In January 2024, Clare's face appeared on bus stops and billboards across the United Kingdom. She was not a celebrity, nor a politician, nor a model. She was a daughter - one of an estimated 982,000 people in the UK living alongside someone with dementia. The campaign, titled "We live with dementia," was the largest brand awareness initiative ever mounted by Dementia UK, the charity behind the Admiral Nurse specialist service. Its premise was disarmingly simple: dementia does not just happen to the person diagnosed. It happens to everyone around them.
For Clare, the decision to participate was born of desperation as much as conviction. "No family should have to go through dementia alone," she told Dementia UK. Behind those words lay years of escalating crisis - a mother slipping further from recognition, a family navigating a care system with gaping holes, and the quiet, corrosive guilt that accompanies the decision to place a parent in a home. In April 2024, just weeks after the campaign launched, Clare's mother suffered a series of seizures. She died on 28 April, with Clare, her father, and her brother at her side. The campaign that had introduced Clare to the nation as a public face of dementia caregiving had, in the cruelest coincidence, been running for barely three months.
The Campaign That Gave a Private Pain a Public Voice
The "We live with dementia" campaign, conceptualised by creative agency Lark, evolved from its predecessor, "I live with dementia," which launched in 2022. The 2024 phase broadened the lens to shared experience, featuring five real-life carers - Christine, Clare, Ricky, Barrington, and specialist dementia nurse Sarah - each speaking directly to camera. Their words were deliberately cut mid-sentence in the hero film, so that one person's story flowed into the next's, creating what Lark director Paul Allen described as "unique stories forming a single narrative."
Clare's participation was rooted in a specific grievance: the absence of timely, specialist support. By the time her family encountered Dementia UK, her mother was already in the advanced stages of the illness. "I've called the dementia specialist Admiral Nurses on the Helpline many times since, when things have felt really desperate," Clare said. The nurses helped her navigate hospital admissions, transition her mother into a care home, and apply for funding for care fees. "They have given me that extra bit of support to keep going during this devastating illness."
The campaign's visibility was substantial, deployed across digital out-of-home advertising, poster sites, and Dementia UK's owned channels. Shortly after launch, Clare was recognised by friends and family who had spotted her at bus stops. The "Living with Dementia" guide, a companion resource, had been downloaded more than 39,000 times in 2023 alone.
A Nation Losing Its Memory
The statistics underpinning Clare's story are staggering in their trajectory. According to Alzheimer's Society, approximately one million people in the UK currently live with a form of dementia. This figure is projected to reach 1.4 million by 2040, driven by population growth and an ageing demographic. One in three people born today will develop dementia in their lifetime. The government's own dementia surveillance data, updated in March 2025, recorded 483,000 people aged 65 and over with a formal dementia diagnosis in England - a record high - with the diagnosed prevalence rate standing at 4.2% of the primary care registered population.
The financial burden is equally alarming. Alzheimer's Society estimates the total cost at £42.5 billion annually - forecast to reach £90 billion by 2040 - with 63% of that cost borne not by the state but by people with dementia and their families. The per-person cost of severe dementia reaches £80,500 per year. NHS England data shows that 169,500 people with a dementia diagnosis reside in care homes, yet Alzheimer's Society estimates that roughly 70% of all older-age residential care residents have dementia or severe memory problems - a gap suggesting far higher unrecorded prevalence within the sector.
The Hidden Crisis of Britain's Dementia Carers
For every person diagnosed with dementia, unpaid carers whose lives are reorganised - often involuntarily - around the demands of the condition. The Dementia Carers Count 2025 Survey found that three in four had no choice but to care, and four in five had reached crisis point at least once. Over half were providing care 24 hours a day, seven days a week. The psychological toll is severe: 39% considered themselves to have a mental health condition such as depression or anxiety, while 77% reported feeling lonely due to their caring responsibilities. A 2025 Alzheimer's Society survey of 3,487 respondents found that 70% of unpaid carers reported their mental or physical health had been negatively affected, and 46% did not know who to contact for social care support.
Clare's own account reflects this isolation with painful clarity. "No one understands how traumatic it is caring for someone living with dementia unless you've experienced it," she told Dementia UK. "You're losing the person you love along the way. You can't explain it to the outside world." This sentiment echoes across the testimonies of carers nationwide. The concept of "ambiguous loss" - grieving someone who is still physically present but cognitively absent - has become a recognised psychological framework for understanding the particular anguish of dementia caregiving, a phenomenon explored in depth in The Architecture of Erasure: Still Alice and the Anatomy of an Unravelling Mind.
