Forget Me Not
The untold stories of those forgotten by their loved ones
Are you afraid of forgetting or being forgotten?
Maybe both.
Especially when dementia becomes a part of your life.
For those living with dementia, each passing day takes something away—places, moments, people. Their memories gradually slip away.
Meanwhile, their family members, who serve as carers, face a different kind of fear: the fear of being forgotten.
Imagine waking up one day to find that your parents no longer remember who you are, calling you by a stranger’s name, and looking at you with unfamiliar eyes.
But forgetting is not the only challenge.
For carers, there is much more to it.
Now, let people living with dementia and their families tell you what it is really like.
"I have more mood swings and become more aggressive towards my family just because they want to come for dinner. I feel that I can't cope with lots of people in the house anymore. I really hate myself for feeling like this" (Graeme Parsons, 68, Grimsby)
"It is a scary thought that I might make my family so miserable and sad and cause them to work so hard. I wish I could be sure that it won't be that way. I pray all the time not to be such a burden to my loved ones and that the Lord will take me home before I become like that. It makes it hard to stay cheerful." (Matthew Baire, 60, Magazine)
Sources: Dementia Support Forum
"My wife does not recognise me. At night, she doesn’t know who I am, she thinks I am a friend. I don’t have to wait for her husband to arrive and I can go home anytime. I don't know what she will do if I try to persuade her that I am her husband." (Nobo2)
Dementia does not only affect individuals who have this condition; but it also impacts their family, who then become their carers. It is a reality they have no choice but to accept.
How can someone look after their loved ones for decades?
How are they feeling?
And how can they survive?
This is where the story begins.
1. It is what it is
'I ceased to be John, I became daddy'
In the Victorian suburb of Westbourne, Bournemouth, there is a small apartment where an 83-year-old man lives alone. He is John Major, a former carer who now participates in the Alzheimer's Society research network.
He sat in an armchair, bathed in the afternoon sun streaming through the window and started talking about his wife, Helen Major. She passed away due to dementia 11 years ago, he still misses her.
John opened his family album, the wedding photo was the first to appear, bringing back many emotions.
"It was 60 years ago," John reminisced. At that time, he was a 23-year-old man, and Helen was around the same age. Together, they built a life, starting a family in their North London home. Laughter filled the house with their son and daughter. As the years rolled by and the kids left, they were not ready to slow down. A new dream beckoned, and together they moved to Bournemouth to run a business.
Helen and John were full of happiness in their wedding 60 years ago. Photo: John Major
Helen and John were full of happiness in their wedding 60 years ago. Photo: John Major
In 1995, everything suddenly changed when Helen told John that they had a problem.
“A problem? I wasn't aware of it. Nobody around us was aware of it. But she was.” John reminded the past.
“She knew that her thought processes were being challenged. Decision-making was getting harder for her.”
Helen then got a dementia diagnosis. The condition affected not only her life but also her husband's.
Michelle Donelan, the Secretary of State for Science, Innovation, and Technology, once said: "Dementia is an incredibly cruel disease, and as the leading cause of death in the UK nearly every family is affected by it in some way." According to NHS, one in three people will become a carer of a person with dementia in their lifetime. John is one of them.
Back in the day, Helen was just in her 50s. It was too early for the onset of dementia because she was too young and not even ageing.
"Services were based purely on age and not condition." John explained that her age made it difficult for them to find support.
In 1995, the couple had just moved to Bournemouth. Being a carer was not an easy task for John when dementia intruded into their lives.
John was no longer Helen's husband.
“I ceased to be John”, he said. “Progressively, I became Daddy. I think she was regressing. She was the little girl being looked after by her daddy."
This disease has deeply affected John, along with many others.
'He thought I was his friend'
Traditionally, as people reach adulthood, they might be expected to leave their parents, start their own family, and forge an independent path.
However, Simon McDermott’s story deviates from this conventional trajectory. After leaving the nest, Simon found himself returning to Blackburn in 2016, three years after his father was diagnosed with dementia. His return signified a considerable change from what was expected.
“I become less independent,” Simon reflected on his biggest challenge. His life has since revolved around taking care of his father.
“I wouldn't want Dad to be cared for by anybody else, you know?” Simon said. "Like I always say, if I had a family and kids and my partner, I would not be able to do it.”
The story of Simon and his father, Ted McDermott, captured media attention through their YouTube channel, The Songaminute Man eight years ago. Ted was a club singer, his performance of the song ‘Quando Quando Quando’ drew millions of views. They began filming carpool karaoke videos for a while, and in 2016, Simon helped his father release his first album.
