The family cursed by Alzheimer’s: ‘It’s not just losing your parent, it’s seeing what losing yourself will be like’

Sophie Leggett watched dementia claim her mother and aunt while they were in their 40s. Here she charts the agony of deciding whether or not to learn if she – and her teenage daughter – are destined for the same fate.

Sophie Leggett Genetic Alzheimer's
Sophie (right) aged 16 alongside her aunt heather (already afflicted with Alzheimer’s), grandmother Joan and mum Gillian, who would also get the disease early.

There’s a list of letters I want to write for the future. One is for my 19-year-old daughter Despina, to be read on her wedding day if she ever marries. My own mum wasn’t at my wedding – she was in a care home with Alzheimer’s – and I’ve always wondered what she would have said to me if she could have been there. I want Despina to have my words in a letter, in case the same happens to me.

Another is for my husband Chris, to tell him that it’s OK to love someone else after I’ve died. He hates me talking about it because, as far as he’s concerned, he’ll never meet anyone else, but I don’t want that for him. I also want to put in writing that I don’t want him to become my full-time carer. I want Chris to have a life.

A third letter is for the genetic counsellor who takes Despina through the testing process, should she decide to be tested for the Alzheimer’s mutation that I carry – the mutation that runs through our family, leading us to develop the disease in middle age. I want to say, ‘This is my baby. She may be brave, she may think she can handle all this, but you need to talk it through so carefully. She is not just an NHS number. You are talking to the human being that I made. Don’t screw it up.’

I was in my late teens when we felt the first signs of Alzheimer’s in our family. Until then, I’d had a fun, carefree childhood, growing up by the seaside in Great Yarmouth where my parents owned record shops. My mum loved dogs, food, wine, holidays, music – Bruce Springsteen was her thing – and she was very family-oriented, too. One of my most precious memories is whenever I was ill, she’d buy me new pyjamas and make me hot Ribena.

My mum’s elder sister, Heather, was the first to get symptoms. She was in her early 40s, having problems with her memory and experiencing anxiety. Getting nowhere with her doctors, she started looking into our family history for answers. Her dad – my maternal grandfather – had left the family when they were young, so they never knew him. But they did know he’d been in the RAF, and used their records to trace him. My Auntie Heather discovered that he’d recently died, and his death certificate listed ‘pre-senile dementia’ as a cause.

That’s the term that was used then – there was no mention of Alzheimer’s. My auntie lived miles away in London and her children, my four cousins, were much younger than me. I think my mum struggled with her sister being ill. She wasn’t able to face it and tried to avoid going down to see her – but then, by her 40s, mum also began having problems with anxiety and short-term memory loss. For a decade, she was going to the doctor but, again, nobody listened. She was signed off work but got no real diagnosis or proper support.

Sophie with her daughter Despina. Image: Charlotte Murphy Photography.

At that stage, I was enjoying my 20s. I worked in Crete for two years – Despina was my souvenir! – and later met and married Chris. I was angry with mum for not doing the things a mother should do when her daughter is pregnant or has a tiny baby. She didn’t stay in touch very well. We had to go to visit her; she never came to us. On Despina’s second birthday, Mum bought her an outfit for a five-year-old.

Looking back, I feel very emotional that I was so cross. But I was in denial. My Auntie Heather was now in the late stage of the disease. My cousins had been getting involved in Alzheimer’s research and discovered that the type affecting our mothers was called familial Alzheimer’s disease (FAD), and it was genetic – each family member had a 50 per cent chance of inheriting the mutation. When they told me, I couldn’t cope with thinking about it. I’d just brought this new human being into the world.

My mum was finally diagnosed with Alzheimer’s at the age of 50 after first being sectioned – by then, she was wandering out of the house at night. She went straight from hospital to a care home, which I hated visiting. My sister was amazing; she’d feed Mum and help her to the toilet, while I just sat and cried. All I could think was that I was looking at my own future. And that one day my daughter might be sitting watching me in that bed.

It’s horrible for anybody to have a parent with Alzheimer’s, but when it’s genetic, it’s not just about losing your parent; it’s seeing what losing yourself is going to be like, and knowing exactly how that will feel for the people you love. I felt huge guilt because I wasn’t being the daughter I should be.

Everything changed when mum died in January 2012. She’d lived for seven years in a care home and for four of those she was bed-bound. For the last ten days of her life, my sister  and I lived in her room. I was finally there for her, doing all the things I wish I’d done earlier.

The Blankets Sophie has knitted, while she still can, For her future grandchildren. Image: Charlotte Murphy Photography

The month after she died, I went to my first FAD support meeting in London with my cousins. There were about 40 people there who either knew for certain they’d inherited the mutation or were at risk. They voiced everything I’d felt but been unable to say: fear, guilt, anger. It was life-changing. The more involved I became, the more I learned. I became an Alzheimer’s research geek and got involved in a worldwide drug trial for people at risk. I didn’t expect it to save me but I’m hoping there will be something learned for the next generation. 

For years, although there was a test available, I didn’t want to know whether I carried the mutation. I thought that if I tested positive, I might kill myself or never get out of bed again. I needed the 50 per cent hope.

Chris didn’t want me to get tested either. He was convinced I didn’t have it – in fact, lots of the family felt the same. One cousin had granted me power of attorney for that reason. The disease has taken more than half of us (several family members from my generation are living with symptoms now), so there was a feeling that one of us had to test negative. People thought it would be me. 

