The first suspicion that Icelandic boss Richard Walker had during a visit to Poland was that his beloved mother Ranny was not well.
Richard, then 27 years old and a newly qualified surveyor, was working in Warsaw and his friendly, energetic mother, with her ‘naughty’ sense of humor and ‘naughty smile’, had come to visit.
“She was always so interested in life and curious about new experiences,” recalls 42-year-old Richard, who is the executive chairman of the family business. “I thought she would be doing a lot of sightseeing, but instead she was oddly uninvolved.
“All she cared about was buying a coat she’d seen. She was fixated on it – it was so different from her.’
This was in 2008, when Ranny, as friends and family called Lady (Rhianydd) Walker, was just 62.
Richard Walker graduates from Durham University and celebrates with his beloved mother, Ranny (left)
Richard Walker (right) with the Princess of Wales. He campaigns to raise awareness about a rare form of Alzheimer’s
At the time, Richard attributed her behavior to stress: he would later learn it was a sign of early (or young) Alzheimer’s, a rare form of the disease that affects around 70,000 people in the UK.
Alzheimer’s is the most common form of dementia and is described as having an early onset if diagnosed before age 65. Symptoms of early-onset Alzheimer’s often include problems with problem solving, mood swings, and poor concentration rather than memory loss.
The disease may be hereditary, although this does not seem to have been the case for Ranny, both of whose parents showed no signs of dementia. Regardless, her subsequent diagnosis in 2010, at age 64, was like a bombshell that went off for her close-knit family.
Her husband, the founder of Iceland, Sir Malcolm Walker, Richard and his two older sisters, Alexia and Caroline, had to watch with a broken heart as the Ranny they knew and adored gradually disappeared before their eyes.
She passed away two years ago, on January 29, 2021, with her close family around her. “She suffered so much that it was a relief in the end,” says Richard, now a father of two.
“Mama never got aggressive, but it was like her personality was being eroded.
“The disease has eaten away everything. Going out became annoying for her, so she stayed at home or in the garden.
“In the space of eight years, she progressed to a wheelchair, then to a chair, and finally, over the last few years, she was in bed.
“The reality of the ending is brutal. You’re incontinent, you can’t talk, you can’t feed yourself, you’re bedridden.
“Mom was such a private and proud person. And there was absolutely no dignity.
‘It is important that people understand how difficult it is for the patient and those close to him.’
The Walker family, determined that something good must come out of their family tragedy, has dedicated itself to raising funds and awareness and supporting the Rare Dementia Support Center (Malcom Walker and Richard Walker on Everest in 2011)
Early-onset Alzheimer’s is one of seven rare dementias currently at the center of a campaign by The National Brain Appeal.
The charity is raising money to build the world’s first rare dementia support center in London, to help patients with these lesser-known diseases and their families.
These rare forms are proportionally more common in people under the age of 65 and together account for 15 percent of all cases of dementia.
The other rare types are: frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial frontotemporal dementia, familial Alzheimer’s, and dementia with Lewy bodies.
The state-of-the-art center is part of the Queen Square Institute of Neurology at University College London (UCL) and will become the world’s first center of excellence for the treatment and research of these rare forms of dementia. The aim is to provide tailor-made support to people with hereditary, atypical and early onset dementia.
Tailored help for these younger patients is sorely lacking, as most services are designed for older people.
This is exacerbated if the dementia has atypical features, for example if it mainly affects non-memory skills such as behaviour. The center plans to educate healthcare professionals such as physiotherapists, speech therapists and general practitioners about the special needs of these patients.
A third goal is to provide a dedicated space for pioneering research into rare forms of dementia.
Professor Nick Fox, neurologist and director of the Dementia Research Center at UCL, who treated Ranny Walker, is among the experts who applauds the plans, saying they will provide ‘specialist support to patients who are so needed and so difficult for them ‘. find’.
“Early-onset Alzheimer’s research is particularly important, not only because of the burden it places on those affected and their families, but also because it gives us the opportunity to study only people with Alzheimer’s disease, rather than the many diseases that typically accompany old age,” he told Good Health.
“By focusing on early-onset Alzheimer’s, we can gain insights and help find treatments that will ultimately benefit patients who have all types of the disease.”
The Walker family, determined that something good must come out of their family tragedy, has dedicated itself to raising funds and awareness and supporting the Rare Dementia Support Centre.
They were able to afford round-the-clock care for Ranny, allowing her to stay at home, but they are well aware that this is not the case for many others.
“There was no center for support, advice, or community for someone like Mom,” says Richard. It’s easy to feel alone or unsupported. We urgently need to better understand this terrible disease and do everything we can to support patients and their families.”
The Walkers’ fundraising has received support from the Charitable Foundation of Iceland; together with staff donations it has raised over £5 million for Alzheimer’s Research UK since 2011.
Trying to help Ranny deal with her condition – while coming to terms with it themselves – was hard for everyone.
“There are painful things I can’t ignore,” says Richard.
Her diagnosis, after cognitive tests and brain scans, was devastating. One positive, says Richard, was that an early diagnosis enabled the family to receive expert support from Professor Fox and his team, advising them on how best to help Ranny.
“At first we thought the best way to deal with Mom’s condition was to treat her brain like a muscle and stimulate her by solving crossword puzzles,” says Richard.
He adds: ‘But Professor Fox has shown us that you really don’t want to overburden the person. It can cause them a lot of anxiety. If she forgot something, we didn’t challenge her.
“This is standard advice now, but then many families didn’t understand it.”
An early diagnosis was also helpful for Ranny. “For Mom, the greatest levels of anxiety and disorientation were in the beginning, when she knew something was wrong but couldn’t put her finger on it,” says Richard.
One positive, says Richard, was that an early diagnosis allowed the family to receive expert support from Professor Fox and his team, advising them on how best to help Ranny (pictured with his OBE in March).
Richard aims to raise at least £1 million for The National Brain Appeal by climbing the highest mountain in the world, Mount Everest
“Having a diagnosis and understanding how to cope has greatly improved mom’s quality of life.”
Richard describes his mother as the ‘rock of the family’. His parents met at school and built the business together – with Ranny coming up with the name Iceland and doing ‘everything from cash register work to inventory’.
“In those early days, it was her salary as an English teacher that kept the family afloat,” says Richard. He shared his mother’s love of music – and his last memory of her is of him sitting by her bedside listening to a Welsh male choir. “I saw a tear in her eye. The power of their voices still moved her.’
They also shared a love of mountains and, after months of training, Richard is aiming to raise a minimum of £1 million for The National Brain Appeal from 17 April by climbing the world’s tallest mountain, Mount Everest, with mountaineer Kenton Cool .
Richard recently discussed his upcoming trip with the Princess of Wales, who joked during a visit to one of his shops that it made him look ‘super fit’.
“I know Mom would tell me I’m stupid for going,” he says. “But this is too important. We need to take dementia and its terrible impact on families more seriously.”
To help Richard raise money for the Rare Dementia Support Center please visit: justgiving.com/campaign/coolwalkereverest