Additionally, Simon raised over £130,000 for the Alzheimer’s Society through Just Giving, a global online social platform for fundraising. Two years later, Simon published a book titled ‘The Songaminute Man: How Music Brought My Father Home Again’ which recounts his father’s journey through dementia.
It has been six years ever since.
Now, Simon is 48, and Ted is 88. Ted remains at home 24 hours a day and always has someone to assist with washing and changing him. In the morning, a caregiver might attend to him, while in the evening, it could be his wife, Linda, or Simon after work. At night, the family engages in conversation. Ted can talk nonstop, but his words often come out as gobbledygook. Even though his speech lacks logical connections, Simon has learnt to understand what he is trying to communicate.
This is a typical day for them.
In the past, there were some moments when Ted acted ‘weirdly’. On one occasion, while Ted was watching television with his family sitting beside, he suddenly turned to his son with a look of confusion. When Simon asked if Ted was alright, Ted responded with a question: “You are Simon, aren’t you?” In spite of being puzzled by this reaction, Simon calmly replied, “Yes, I’m Simon.” However, Ted seemed unsatisfied and, still confused, turned to look for his wife. He asked her the same question: “You are Linda, aren’t you?
Simon and his mum, Linda, have looked after Ted for 10 years. Photo: Simon McDermott.
Simon and his mum, Linda, have looked after Ted for 10 years. Photo: Simon McDermott.
Some days, he became security conscious. He sat inside the house and spent hours and hours just counting every penny again and again. Some days he became aggressive. He couldn’t recognise himself and his wife. He then became violent with her and tried to attack her. Simon did not exactly know what to do. But as a son, all he knew was that he should separate his parents, he needed to calm Ted down. “Maybe I get him in the car and drive around,” he thought. Ted loved it, especially when Simon played his music and they together started singing. That was the moment he felt like music could bring his father back.
Ted has been a singer all his life. Photo: Simon McDermott
Ted has been a singer all his life. Photo: Simon McDermott
But Ted didn’t recognise Simon as his son.
“Back then, he thought I was his friend. God, that’s strange.” Simon recalled.
Unfortunately, the happiness from music did not last forever. The arrival of COVID-19 disrupted their routine and brought an end to their carpool karaoke sessions. Additionally, Ted’s condition has continued to decline, making it increasingly difficult to get him out of the car.
Over the past ten years, Ted has been like a little boy now.
“It’s like having a child,” Simon said. “You’re always constantly looking and checking that he’s not putting anything in his mouth.”
Dementia, while not a time machine, but it can make those living with this condition feel like passengers drifting through time. It seems like they are reverting to their childhood. It seems like the more dementia progresses, the more childish they behave.
This phenomenon is often described as a 'second childhood', echoing William Shakespeare’s lines from As You Like It:
Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion;
Sans teeth, sans eyes, sans taste, sans everything
Is that so?
Not just memory loss
When talking about dementia, many people simply think it’s just about forgetting. But forgetting is not the only symptom.
“Losing memory is a very characteristic of Alzheimer’s disease," Dr Aitana Sogorb-Esteve, an Emerging Leader at the UK Dementia Research Institute at University College London (UCL), and Race Against Dementia Fellow said. "But dementia has so many faces, that it can affect their ability to speak. They can’t put the meaning of the word. They understand the context but not the meaning. They have a huge change in their personality and their behaviour.”
"Dementia", derived from the Latin term for "out of one's mind," is now the seventh leading cause of death worldwide.
In the UK, nearly one million people are living with dementia, and it is estimated that this number will continue to rise in the coming years. Many factors contribute to this increase, primarily the rise in average life expectancy.
In terms of medical and research, dementia is not a simple condition.
“As researchers, we call dementia an umbrella term because it involves so many different pathologies and disorders”, Dr Sogorb-Esteve explained.
According to Dementia UK, there are over 200 subtypes of dementia with four most common types, which are Alzheimer’s disease, Vascular dementia, Lewy body dementia, Frontotemporal dementia.
Both Ted and Helen were diagnosed with Alzheimer’s disease, which affects one in six people over the age of 80 and one in 14 people over 65.
Dementia is an umbrella term for a range of progressive brain conditions. This disease can affect a person at any age but people over 65 are more likely to have it. Created with Inforgram. Source: Alzheimer's Society.
Dementia is an umbrella term for a range of progressive brain conditions. This disease can affect a person at any age but people over 65 are more likely to have it. Created with Inforgram. Source: Alzheimer's Society.