By 2017, now in my 40s, I wanted to know for certain. Despina was growing up, taking A-levels, and there were things I wanted to do with my life. Chris and I had a dream of selling our house and living on a canal boat, but living on water – getting on- and offboard when you have Alzheimer’s – isn’t the best idea. I also wanted a career change (I was a Slimming World consultant), but what if I began retraining then discovered I couldn’t learn any more?

Though really scared, I was ready to know. I had two sessions with a genetic counsellor, one alone and one with Chris. They wanted to be sure that I fully understood the implications of finding out. You can never unhear that information. Two tubes of blood were drawn then, on 11 May 2018, Chris and I went back for the results.

A consultant and a genetics nurse were there. The consultant told me that I had tested positive. Immediately, I wanted to get out of the room. I cried and kept saying sorry to Chris, because the future was going to be so much worse for him. He told me to stop apologising. We stayed in a London hotel, and I woke up crying in the night. I cried all the way home on the train to Lowestoft, too. I knew I’d have to tell our daughter when we got back.

Despina was almost 18. I tried to be as positive as I could, and said that I was exactly the same person I’d been the day before. This disease would still have come for me – the only difference was that we now had the knowledge. She has since told me that she wants to get tested too, maybe after university when she’s more settled. I tried to say the right things – ‘Talk to people your own age in the same situation’, ‘I’m here if you want me’ – then went upstairs and sobbed my heart out. How amazing it would be if she doesn’t have it. I definitely want to be alive to hear it. But if she does? I feel I’m the only person who would have the right words to say to her.

Sophie today, aged 43. Photo by Charlotte Murphy Photography.

Since getting the results, I’m monitoring myself for symptoms but I’m probably less stressed about it compared to when I was living with the risk hanging over me. In the past, if I forgot anything, I’d think, ‘Oh my God, does this mean I have it?’ Now I know I do, so I don’t need to continually ask that question. My hope is that as problems begin to arise, I can think, ‘That’s an Alzheimer’s thing. What small change might make that aspect of life easier?’ Everyone is watching me like a hawk, but we genuinely don’t think there are any signs yet. It’s ironic because Chris’s memory is ten times worse than mine!

My focus now is looking after myself, eating and sleeping really well and getting plenty of exercise. I run a lot. There’s mounting evidence that this can make a difference and delay the start of symptoms. I left my Slimming World job; I loved it but it was all-consuming and I wanted to remove as much stress as possible. I’m now an assistant at Argos.

A big priority for me is making memories for the people who matter. They’ll need good ones to balance out the horrible things to come. We’ve had weekends away, a birthday trip to Budapest, in the summer we went to Wimbledon before I forget what tennis is. It really bothers me that any future grandchildren might not get to know the ‘real me’ so I’ve knitted them baby blankets. I hope they’ll feel my love every time they snuggle into them.

I’m really lucky that I have an amazing family. We talk about the Alzheimer’s openly – there’s no need for big, serious conversations. We even joke about it. When I asked Chris if I should have a tummy tuck, he told me there was no point: eventually I won’t remember where my tummy is! It doesn’t mean that we’re in denial. You can laugh as well as cry about it – and then get on with doing things sooner rather than later.

There is so much misunderstanding around Alzheimer’s. People think that it’s just something inevitable that happens when you’re old. But it’s a disease, and like any other disease, one day, with more research and understanding, it could be prevented or cured. One in three babies born today will get some form of dementia in their lifetime. If we raise funds and awareness about Alzheimer’s, the way women have for breast cancer, then breakthroughs can be made – and life for our children could be very different.

Alzheimer’s – What you need to know

  • Alzheimer’s disease accounts for two-thirds of all dementia cases and affects more than 600,000 people in the UK. About 60 per cent of people living with the most common forms of Alzheimer’s are women.
  • Directly inherited familial Alzheimer’s disease (FAD) accounts for about one per cent of dementia cases and affects as many men as women.
  • Alzheimer’s is believed to be linked to the build-up of two proteins, amyloid and tau, in the brain. As the disease progresses, more and more nerve cells become damaged, causing loss of memory and communication skills, along with a decline in ability to think and reason clearly.
  • Genetic testing is not available on the NHS for most cases of Alzheimer’s as it’s likely to be caused by a combination of risk factors, but for those with a strong family history – where relatives have developed the condition in their 30s, 40s and 50s – the NHS offers predictive gene testing for over-18s. A positive test result means an individual carries the gene and will go on to develop the disease.
  • Though we can’t change our genetic inheritance, there’s mounting evidence that good cardiovascular (heart) health can reduce your risk – keeping blood pressure and cholesterol under control, maintaining an active lifestyle and healthy weight, not smoking and not drinking more than 14 units of alcohol a week.
  • If someone you know has been recently diagnosed with Alzheimer’s, talk to them directly, ask how they feel, how you can help and what they want. Don’t ask their partner or their children. The more you understand, the longer you can stay on board to support them.
  • Sophie is supporting alzheimer’s research uk’s #sharetheorange campaign highlighting that dementia is caused by physical diseases which can be tackled through research. For more information, including organisations that support people affected by dementia, go to alzheimersresearchuk.org

As told to Anna Moore