Dementia does not only affect elderly people. There are more than 55 million people living with the condition worldwide. Every year, nearly 10 million more develop this neurodegenerative disease.
But almost every one of those with dementia has someone who loves them: someone whose own life will crumble as they are forced to watch their loved one succumb. Someone whose own life will be slowly erased as the condition wipes out a lifetime of shared memories from the brain of their partner, parent or friend, destroying their ability to experience emotions and changing their personalities.
The announcement, then, that a new drug, donanemab, can slow the pace of Alzheimer’s by about a third is a cause for celebration.
But the drug will not help everyone: Alzheimer’s is the most common form of dementia but it only contributes to between 60% and 70% of cases.
Research also suggests patients need to be at an early stage for the highly expensive treatment to be most effective – and diagnosis takes an average of three years in the UK. Those taking the drug must also be willing to risk potentially serious side-effects.
Three people with first-hand experience of Alzheimer’s tell what a cruel and pitiless disease it is and how many human tragedies would be prevented if it eventually became a manageable, even a curable, condition.
Dave Shepherd, Devon
These drugs have come eight years too late for my wife, Catriona. She was diagnosed with early-onset Alzheimer’s in 2014 when she was just 58. She’s in a home now, unable to look after herself or even speak coherently.
These new drugs are still wonderful. I’ve come to terms with what’s happened to my wife, but to think that it might be possible to stop other people going through what we endured makes me very happy – especially as those other people could be my children or my friends. Or me.
Alzheimer’s is a horrible disease. It’s continuous; you watch your loved one slowly getting worse and worse. One of the most awful things is the beginning, when you don’t know that there’s anything wrong. I still carry enormous guilt that I got angry and frustrated when Catriona forgot things, kept asking the same questions or had a blank doing something she’d done thousands of times before. I just thought she wasn’t concentrating and snapped at her. She was already struggling and my reactions must have made things even scarier for her.
Everything changes when your partner has Alzheimer’s. Eventually you become a full-time carer – and that really does mean 24 hours a day. It’s exhausting but there’s no choice. Catriona wasn’t safe to leave for a moment: we couldn’t risk her going into the kitchen or walking up the stairs on her own because she’d lost her sense of balance.
By that point, you can’t go out because they can’t go out. My world became as small as hers – just our four walls. When lockdown happened, a part of me almost welcomed it because no one else was able to go out either and I didn’t feel like such an outsider.
The care home she’s in is wonderful, but in one more year I’ll have run through our savings. I have to hope that the council will continue to pay for her to stay in the same place.
While these drugs sound incredible, unless the process of getting a diagnosis is sped up, people won’t get their full benefit. Getting a diagnosis for Alzheimer’s can take a dreadfully long time: it took me six months to persuade Catriona to go to the hospital for a diagnosis – and then they turned us away, telling us there was nothing wrong.
It took me another six months to persuade Catriona to agree to go to another expert, who finally diagnosed her. If the drugs had been around then, that would have been a year that her brain was being damaged that we couldn’t have got back, no matter how good the drugs were.
Fernando Marrero, Wandsworth
I have a really strong family link to Alzheimer’s – most of my elderly uncles and aunties passed away because of it and I can see my mum coming down with it now too.
These are all educated, intellectual people: one of my uncles spoke three languages. One of them, after he was diagnosed, was terrified. He told me: “I’m scared that I’m not going to be able to recognise anyone.” I could see how much he was suffering in his eyes and he was right: the next week when I went to see him, he was already beginning to not recognise people.
It’s because I’ve seen it close that I’m so terrified of getting it myself. The fear looms over my entire life. It is incredibly stressful.
Pretty much everything I do is designed to reduce the chance of me developing the disease. I live in such a highly structured way that my friends laugh at me. But living like this helps me to not forget things because when I do, it’s just too upsetting and worrying. On the rare occasions when I forget where I’ve put my keys, for example, I’m devastated.
The doctor tells me not to be paranoid but I’m obsessed about keeping my body and my brain active. Even when I’m tired and not enjoying it, I’ll be writing, reading, doing crosswords or sudoku. I speak two languages, exercise, and whenever I eat anything, I make sure it’s something that will be good for my brain.
I subscribe to medical journals and talk to people in my family who are doctors, to see if they can give me any new advice. It’s exhausting to be like this. Sometimes I get to the end of the day and I’m completely drained.
If I could take these new pills and have all this stress and worry removed from my life, it would be amazing. I would be so happy. It would mean I could stop forcing myself to do all this stuff and just do the things I enjoy.
I know it’s not that simple as taking a single pill yet and I know that at the moment, side-effects can be a problem. But the pharmaceutical industry really needs to find a permanent solution because we have to end this ferocious illness.
Having witnessed it first-hand, I can say with certainty that it is the cruelest disease of them all. Watching loved ones’ cognitive senses diminishing day by day is appalling, not only for them – because, at the beginning, they realise that something is not quite right – but also for everyone who loves them.
Jackie Fildes, Chelmsford, founder and chair of otherhalves.org.uk
My husband, John, died of Alzheimer’s three years ago, the day after lockdown ended. He was diagnosed in 2010 – it took us three years to get a diagnosis – and he went into a home for the last 15 months because he started to get aggressive and I could no longer cope.
Loving someone who has Alzheimer’s is torture. The first thing that happens is that they lose any sense of empathy. For me, looking into the eyes of the man I’d shared 50 years with and seeing that he had no empathy for me any more at all was devastating.
The next thing is that your partner of decades forgets your shared history. When that happens, that part of you dies as well. It means that you’re no longer properly known by anyone any more. That’s a very lonely place to be.
John had always been an active man and when he got Alzheimer’s, this became very difficult because he was always trying to escape. I had to put locks on our doors and install fences around the house – even then, he would try to climb over them. He once escaped and walked 10 miles to the next town.
Inside the house, he would follow me around constantly and was always doing something: he would pick up a pair of kitchen scissors and cut a tea towel up into small squares. He would carefully wrap cutlery up and hide it somewhere nonsensical. I was forever finding rotting food stashed in strange places. It made me want to scream.
I had to keep one step ahead of him all the time to try to keep him safe. It was exhausting – my brain was constantly whirling, trying to work out how he could conceivably hurt himself and trying to prevent it.
I had to put a lock on the kitchen door because he wasn’t safe in there: he once put the remote control over the gas flame and tried to scrape the covering off. But keeping him safe meant our home became more and more like a prison, with me trapped inside it too.
I have gone through every emotion from absolute depression and in a hole, to absolute rage and fury.
When I read up about this pill, my reaction was that the hopes of those who care for people with Alzheimer’s needed to be managed. We’re so desperate to stop the nightmare of what’s happening to our loved ones that we’re incredibly vulnerable. Giving false hope to people who are completely desperate for hope means they are going to be utterly devastated if it turns out that the pill won’t help their situation.
The truth is that there are more than 100 different forms of dementia. Out of the 850,000 people with dementia in the UK, about 500,000 have Alzheimer’s. Only some of those can be treated with this pill – and there are risks. That leaves a lot of people no better off.
This pill is exciting and a step forward but you have to be very careful playing with the hopes of people like I was, so desperate for things to be different that we’ll cling on to anything that might conceivably help.
For those experiencing issues around Alzheimer’s, the Alzheimer’s Society can help.