The Guilt That Haunts the Care Home Decision
One of the most psychologically destructive dimensions of dementia caregiving is the guilt that accompanies the transition from home care to residential care. Clare carried this burden for years. "I always felt guilty for the four years Mam was in care," she said. "When unable to visit, I'd constantly worry about how she was faring without one of us there, despite the brilliant care she was given."
This experience is far from anomalous. A second Clare - a woman in Lanarkshire whose husband Tom was diagnosed with dementia - described an identical trajectory to Sanctuary Care in February 2025. Tom, now 87, had become increasingly agitated, leaving the house at night searching for car keys she had hidden. "I just couldn't cope, and I was getting virtually no sleep - it was impossible to maintain," she said. In July 2024, she moved Tom to Abercorn House Care Home. She visits every day, sitting with him to chat and reminisce.
Ann, who attended St Clare Hospice's Dementia Carers' Café with her partner Peter while he cared for his stepfather Bill, described the psychological shift: "All the plans you had for your old age go out the window. The life you imagined is gone. And that can be very hard to accept."
Admiral Nurses: The Specialist Support That Changes Everything
The Admiral Nurse service, funded by Dementia UK, represents one of the few structured interventions available to families navigating dementia. Admiral Nurses are specialist dementia nurses who work across hospitals, care homes, and community settings, providing clinical guidance and emotional support. As of 2024, the Additional Roles Reimbursement Scheme allows Enhanced Nurses, including Admiral Nurses, to be funded through primary care networks - a structural development that could significantly expand access.
For Clare, the impact was transformative. The Helpline connected her with specialists who understood the granular challenges of her mother's care - from hospital admission protocols to the mechanics of applying for care fee funding. Claire Baird, a community modern matron who juggles full-time NHS work with caring for her mother Katie, diagnosed with Alzheimer's in 2023, described the particular cruelty of watching a parent decline: "She has gone from a warrior of a woman who walked 20k steps a day, to someone who can't get out of bed and needs 24-hour care. It's heartbreaking and so tough."
Yet the structural gap remains vast. The 2025 Dementia Carers Count survey found that one in two dementia carers received no support at all. Less than half had received a Carer's Assessment, and of those who had, less than half received any follow-up.
Grief Without End: The Double Loss of Dementia
Clare's mother took her last breath at lunchtime on Sunday 28 April 2024. "Her final days were emotional, peaceful, musical, prayerful as well as being incredibly tough," Clare recalled. "Her priest gave her the last rites, we prayed, we spoke to her, comforted her, played lots of music and took turns to have short rest breaks." After she died, care home staff queued to pay their respects, many in tears. "They had treated Mam like she was their own Mother - I will be forever grateful to those carers and staff for everything they did for her."
The aftermath brought its own disorientation. "I felt very lost in those early weeks after Mam died," Clare said. "I took some time off work. The pain of losing her felt incredibly final. Yes we are relieved she isn't suffering, but we also just miss her incredibly." This dual grief - relief intertwined with devastation - is characteristic of dementia bereavement. Carers frequently describe mourning the person long before death, then confronting a second, distinct loss when the body finally follows.
Claire Baird articulated this with particular precision: "That's because I'm losing mam to it, and she's still here. The hardest bit is that I'm going to grieve twice. I'm grieving now, and when she goes, I'll be grieving again." The phenomenon has significant implications for mental health support provision, yet access to bereavement counselling specifically tailored to dementia carers remains inconsistent across the UK.
Clare has refused to let the experience dissolve into private grief. "I don't feel like our dementia journey has ended," she said. "I do think I can use Mam's illness, journey and our experience to help others. I'm certain that's what she would have wanted." The isolation that characterises dementia caregiving - the sense that no one outside can comprehend the daily reality - is, she suggests, both the condition's most insidious weapon and its most addressable failing. The evidence suggests she is right. As the UK's dementia population climbs toward 1.4 million, the question is not whether families like Clare's will continue to bear this burden alone, but whether the systems designed to support them will finally match the scale of the crisis. The modern epidemic of loneliness, which deepens with each passing year, is not an abstract social trend - for the nation's dementia carers, it is the texture of daily life.
