couple find their feet post-diagnosis. He adds: “I feel reassured knowing my options for support for the future as Wendy’s symptoms progress.

“I’d urge anyone to reach out for support if they need it. You’ll be reminded that you’re not alone and that there are kind people who understand what you’re going through and can support you.”