When someone is diagnosed with dementia, Dr Sogorb-Esteve explains that the disorder can take up to 15 years to manifest clear symptoms. Initially, there are subtle changes in the brain that lead to malfunction, followed by the gradual accumulation of toxic proteins and the slow death of brain cells.
People living with dementia gradually become ill and deteriorate.
This is what John witnessed during 18 years taking care of his wife.
“At the end of 18 years, and I can't pinpoint precisely when things happened but progressively she lost all verbal communication. She lost all abilities to handle food, cutlery and everything else, so slowly, slowly, slowly. She could not take her own weight, first of all, from a number of sort of aids, chairs, etc. to ultimately in bed all the time”, John said.
Symptoms and their severity can vary from person to person. While there is a stereotype that dementia involves a return to childhood—evidenced by Helen calling her husband "Daddy" or Ted being cared for like a child—this is not a universal experience and does not capture the essence of the disorder.
Harry Cayton wrote in 'From Childhood to Childhood? Autonomy and Dependence through the Ages of Life' (2005): “People with dementia are not going backwards; they are not going around in circles. They are moving forward on a journey many of us will have to take but none of us wants to make. They carry their childhood with them, as they do all the ages of their lives. We shall care best, and be cared for best, if we accept the child in all of us but never forget that, however disabled, we have grown into adults.”
When it comes to dementia, it's not just about memory loss or a return to childhood; it fundamentally revolves around caring and loving.
2. CARE AND BE CARED
A few weeks ago, I had the chance to attend a support group for people with dementia and their caregivers, where I spoke with an 85-year-old man who has been living with Alzheimer’s disease for about four years. Though he could barely hear me, he clearly conveyed that the true struggle lies not only with those who have dementia but also with their families. He spoke of feeling like a burden, which was heartbreaking. However, with the belief that when someone devotes their time and care to you, it is a profound expression of love, I told him he was loved by his wife.
Angie Nunez Merryman, reflecting on Alzheimer's once shared that: “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most.”
Family members become carers of people with dementia out of love and selflessness. But how can they provide the best care when this disease also exerts physical, psychological, social, and economic impacts on themselves?
Coping
Since the day John and Helen realised that they had a problem and might not have adequate support, they knew they had to accept that ‘this was life’. During 18 years, they managed to survive.
“The emotional challenge will never leave the carer," John said.
Dealing with emotional difficulties is their everyday battle. John couldn’t let his wife get bored because it led to her depression. He couldn’t shout or show any emotions because it confused her. He had to stimulate her brain to help slow her memory loss. Within only 24 hours in a day, John had to balance three demanding roles: caring for his wife, earning a living, and campaigning to raise awareness about dementia. The most important thing is providing Helen with mental stimulation.
John said: “Key points to it was an 18-year progression, not just an early start, but by involving her, keeping her socially interactive, going out together for as long as possible.”
Mutsai Hove-Bird, who has worked as an Admiral Nurse at Dementia UK for nine years, believes that enhancing social stimulation for people with dementia is crucial. She said, “For example, when a husband and wife can no longer engage in meaningful conversations or go out together due to one partner's decline in function, it can cause psychological distress and affect the mental health of the person with dementia.”
To address this, she suggests creating opportunities for social stimulation by engaging them in normal daily life activities.
Every day, before leaving home in the early morning, John would prepare a daily structure for Helen to complete. It was difficult for John to leave her alone in their house, but it was comforting when he returned home to find Helen welcoming him back and proudly showing him that all the boxes were ticked.
“But you have to realise, ultimately, ticking the list became the job, not actually doing,” John revealed his trick.
He also came up with a new idea using newspapers. John went to a stationery store to pick up a scrapbook. Helen’s mission was to go through the newspaper, cut out anything that interested her, and paste it into the scrapbook. This activity allowed her to practice many skills, including note-taking, reading, and cutting. The scrapbook was preserved carefully by John, but he eventually gave it to Bournemouth University Dementia Research Centre as a demonstration of the ageing pathway.
In 18 years, John became a master at treating and helping people with dementia. Even guiding them on how to sit requires significant effort and patience. Video: Uyen Ngo.
In 18 years, John became a master at treating and helping people with dementia. Even guiding them on how to sit requires significant effort and patience. Video: Uyen Ngo.
All these ideas came to an end when using scissors became too dangerous for Helen, and sometimes she would tick the boxes for tasks she hadn’t done. John also needed to lock Helen in their house to make sure she would not get lost. Even when it seemed like everything was testing John's patience, he still tried to live with it. He admitted that it was tough.
