‘I knew I had Alzheimer’s – so why did I have to wait a year to be diagnosed?’
Lockdowns have left tens of thousands waiting to learn if they have dementia, and in desperate need of support. Charlotte Lytton speaks to some of those affected
It was a year ago this week that 52-year-old Tim Hough sat in front of a black screen on his computer to learn, via a consultant with malfunctioning video technology, that he had Alzheimer’s disease. By then, he had spent a year fighting for a medical explanation as to why he kept missing the road signs he knew well, and had resorted to plastering Post-it notes all over his bathroom and kitchen and dashboard to keep him on track.
A few tests, and a misdiagnosis of depression, were all he had been offered amid the lockdowns of 2020. Hearing he did indeed have Alzheimer’s was not a shock but was a “terrible” moment, he remembers of the “traumatic” appointment mired in connectivity issues. “It was awful,” says Tim, who previously worked as a contracts manager. “I remember just saying, ‘why me’?”
Yet having received a diagnosis Tim is, comparatively, one of the lucky ones. Some 30,000 people may have dementia without knowing as a result of lockdowns and facility closures, according to figures from the Alzheimer’s Society, which the Telegraph is supporting as part of this year’s Christmas Charity Appeal. Since hospitals and GP surgeries began shutting their doors early last year to concentrate on those with the virus, the numbers of patients with dementia who were diagnosed dropped from 67.6 per cent to 63.2 per cent between February and July 2020. Tens of thousands have missed out on being diagnosed, and being given treatment to slow the degenerative disease.
Alzheimer’s is a form of dementia, accounting for 60-80 per cent of cases. It is thought to be caused by an abnormal build-up of proteins – amyloid and tau – which trigger complex changes to brain cells, affecting how they signal to each other. While the cause of the disease is still unknown, age is the most common risk factor, with most Alzheimer’s patients aged 65 and older; the risk doubles every five years after that point. Around one in 20 of the UK’S 850,000 patients with the disease are younger, like Tim; disorientation, confusion and trouble with speech and mobility are among the warning signs, though these appear long after the cell damage has begun.
Alzheimer’s progressively robs people of the basic parts of themselves – speaking, memory, movement – causing damage that cannot be revoked. A timely diagnosis is vital, allowing patients to begin medication which can delay the advancement of symptoms, make lifestyle changes and consider future arrangements.
Yet “during the pandemic, particularly at the start, referrals to specialist services such as memory clinics has been difficult – in some cases, not possible at all”, says Professor Martin Marshall, chair of the Royal College of GPS. “This will have certainly impacted the number of patients being diagnosed.” An added barrier to receiving a clinical diagnosis since last March has been those who have spotted warning signs not coming forward for “fear of catching Covid-19 or not wanting to burden the NHS,” he says.
Patients with dementia account for one in four deaths from the virus, “while the lockdowns have seen people go downhill terrifyingly quickly”, says Fiona Carragher, director of research and influencing at the Alzheimer’s Society. The treatment backlogs “are now painfully adding to the distress for people with dementia and their families”, she says.
As Tim searched for medical help, several of the professionals he saw put his symptoms down to anxiety and depression, which he didn’t have.
“The real heads up was that he never responded to any of the medication,” Kate, his partner, says. “No one seemed to listen to us, they just wanted to tick boxes and move us along.”
Tim’s GP eventually referred him to the memory service but their local clinic in Staffordshire was disbanded during the first wave of the pandemic. When Covid struck, the majority of non-emergency services and appointments were put on hold, often being offered virtually instead, or in healthcare settings where workers wore PPE (both of which can be disorientating for those with Alzheimer’s).
Anita Roberts, 63, had been struggling with her memory for a few months when she fell at home last March, resulting in admission to hospital. Over the course of her eight-week stay there, her condition “worsened and worsened”, her daughter, Phoebe, says. Doctors said she needed an MRI scan to check for possible dementia, yet after two months without one – the appointment repeatedly made and cancelled due to Covid – Anita was moved to a care home; “just for respite”, the family was told, to free up hospital beds. The “couple of weeks” are yet to cease, 18 months on. And still, though “a shadow of her former self ”, unable to do things for herself or sometimes even recognise the daughter she used to meet every day for lunch, there has been no concrete diagnosis. The MRI scan ordered last March took place this February, with a conclusion of “suspected Alzheimer’s or suspected frontal lobe dementia – it’s one or the other”. No further tests nor treatment have been proposed. She will be in full-time care for the rest of her life.
“I miss my mum more than anything in this world,” Phoebe, 26, says of the delays that have left Anita, previously “the life and soul of the party”, a “completely different person”. When she was first moved to a home, where Phoebe was only able to wave through a window and not visit, due to Covid precautions, “she wasn’t that bad; you could still speak to her and have conversations… She could have been looked after at home. Now, she barely remembers my name.” Another year together would have made all the difference, Phoebe thinks. Now, Anita has been moved to a different facility nearly an hour away, and two new Covid cases there mean a 28-day lockdown is about to begin.
Phoebe wrote a blog detailing their harrowing story for the Alzheimer’s Society, the helpline and support services of which have been inundated with inquiries since the pandemic began. She was shocked by the reams of messages she received from people whose parents had been similarly denied treatment since last March.
The health system’s laser focus on Covid may also have led to rushed diagnoses, some feel. After five months of appointments, hearing his diagnosis of Alzheimer’s last November came as a relief to David, 68: “Great, I can get on with my life,” he recalls thinking. But over the course of the following 12 months, during which time he had one memory test and has only been able to speak with a consultant once, he has been told he does not have the disease at all, but mild cognitive impairment.
“They jumped to a conclusion without following it through,” David says, a result of the stilted services on offer while the virus raged. “It was a bit of a get-out clause … because of the pandemic, they weren’t prepared to do other tests.”
Still, this has left him yet to reach a conclusion, and thus the correct treatment – and needing to tell his
‘I was diagnosed on a video call – not the way you’d want to hear. We just cried’
daughters that he in fact doesn’t have Alzheimer’s.
For those who do receive treatment, the pandemic has affected what that looks like, too. Remote diagnoses of this magnitude, particularly given the typical age of those affected by the disease, who may be less au fait with video technology, can compound the anguish. “It wasn’t delivered like you’d want it to [be],” Tim says of his jarring call. “We just cried.”
Prof Marshall says that the backlog of cases has been made worse by the fact that access to memory clinics – a vital tool for carrying out diagnostic tests and providing treatment plans, which was already a problem pre-pandemic – is still difficult. With no proven cure for Alzheimer’s, providing support for disease management is crucial; some clinics currently have waiting lists stretching into the hundreds, with many waiting for a year or more without an appointment.
Money donated through the Telegraph’s appeal will help to fund crucial research and support for those battling the illness, with the charity’s support service providing “a lifeline” for those left in the dark about their symptoms, says Carragher.
Every moment without diagnosis or treatment is a missed opportunity that cannot be regained. Phoebe describes her attempts to get help for Anita as “extremely exhausting, and heartbreaking”. The pandemic, she says, has “ripped our family apart”.
Alzheimer’s Society is one of four charities supported by this year’s Telegraph Christmas Charity Appeal. The others are Dogs Trust, Maggie’s and the Duke of Edinburgh’s Award. To donate, visit telegraph.co. uk/2021appeal or call 0151 284 1927