‘My wife was diagnosed with Alzheimer’s at 52 and had no clue our daughter died of cancer before she passed away’

A man whose late wife was diagnosed with Alzheimer’s at 52, meaning she had “no clue” that their daughter had died of breast cancer before she passed away, has said more needs to be done to support families who care for loved ones with young-onset dementia.

Clive Downing, 61, who lives in Sheffield and works for the city council, said he was shocked when his “lovely, caring, and glamorous” wife Jayne was diagnosed with Alzheimer’s disease – a brain disease that erodes memory and thinking skills – at 52 in 2015.

“Before her diagnosis, she was a lovely, caring wife, mother and grandmother, but as time went on, bit by bit, Alzheimer’s just eats away at you,” Clive told PA Real Life.

Over time, Jayne lost her mobility, speech, and became doubly incontinent, meaning she required care nearly 24 hours a day. She was eventually moved to a care home and then a second one before she died while Clive held her hand on June 30 2023, aged 59.

Before her death, Jayne “didn’t have a clue” that their daughter Faye, a 29-year-old mother of two, had died of breast cancer on August 20 2022, because her Alzheimer’s was “so advanced”.

“She didn’t understand at all, but hopefully, deep down, she did know,” Clive added.

He has run several marathons, with the 2023 TCS London Marathon his most recent, raising more than £25,000 for the Alzheimer’s Society charity.

Clive said: “Jayne was a lovely wife, always glammed up, never a hair out of place.

“She still had a good sense of humour, a lovely smile, a lovely giggle, but she was in denial that she had Alzheimer’s.

“We just supported her the best we could, but there is not enough support for people with young-onset dementia.

In young-onset dementia the disease develops before the patient is 65, and more than 70,800 people in the UK are living with the condition, the Alzheimer’s Society says.

While Alzheimer’s is the most common form dementia, Clive said he was “shocked” when Jayne was diagnosed at 52 because he “just thought older people got it”.

“I thought, ‘well, surely there’s a tablet or there must be some treatment?’ But I had very limited knowledge on it at the time,” Clive explained.

Initially, Jayne continued doing the activities she enjoyed, such as cooking, looking after the house, and gardening, but gradually started forgetting how to complete tasks such as using household appliances, making food and drinks, and driving.

Clive and their daughters, Hannah, 37, a teaching assistant, and Faye, 29, a support worker, worked together to look after Jayne but could not do it all alone.

Two carers visited the family in Sheffield but as time went on, Clive realised he could no longer look after Jayne at home.

“It was all getting too much so we asked for a little bit of respite, and it deteriorated from there – she became doubly incontinent, her speech went, her mobility went, everything.”

While Clive was caring for Jayne at home, their daughter Faye was undergoing breast cancer treatment after being diagnosed in 2020.

He said: “It was awful and I just thought, ‘what’s happening to us? I can’t take it anymore’.

“I thought my world had ended; I felt broken.”

About a month later, Jayne was taken to a care home before being moved to Herries Lodge in Sheffield in January the following year, where she received “amazing” care.

He said he “held her hand until she went”, as he had done when Faye died.

“I used to go and see her every day, and I used to say, ‘Do you love me?’,” Clive said.

“I wouldn’t give up until she said, ‘yes’, and I got a smile from her; and Hannah and I would hold her hand tightly so she knew we were there.

The pressures of working 40 hours a week and unexpectedly becoming a carer for Jayne led Clive to join a local running club, Steel City Striders, which he said was “the best decision ever made”.

He said running was his “saviour” and, through various fundraising challenges over the years, including marathons and golf days with Hillsborough Golf Club, he has raised more than £25,000 for the Alzheimer’s Society, along with more than £3,000 for St Luke’s Hospice Sheffield, where Faye received care.

“I just want to get more help for people with young-onset dementia, and more support for families and carers,” he added.

“Without Hannah’s help and support, I’d be lost; she’s my go-to, my rock, and she does everything for me.

“But when you’ve been through what we’ve been through, trust me when I say there is not enough support for people with young-onset Alzheimer’s.”

You can visit Clive’s fundraising page at justgiving.com/fundraising/clive-downing

To find out more about the Alzheimer’s Society and its Memory Walk, visit alzheimers.org.uk/memorywalk