“If you want to bang your head on the wall, do it in the next room,” he laughed. “Face, eyes, and mouth, they are that person's window. Don't show your frustrations. You mustn't.”
Day by day, John tried to teach Helen something new. He would give her instructions, and Helen would follow them. She was uncomfortable answering phones when John wasn’t around, worried she wouldn’t know who was calling. But there was an exception for their children. When their daughter or son rang as John told them, the phone system would announce, “Hello Mum, it’s Julie/it’s Andrew,” and Helen felt confident answering.
John knew Helen enjoyed Indian food, which was beneficial as the spicy flavours helped stimulate her brain. However, he was also aware that she often overfilled her mouth. While preparing meals, John would add extra spicy to encourage her to chew. On special occasions, they would go out to a local Tandoori restaurant in Westbourne. Helen, seated in her wheelchair with her back to the restaurant, would savour her meal, enjoying the outing together.
Time passed by. One day, the clock ticked. John was informed by the NHS that he could no longer care for Helen, and she had to move to a nursing home. He recalled their words: “Sorry, she’s got beyond that.” He understood it was the reality, but he confided, “I felt awful. It was getting harder.”
Despite the nurses’ best efforts, the lack of stimulation in the care home was detrimental to Helen. In her room, there was a television positioned in the corner. During one of John's visits, the news bulletin was playing. Helen suddenly waved repeatedly at the screen and asked John, “Why won’t that man wave at me? I’ve been waving at him, and he’s ignoring me.”
The man she referred to was the news presenter.
“She recognises as a man, but why was he ignoring her?”, John said. “This horrifies me.”
Even more distressing, John became a visiting carer. Helen might find it harder to recognise him. One day, John, having participated in a fundraising memory walk for Alzheimer’s Society, wore a memory walk T-shirt and an Alzheimer’s Society baseball cap. When he arrived at the nursing home to see Helen, she began to cry.
“Do you know why?”, John asked. “I’d changed. What happened? She couldn’t accept this. What happened?”
John assumed that Helen had never seen him in that outfit before. She was used to him in a suit and tie from their time in London. He expected her to be pleased to see him, but instead, it turned into ‘a horror’.
Hidden effects
As John said, the biggest challenge for carers is always emotions, especially when their relationship with the person with dementia changes. In addition, they must manage to make money to cover all the expenses, often becoming sleep-deprived in the process. And if they ever consider giving up, they are plagued by feelings of guilt.
But they cannot 'shout out' or talk to their loved one to solve the problem due to communication barriers.
“Communication is a challenge with someone living with dementia because their reality is not the same as that of the caregiver or the person supporting them,” said Admiral Nurse Hove-Bird.
Family caregivers of people with demetia are often considered ‘invisible second patients’ or having ‘hidden roles’. With the number of people with dementia expected to exceed 1.1 million in 2030, the demand for carers will also increase. According to recent figures from the Alzheimer’s Society, there are over 700,000 unpaid carers of people living with dementia in the UK. Their contributions save the UK economy £21 billion a year, a figure projected to rise to £40 billion by 2040. Unpaid carers make a tremendous contribution in supporting people with dementia; however, they also need help themselves.
Professor of Health and Social Care Policy and Director of the School for Social Care Research, Martin Knapp, believes there are three common challenges for carers nowadays.
"First, I think many of them are sort of hidden carers; they don't think of themselves that way and don't seek support. Secondly, the support they provide in that role is burdensome, especially when the condition gets worse—it can be very stressful. Thirdly, there is not much support available for them," he said.
Karen Truman, a Dementia Coordinator in Gibraltar with 20 years of nursing experience and extensive training in dementia care agreed, “The common challenge is the lack of support.”
She explained that dementia has a massive impact, and without proper guidelines or education, it is difficult to understand the condition and know how to respond. Based on Truman’s experience, Gibraltar once lacked adequate help and support. The stigma that a person with dementia is incapable of doing anything made the situation even worse.
John also experienced this lack of support 30 years ago, reflecting a similar situation when there was not yet a comprehensive understanding of dementia.
However, things have changed significantly. Now, people can find support through their GP or health professionals, local social services departments, online discussion forums, respite care and hotlines provided by charities, and counselling, which helps reduce their stress.
But how much does it help?
Isolation
While making the decision to go back to Blackburn, Simon had no clue about taking care of people with dementia. Everything was new to him, and he found it difficult to find the right way to do it.
He then looked for help because ‘nobody tells you basic stuff.’
