Real stories

Parenting and family life after being diagnosed with Alzheimer’s at 50

‘I’m proof that dementia can surprise anyone,’ says Elaine in Surrey, aged 52. When she developed symptoms in 2021, they were initially put down to stress and the menopause. 

Mum to two daughters, now 12 and 15, Elaine had a busy job – her background is in engineering and leadership training. 

She loved socialising and kept fit by running long-distance and playing touch rugby, as well as coaching her daughter’s team. But then, she says, ‘things started to go a bit wrong’. 

I was struggling with things like my concentration, basic maths and finding the right words. 

But more than that, I was a different person. I lost my enthusiasm and confidence. I did not feel like me and I dropped out physical activities.

She experienced eye ulcers, migraines and balance problems. 

‘My doctor would treat one thing and then something else would happen. They thought my migraines were menopause related because I was also becoming forgetful and a bit teary.’ 

Shock diagnosis 

Elaine was getting tired of medical appointments that didn’t provide definite answers, but her family encouraged her to keep going. 

‘There are lots of nurses in my family. They’re the ones who pushed me to get answers.’ 

It was a physiotherapist who first said her symptoms could be caused by a problem in her brain. 

‘I’d started seeing him because I couldn’t feel my shoulder and right hand. And during one appointment, I started slurring. He told me I needed to see a neurologist quickly.’ 

Elaine was referred for a lumbar puncture. The needle hit a bunch of nerves on first attempt, leaving her in bed for 10 days over her 50th birthday. 

A few months later, in which time her symptoms worsened, a second procedure found the proteins that are associated with Alzheimer’s disease. 

She describes her diagnosis as a thunderbolt. 

A huge shock. It was confusing because of my age – I was fit with no family history. I didn’t know anything about dementia.

Elaine is grateful for having such an inspirational neurologist, Dr Kuven Moodley at St George’s Hospital in south London, who’s still with her today. 

‘He has been so good. He has worked hard to help get my medication properly balanced and given me the support that’s keeping my family together. We get on really well. 

‘I think he sees me as an interesting case, a big puzzle. I don’t fit the profile of people with dementia he usually treats.’

‘Evolving situation’ 

Elaine praises the medical care she received after her diagnosis. But it took a while to find the right combination of drugs to stabilise her symptoms. 

During a trip to see her partner Bryan’s sister in the US, she experienced a sudden episode of delirium, and she was hospitalised for four months. 

Finding ways through the challenges of life, which Bryan calls an ‘evolving situation’, has also taken time. 

‘I wasn’t able to do much for a long time, I was really struggling,’ admits Elaine. 

It was hard, and still is, to give up work, not be independent and to have to stop driving.

Carers started coming in to help Elaine four times a day, which she says was thanks to Dr Moodley’s help. 

‘Being outdoors and getting fresh air are important to me. I love walking. I miss the adrenaline of sport, but I try to get in as many steps as I can every day.’ 

Elaine also walks her dog Bella, a spaniel-pug cross, every day. A dog walker goes with them to make sure they don’t get lost.

Smaller world 

Adapting to a much smaller world has been challenging for Elaine. It’s particularly upsetting that lots of her friendships have waned because she’s not able to go out and socialise. 

‘I’m trying to be positive, but I have dark days,’ she says. ‘But that’s life – there are good and bad days for everyone, aren’t there?’ 

Her new focus is trying to meet more people like her. 

‘I would like to meet more people, but the groups recommended are for a different generation. 

I have more in common with 20-somethings than people in their 60s, who have grown-up children and grandkids.

‘My personality is much younger and that would be the case even if I didn’t have dementia. That’s just who I am.’ 

She’s recently started attending the Young People with Dementia Group in Surrey. There, she’s been enjoying activities such as bowling, mini-golf and visits to a community garden. 

‘The team is kind and well trained – we always have good banter.’ 

Specialist support 

There’s no sugar-coating how hard it is raising two young daughters. She and Bryan co-parent them with her former husband on a week-on, week-off basis. 

‘My daughters are too young to understand and cope with something that usually happens when parents are older. I worry about the future and worry whether I’ll see them grow into adults.’ 

What makes it even harder is the lack of professional support available for the children of people with dementia, something that Elaine is passionate about changing. 

My girls are very strong but they need specialist support. They have a counsellor through school, but they’re not trained in this kind of disease. 

‘They often struggle to deal with the fact that Mum gets tired and confused and that I can’t as easily cope with stress and emotional situations like I once used to. 

‘They could join a young carers’ group, but its meetings are online and they need face-to-face support.’ 

Family life 

Elaine wants to enjoy fun times with her partner, daughters and extended family, but she’s learning to accept her limits. 

‘I have sensitivities and get easily stressed out. They love going to London to shop or see a show. It’s too busy for me, but I still go because I’m stubborn and I don’t want them to miss out. 

‘We’ve been doing activities where I can take part as much as possible, such as painting, pottery, walking and they love shopping. 

‘We go away for short breaks when we can but try to stay close to home. That’s because big changes in things like the time zone or temperature can bring about delirium, which is awful if you have Alzheimer’s.’ 

Her daughters have recently been making scrapbooks of all the things they do together, so they can look back and reminisce. 

They’ve also been teaching themselves to cook. Elaine is particularly proud of them trying to do their best with things that Mummy used to always do for them. 

Raising awareness 

Elaine wants to raise awareness about the need for more support for young people who have parents with dementia. She also wants greater understanding among healthcare professionals about young-onset dementia. 

‘I’ve had amazing support since my diagnosis from my neurologist, specialist nurses and occupational therapists. Getting on that pathway as early as possible is super-important. 

‘But my diagnosis was a long and frustrating process. I had to be really persistent. 

‘After all my trips to see my GP, it was my physiotherapist who first thought I had a neurological condition because he had some knowledge and experience. I think that proves that a wider range of healthcare professionals need to be educated about dementia.’ 

Elaine would also like to see more opportunities for younger people with dementia to take part in medical trials, and to be visible in the media. 

I’m glad there is beginning to be more help for younger people with dementia and I’m grateful for all the help I’m receiving. But there’s so much that can be done to also support children.