Iceland boss Richard Walker is raising awareness about how devastating dementia is

The first inkling Iceland boss Richard Walker had that all was not well with his beloved mother Ranny was during a visit to Poland.

Richard, then aged 27 and a newly qualified chartered surveyor, was working in Warsaw and his gentle, energetic mother, with her ‘mischievous’ sense of humour and ‘impish smile’, had come to visit.

‘She’d always been so interested in life and curious about new experiences,’ recalls 42-year-old Richard, who is executive chairman of the family business. ‘I thought she’d do lots of sightseeing but instead she was strangely disengaged.

‘The only thing that interested her was buying a jacket she’d seen. She fixated on it — it was so unlike her.’

This was in 2008, when Ranny, as friends and family called Lady (Rhianydd) Walker, was only 62. 

Richard Walker (right) with the Princess of Wales. He is campaigning to raise awareness about a rare form of Alzheimer’s  

At the time Richard put her behaviour down to stress: he was later to learn it was a sign of early-onset (or young-onset) Alzheimer’s, a rare form of the disease that affects around 70,000 people in the UK.

Alzheimer’s is the most common type of dementia and is described as early-onset if diagnosed before the age of 65. Symptoms of early-onset Alzheimer’s often include difficulties with problem-solving, mood swings and poor concentration, rather than memory loss.

The disease can be inherited, although this does not seem to have been the case for Ranny, neither of whose parents had shown any signs of dementia. Regardless of this, her subsequent diagnosis in 2010, at the age of 64, was like a bomb going off for her close-knit family.

Her husband, Iceland founder Sir Malcolm Walker, Richard and his two older sisters, Alexia and Caroline, were forced to watch, heartbroken, as the Ranny they knew and adored gradually disappeared in front of their eyes.

She died 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.

‘Mum never became aggressive but it was as though her personality was being hollowed out.

‘The illness ate everything away. Going out became upsetting for her so she stayed at home or in the garden.

‘Over the space of eight years she progressed to a wheelchair, then a chair, and finally, for those last few years, she was in bed.

‘The reality of the end is brutal. You are incontinent, you can’t speak, you can’t feed yourself, you are bedbound.

‘Mum was such a private and proud person. And there was absolutely no dignity.

‘It’s important people understand just how difficult it is for the patient and their relations.’

The Walker family, determined that some good should come out of their family tragedy, have thrown themselves into raising funds and awareness and are backing the Rare Dementia Support Centre (Malcom Walker and Richard Walker on Everest in 2011)

Early-onset Alzheimer’s is one of seven rare dementias that are currently the focus of a campaign by The National Brain Appeal.

The charity is raising funds to build the world’s first Rare Dementia Support Centre in London, to help patients with these lesser-known diseases and their families.

Proportionately more likely to occur in people under 65, together these rare forms account for up to 15 per cent of all dementia cases.

The other rare types are: frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial frontotemporal dementia, familial Alzheimer’s and dementia with Lewy bodies.

Part of the University College London (UCL) Queen Square Institute of Neurology, the state-of-the-art centre will be the world’s first hub of excellence for treatment and research of these rare forms of dementia. It aims to offer tailored support to people living with inherited, atypical and early-onset dementia.

Bespoke help for these younger patients is seriously lacking as most services are designed for older people.

This is compounded if the dementia has atypical features, such as if it predominantly affects non-memory skills such as behaviour. The centre plans to educate healthcare professionals such as physiotherapists, speech therapists and GPs about the special needs of these patients.

A third goal is to provide a dedicated space for pioneering research into rare dementias.

Professor Nick Fox, a consultant neurologist and director of the Dementia Research Centre at UCL, who treated Ranny Walker, is among those experts who welcome the plans, saying they will provide ‘specialist support for patients that is so needed and so hard for them to find’.

‘Research into early-onset Alzheimer’s is especially important, not just because of the burden it imposes on those affected and their families, but also because it gives us the opportunity to study people with Alzheimer’s disease only, rather than the multiple diseases typically associated with 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 some good should come out of their family tragedy, have thrown themselves into raising funds and awareness and are backing the Rare Dementia Support Centre.

They were able to afford round-the-clock care for Ranny, enabling her to stay at home, but they are acutely aware that is not the case for many others.

‘There was no centre for support, advice or community for someone like Mum,’ says Richard. ‘It’s easy to feel alone or unsupported. We desperately need to understand this terrible disease better and do everything we can to support patients and their families.’

The Walkers’ fundraising has received support from Iceland’s charitable foundation; along with staff donations, it has raised more than £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 tough for everyone.

‘There are painful things I can’t unsee,’ says Richard.

Her diagnosis, following cognitive tests and brain scans, was devastating. One positive, says Richard, was that an early diagnosis enabled the family to get expert support from Professor Fox and his team, who counselled them on how best to help Ranny.

‘At first we thought the best way of dealing with Mum’s condition was to treat her brain like a muscle and stimulate her by doing crossword puzzles,’ Richard says.

He adds: ‘But Professor Fox helped us see that actually you don’t want to put too much stress on the person. It can cause them a lot of anxiety. If she forgot something, we didn’t challenge her.

‘This is now standard advice but back then many families didn’t understand that.’

An early diagnosis was also helpful for Ranny. ‘For Mum, the biggest levels of anxiety and disorientation had been at the start when she knew something was up but couldn’t put her finger on it,’ says Richard.

One positive, says Richard, was that an early diagnosis enabled the family to get expert support from Professor Fox and his team, who counselled them on how best to help Ranny (pictured with his OBE in March) 

Richard is aiming to raise at least £1 million for The National Brain Appeal by scaling the world’s tallest peak, Mount Everest

‘Having a diagnosis and understanding how to cope improved Mum’s quality of life immeasurably.’

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 working on the till to stock-taking’.

‘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 sitting at her bedside listening to a Welsh male voice choir. ‘I noticed 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 at least £1 million for The National Brain Appeal by scaling the world’s tallest peak, Mount Everest, with mountaineer Kenton Cool from April 17.

Richard recently discussed his forthcoming trip with the Princess of Wales, who quipped that was why he looked ‘super fit,’ during a visit to one of his stores.

‘I know Mum would tell me I’m silly to be going,’ he says. ‘But this is too important. We need to take dementia and the terrible impact it has on families more seriously.’

To help Richard raise funds for the Rare Dementia Support Centre, visit: justgiving.com/campaign/coolwalkereverest