“The Dementia Talking Point (now Dementia Support Forum) is where to speak to other people in the same situation and try to get some advice. I found the National Dementia Helpline useful for the same reason,” Simon suggested.
“Sometimes you don’t really want advice, you just need to moan”, he added.
Simon also received support from Admiral Nurses, who provided tips on how to assist his dad with tasks like getting to the toilet or changing clothes.
“We had a nurse come round who provided more support for us rather than Dad,” he said. “She came every month to check in on us, see how we were doing, and provide support and advice on available help or any local groups Dad could join.”
Admiral Nurses are part of Dementia UK, a specialist dementia nurse charity. They work in various settings, including local community services, GP practices, NHS hospitals, care homes, and hospices, providing vital support for families affected by all forms of dementia.
Hove-Bird said, “We are unique in being the only nursing model that offers comprehensive family support. By providing respite care, we enable the family carer to have time out of caring.” Additionally, Admiral Nurses help bridge the gap in dementia awareness and understanding, empowering families to manage challenging days and cherish the good ones.
Like Dementia UK, there are many national charities that support people diagnosed with dementia and Alzheimer’s, their caregivers, and their families such as Alzheimer’s Society. With over 40 years of establishment, this organisation has become the UK’s leading dementia charity, providing a forum for people to share their difficulties and offering the National Dementia Helpline, which gives information and advice about dementia.
“Our priority is to be here providing help and hope to people living with dementia and researching the causes and treatments. We pledge to be here until dementia can no longer devastate lives,” said Jenna Goodridge, Supporter Engagement Advisor of Alzheimer’s Society. The charity also creates a platform to launch campaigns aimed at changing people's minds about dementia.
This support can help Simon and others in similar situations adapt to dementia and manage situations they have never faced before. However, to endure this disease over the long term, they must stand up on their own feet. The reality remains, and escape is not possible.
After participating in an evaluation of a carer support programme led by UCL, which focused on available research in the UK, Professor Knapp observed that some support services often do not last long.
"This form of support is very patchy across the country. It's relatively short-term, lasting about two or three months," he said. "And the problem is that it’s not available in many parts of the country."
Despite living with dementia for nearly ten years, Simon still feels a profound sadness as the condition worsens.
“Our lives are controlled by this illness. It’s not like cancer or something like that because you can still communicate,” Simon said. “But with dad, it’s difficult to communicate.”
Ted's condition is declining, making it impossible for him to manage personal tasks on his own. Simon described Ted as having become like a ‘strong mud’, indicating his increased reliance on others.
“He is missing out on a lot. We’re all missing out a lot.”
Since Ted requires round-the-clock care and Simon needs to work, he rarely sees friends and feels disconnected. He finds it difficult to socialise as he used to, leading to isolation and loneliness. Travel is nearly impossible.
“I’d like to [travel] but I suppose I can’t get away,” said Simon.
He also highlighted one struggle as the misunderstanding about dementia. Many people still associate dementia with just memory loss and assume that taking care of people with dementia only involves repeating what they have forgotten.
"If you haven't experienced caring for someone with dementia, how would you know? It's a real eye-opener to what support people need in old age," he said.
3. STAY THE COURSE
There is no cure
If possible, Simon still hopes for a cure; meanwhile, he tries to provide the best care for his dad.
There is currently no cure for dementia, even though the UK ranks second in the world in health research and development investment (£3 billion).
Dr Sogorb-Esteve said that many companies now are working on drugs to slow down the progression but a cure for dementia is 'impossible'.
“I think we won’t have a cure for dementia because dementia is not one disease. It’s so many different things,” she said. “We know so little about the brain.”
The NHS website also states that, since dementia is caused by various diseases, it is unlikely there will be a single cure for the condition.
Professor Joanna Wardlaw, an internationally renowned researcher in vascular disease and brain imaging, said research methods are also a reason why we haven't found a cure.
She said, "More attention should be given to factors such as vascular disease; too much dementia research relies on mouse models based on limited understanding of the disease and these may be misleading.
"Additionally, the mouse brain is a very poor proxy for the human brain."
Therefore, approved medications can only help slow the decline.
Assisted dying
Even with medication, many individuals struggle to live well with dementia. As they face prolonged suffering, some consider assisted dying as a means to escape their misery. While it can be an option, Simon never thought about it during the 10 years of caring for his dad. Although he understands the reason behind, he struggles to fully accept this choice.
Simon always wants to ensure that his dad has a happy life. Photo: Simon McDermott.
Simon always wants to ensure that his dad has a happy life. Photo: Simon McDermott.
He expressed, “I think it’s really sad that somebody should come to that point because they don’t think there’ll be somebody to care for them. I hope there is strong enough care that they don’t get into that situation.
“I wouldn’t want him [Ted] to say ‘If I ever get like that, just put me in a canal’. I’d want to care for him, and make sure that he feels happy.
“I’m completely against it. He’s my dad and he’s alive.”
Simon said he fully supports it for someone in severe pain, like with terminal cancer, but he says no when it comes to dementia.
Similarly, John also opposes assisted dying for those with dementia.
“I don’t think it’s an appropriate step. I had 18 years to prepare for the end of the pathway, but it was still so painful,” he said. “You don’t want the person to continue struggling with what they’re experiencing. And after the initial period, they’re not aware they’re struggling with it. They’ve accepted it as their life.”
He added, “Should they express a wish to die? That’s a different question.”
John highlighted that making such a decision for his wife would have been beyond him.
In spite of the controversy, euthanasia and assisted dying remain illegal in England, Wales, and North Ireland, and carry a maximum 14-year prison sentence, according to the Suicide Act (1961). In Scotland, assisting a person to die could lead to prosecution for culpable homicide. When it comes to dementia, the focus for both individuals and the government is on finding ways to live well with dementia rather than considering end-of-life options.
However, on 23 July 2024, The Assisted Dying Bill 2023 was passed by the House of Keys, allowing terminally ill adults on the Isle of Man the right to choose to end their life. The bill was supported by two-thirds of the island's 24 Members of the House of Keys at its third reading, meaning it will now move to the Legislative Council for consideration, paving the way towards legalising assisted dying.
Meanwhile, in the UK government, there have been several debates about this controversial issue. On 26 July 2024, former Labour Justice Secretary Lord Falconer introduced a bill that would allow terminally ill adults with six months or fewer to live to get medical help to end their own lives. Esther Rantzen, TV star and campaigner suffering from terminal cancer, has advocated for this bill. She told the BBC: “The law might actually change in time for me to die peacefully at home surrounded by those I love. Suddenly my heart lifted.”
There might be a glimpse of hope for changing the law, but how would it apply to people with dementia?
Dignity in Dying— an organisation that campaigns to pass legislation allowing terminally ill people with the mental capacity to choose assisted suicide —does not mention cases involving people with dementia in their campaign.
With dementia, determining a person's mental competence can be challenging because it can fluctuate over time; an individual might be clear-headed one day and confused the next. Many people with dementia eventually lose their mental capacity or may not meet the requirements set forth in the Mental Capacity Act in 2005.
"Somebody I Used to Know" is the first book by Wendy Mitchell, based on her experience with early-onset dementia and how she managed it. She wrote: “That’s what Alzheimer’s does: it’s a thief in the night, stealing precious pictures from our lives while we sleep.”
Wendy Mitchell presents a special case. Diagnosed with early-onset vascular dementia at the age of 58 in 2014, Wendy then became a prominent advocate for the rights of people with dementia. She authored books detailing her experiences and the challenges of living with dementia, raising awareness about the condition. Despite her diagnosis, Wendy remained aware of her condition and able to make decisions. As an independent woman her whole life and with a background in the medical field, she decided not to be defeated by the disease. She spent ten years campaigning for assisted dying and for the right to choose one's own death.
In the written evidence of the dementia debate, Mitchell wrote: “I’ve no fear of dementia, or even death itself. What I’m saying is that for me personally, death is a better option than living as a person who is totally reliant on others and bears no resemblance to the person I am now.”
In February 2024, Wendy died at age 68 after finishing her third and last book, One Last Thing: How to Live With the End in Mind. She chose Dignitas (a Swiss non-profit organisation providing physician-assisted suicide to members with terminal illness or severe physical or mental illness), a place that could provide her with ‘a dignified death’. Her daughters announced that she ‘died peacefully.’
Karen Truman had the chance to talk with Mitchell when she was alive and visited Gibraltar. In Truman’s memory, Wendy was strong in her opinions and wrote amazing books. “Wendy was an avid supporter,” Truman said. “She didn’t want people to make choices for her. She wanted to maintain her independence and not to be a burden.”
Talking about assisted dying is fundamentally about choice. There are people like Mitchell who don’t want the disease to control their lives, while others want to stay and cherish the best memories with their loved ones. How can they ensure their mental competency to make such a decision? When is the right time for them to decide? Truman noted that assisted dying is highly controversial because people can change their minds.
“If you've got to be 100%, how can you assure others you know well?” she asked. “It's a progressive illness and it's going to get worse. So if somebody is making their decision at that time, and if there's enough rigour to support that the person is 100% certain about choosing what they want to do, we should be able to support that.”
Truman suggested that discussing assisted dying with individuals at the time of their diagnosis might lead to a lot of negativity and distress. Instead, she advocates for broader societal education to help people better understand their options and choices.
“I think it needs to be moved away from focusing on dementia although it is important. Maybe if it was more of a society norm,” she said.
In spite of that, it still has a long way to go in the UK.
Photos: Max Gonzaler Bridger, Uyen Ngo
Photos: Max Gonzaler Bridger, Uyen Ngo
Photos: Max Gonzaler Bridger, Uyen Ngo
Looking forward
In a museum in Southwest UK, there is a weekly session called Jolly Day, where people with dementia and their carers come together to dance, sing, read poetry, talk, and enjoy themselves. This event provides a joyful escape from their daily struggles and suffering.
Sarah Rampton, founder of In Jolly Good Company, is behind this community group. She previously ran similar groups for the Alzheimer’s Society ten years ago. When this organisation discontinued their groups due to the pandemic, Sarah was concerned for those who no longer had a place to go, leading her to start her own initiative.
“We have everything from gardening and crafting to singing and playing music,” she explained. “People get actively involved with percussion instruments and drums. Some bring their poetry to read. We’ve also introduced a program of yoga and dance, which we’ve continued.”
These activities are designed to stimulate the brain and help participants regain lost skills. For carers, it provides a much-needed break.
Jolly Day welcomes elderly people and their carers every Thursday at Wimborne Museum. Photo: Uyen Ngo.
Jolly Day welcomes elderly people and their carers every Thursday at Wimborne Museum. Photo: Uyen Ngo.
Sarah noted, “If someone is being cared for by a professional or a family member, this offers a chance for them to have a bit of a break. Sometimes, the person being cared for might be able to interact with others in similar situations, or the carer can take a moment for themselves.”
In Jolly Good Company is one of many charities helping people with dementia and their carers to live well with the disease. Other similar initiatives include memory lane groups and carers' clubs, where individuals can come together to have fun and share their experiences.
Ted used to participate in a singing group run by Alzheimer’s Society with his wife, Linda. Although Simon did not attend the sessions himself, he noted that the group was a wonderful experience for their parents. Not only did Ted benefit from a non-judgmental environment despite his confusion, but Linda also had the opportunity to connect with other carers. They both found great joy in the group’s activities.
Receiving a diagnosis of dementia can be distressing, but finding a supportive community can help alleviate some of that negativity. Sarah mentioned that they consistently conduct Evaluation Reports and have received results showing that 84% of guests feel happier and 86% feel less lonely, reflecting an improvement in their overall well-being.
Regarding medical term, finding a definitive cure remains challenging, but there has been significant progress in research over the past decade. In the Be Part of Research podcast by the National Institute for Health and Care Research (NIHR), Professor John O’Brien, who specialises in Old Age Psychiatry and serves as an Emeritus Senior Investigator and the NIHR National Specialty Lead for Dementia, highlighted the importance of the drug aducanumab. He explained, "It’s actually an immunotherapy, so this is something that is injected, and studies have shown that it effectively lowers amyloid levels in the brain." Professor O’Brien also discussed the role of tau and mentioned the use of antibodies to activate certain inflammatory cells.
Professor Wardlaw is also conducting her own research on vascular disease, hoping to find a way to prevent blood vessel and brain damage through clinical trials in people.
In terms of promising approaches, Dr Sogorb-Esteve noted that: "There are many developments in therapeutics right now, with numerous companies working on drugs for dementia." Additionally, she added various innovations, such as aids and assistive technology, are helping people live well with dementia. These advancements include smart home technologies that support independence and improve the quality of life for individuals with dementia.
Although ageing is inevitable and the search for a cure continues, people can find ways to age well through lifestyle and diet, which can reduce the risk of dementia. According to the National Institute on Aging (NIH), studies have shown that healthy eating can affect the ageing brain’s ability to think and remember. It can also indirectly impact other Alzheimer's risk factors, such as diabetes, obesity, and heart disease. Staying active, eating healthily, and exercising the mind can all contribute to lowering the risk of developing dementia.
Professor Wardlaw said that dealing with dementia requires addressing not only cognitive issues but also physical health. She suggested: "Promotion of dementia prevention through a healthy diet, exercise, lifestyle, and attention to reducing vascular risk factors like high blood pressure, smoking, diabetes, and high cholesterol would make a big difference."
Rachel Woodward-Carrick, author of the book ‘Happy Silver People: How To Make Life Happier As You Grow Older’, has had two grandmothers and an aunt diagnosed with dementia. She believes that an active life benefits older adults in preventing dementia.
“It could be just quite small things like even within your home. We do the same things every day in the same way, so just changing your routine a little bit can make a difference in how your brain stays active,” she said.
At the age of 60, she not only looks after herself and her family but also includes her 88-year-old mother who lives alone. She added, “Every time we always go out walking with her, take her to different places, make sure she’s getting stimulation. I think that really helps her brain as well. She loves doing that. That's supposed to be a very good habit.
“Sometimes we do a craft session together. Last time, I bought cards, stamps, and ink for her to make Christmas cards. Sometimes we buy treats for the dog so she can interact with them. We go shopping with her, she’s got compost and all the tools for her gardening.”
Dementia can be a harsh disease, but it doesn’t have to prevent people from living well and cherishing precious moments with their families. It’s not an end—although communication and coping challenges remain, there are numerous ways to improve and ample support available.
Gradually, Simon has accepted the reality of his situation: “I think it’s a life lesson that I’ve learnt that sometimes, you have to change the situation.
Living with dementia has become his norm. As he said: “I can’t remember what it’s like not to have it in my life.”
Every day, Simon still spends his evenings after work taking care of Ted, simply because he is his dad.
For John, coping with the disease and the challenges of caring for his wife has been a long journey. Even now, he keeps Helen in his thoughts and speaks about her with pride at many dementia conferences where he presents. As a long-time research participant, John continues to reflect on his wife’s wishes.
“You can now see why, along the way, I transitioned from my original role of raising awareness, campaigning, and establishing support services to focusing on research,” John said. “I’m still monitoring research biomedical projects, Southampton locally, but also King's College London, UCL.”
At 83, he remains actively involved in research and is committed to driving change.
Both John and Simon continue to look forward, seeking ways to live well and combat dementia.
Special thanks to
John Major
Simon McDermott
Sarah Rampton
Karen Truman
Mutsai Hove-Bird
Rachel Woodward-Carrick
Dr Aitana Sogorb-Esteve
Professor Martin Knapp
Professor Joanna Wardlaw
Jenna Goodridge
Harriet (Dementia Support Forum Team)
Tamsin (Dementia Support Forum Team)
Alice (Dementia Support Forum Team)
Photo credits:
John Major
Simon McDermott
Max Gonzaler Bridger
Help and support for people with dementia and their carers
Alzheimer's Society: One of the largest charities providing support and information to people affected by dementia. Alzheimer's Society runs the Dementia Connect support line on 0333 150 3456, which provides information and advice about dementia. There is also Dementia Support Forum for people with dementia share their experience.
Dementia UK: Offering specialist one-to-one support and expert advice for people living with dementia through its Admiral Nurses, who are registered nurses and dementia experts. Call the dementia helpline 0800 888 6678
Alzheimer's Research UK carries out dementia research to find a cure but also answers questions about dementia and dementia research, including how people can get involved. The charity's helpline is 0300 111 5 111 and can provide help and guidance.
Age UK has advice on a range of topics, including advance care planning, benefits and choosing a care home, as well as information on local activities and services for those with dementia. It runs a free national helpline on 0800 055 6112.
Carers Trust provides information and advice on its website for carers, especially for carers who are unpaid, caring for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. 0300 772 9600
Carers UK is a national charity for carers, providing information and advice from benefits to practical support. 0808 808 7777
Contented Dementia Trust: The Contented Dementia Trust helps those who have already been diagnosed with some form of dementia and their carers. info@contenteddementiatrust.org
Young Dementia UK: Dementia Uk provide information on young dementia. This is a great resource if you or somebody you know are living with young onset dementia.
Telephone – 0800 888 6678
Dementia Friends: has been set up to help anyone gain a better understanding of the disease and then turn that knowledge into action. The aim is to create over 1 million dementia friends a across the UK and is open to anybody of any age and all dementia support groups, individuals and businesses are encouraged to get involved. 0300 222 5855
Nice (National Institute for Clinical Excellence): give guidance and support healthcare professionals and others to make sure that the care they provide is of the best possible quality. 300 323 0140
NHS Choices: Packed full of information on dementia and other conditions.
DemTalk: is an online toolkit for people living with and caring for people with dementia. It offers free advise and information for ways in which you can make better communication. Great help for all dementia groups.
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