‘Mum, I’ve got to tell you something,’ Izzy Utterson, 28, tells her mother Joanna in a clip posted on Instagram.

Joanna, a former museum director and publishing executive who is now in the advanced stages of a rare form of Alzheimer’sfaces away from her daughter, appearing not to hear her at first.

Gently tapping her mother on the arm, Izzy catches Joanna’s attention. ‘I have to tell you something.’

‘You’re getting married’, Joanna replies.

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Izzy’s face lights up as she asks: ‘How did you know?’

The joyful clip, posted on Izzy’s Instagram page to her nearly 200,000 followers reduced most viewers to tears.

The London-based mindset coach filmed the clip in August after getting engaged to her fiancé Angus Warburton.

Her mother’s moment of clarity amid the fog of Alzheimer’s is what Izzy now describes as a ‘glimmer’ of the real Joanna, who is living with posterior cortical atrophy, also known as Benson’s syndrome.

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‘Those rare, incredible moments when someone with Alzheimer’s suddenly remembers or has their love and intuition shine through are so special,’ Izzy writes.

‘It’s like a little piece of them comes back, and for a second, everything feels right again.’

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Four years on from Joanna’s diagnosis, a form of dementia which affects the back of the brain, Izzy wishes she’d recorded moments like this.

‘Filming mum and having those moments to look back on has been invaluable,’ she tells the Daily Mail, which has launched its Defeating Dementia campaign with Alzheimer’s Society.

She describes her mother as ‘a walking, talking saint’ who instilled a strong work ethic in her children.

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‘My mum is one of the kindest people I’ve ever met – and I don’t say that lightly! She never said a bad word about anyone, was always true to her word and incredibly hard working.’

Izzy and her brother John grew up believing they could achieve anything thanks to their mother’s example; a woman whose children were her pride and joy, but who was also a powerhouse in her career – even making the Evening Standard’s Power 1000 List.

Describing Joanna as her ‘guiding star’, Izzy says: ‘We had an incredible relationship. We were very close. We’d travel the world together and do our little girls’ trips.’

In her early 20s, Izzy herself went through a period of illness after being diagnosed with psoriasis.

‘She really helped me through that and then, off the back of that when I recovered and reached the adult stage of my life, that’s when things started to take a bit of a turn.’

Joanna’s incredible kindness had long been a quality by which she was defined. But as she approached her 60s, Izzy, John and their father David noticed she was losing some of that characteristic warmth.

‘That level of kindness and empathy was slightly altered,’ Izzy recalls. ‘Not that it wasn’t there, but sometimes you’d be talking to her and it was as if she wasn’t really listening. As if she didn’t really care.

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‘It was so out of character for her, especially as we were getting to that stage where we were sharing with each other. I was getting a bit older and our relationship was changing the way it just naturally does.’

In addition to changes in her behaviour, Joanna began to struggle with every day tasks like understanding receipts and bank statements. She began to lose confidence when driving.

‘Benson’s syndrome can affect your spatial awareness and your eyesight,’ Izzy explains. ‘When mum was driving, she lost confidence and would forget where she parked the car.’

The 28-year-old describes the warning signs as ‘clear indicators’ that something wasn’t quite right with her mother, but notes they were also things that are explained away by other conditions such as stress, anxiety and depression.

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But in the back of her mind, Izzy’s ‘greatest fear’ was that her mother might have Alzheimer’s.

‘The way it’s portrayed in film and television is alarming and scary and I always thought it was the worst thing that could happen,’ she says.

Despite the worsening symptoms, which prompted tests, Izzy and her family were explicitly told that Joanna didn’t have Alzheimer’s. But, she recalls, there came a point when ‘there was nothing else it could be’.

Increasingly desperate for a diagnosis, Joanna’s family paid for a private scan.

Izzy acknowledges this isn’t an option available to everyone and believes the NHS is ‘amazing’ – but after years of trying and failing to get a diagnosis for their mother, they didn’t know where else to turn.

Just as they had suspected, the scan detected PCA, a rare form of Alzheimer’s which affects the occipital lobe.

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When the diagnosis finally came, it brought both relief and devastation to Izzy and her family.

‘I remember the day we got the diagnosis like it was yesterday.’ While not unexpected, it hit Izzy hard.

‘My brother and my dad were incredibly stoic and hopeful about the whole thing. But I didn’t really cope,’ she says.

‘It’s like the stages of grief at the beginning. I was in denial. I was scared to even see my mum after the diagnosis because it was as if who she was had suddenly changed.’

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At first, Izzy’s mental health spiralled into a ‘dark’ place as she struggled to cope with her family’s new reality. She barely discussed it with her friends, as if saying ‘Alzheimer’s’ out loud would speak the reality of her mother’s diagnosis into existence.

But, knowing she needed to ‘show up’ for her mother, she broke through the darkness.

‘I was in a pretty demanding 9-5 job at the time so I only had the weekends to spend time with mum,’ she said. ‘But I knew I had to be in my best place for her.’

It was this motivation that led Izzy to a new career – making it on her own as a mindset coach and content creator. For the last two years she has built a loyal following on Instagram and TikTok by helping people overcome hardships in their life and encouraging them to make lifestyle changes to shift their mindset.

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She acknowledges that some days are significantly difficult than others and it’s not always possible to remain positive – but she credits her ‘incredible’ father David for keeping the family together while becoming a full-time carer for Joanna.

‘I’ve never seen anyone take on a job in such an incredible way. He held us all together in that, and was very hopeful,’ she says.

The family is under no illusions about the reality of Joanna’s illness. This month, the Daily Mail published shocking statistics that showed the disease is still the UK’s biggest killer, accounting for one in nine deaths and claiming 76,000 lives each year.

Dementia patients suffer a ‘cruel injustice’ as they often face higher care bills and there are no drugs available on the NHS to slow down, cure or prevent the condition.

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However, at odds with its impact, the disease receives less funding for research than some other major illnesses, such as cancer, despite costing the economy a staggering £42billion a year.

Despite a gloomy outlook, Izzy, David and John look out for the ‘glimmers’ in which Joanna’s personality breaks through the fog of dementia.

‘We don’t take that for granted at all,’ she says.

‘At the time of mum’s diagnosis it felt like the world was completely collapsing – and it still does sometimes – but I think we’re able to have a lot gratitude for the health and life that we have, and also the moments that we do get with her when she’s herself. They’re few and far between now.’

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For years, David looked after his wife with dedication and devotion. But in April, Joanna’s care needs changed significantly when she escaped from the family home and went missing.

She was found safe and well, but the frightening incident was a warning to the family that they could no longer provide the type of round-the-clock care Joanna needed and they began searching for a care home.

‘We made the decision that, for her to have the best quality of life, we needed to find her a home – which was tricky,’ she recalls. ‘But in the end we couldn’t have asked to find a better place for her.’

Izzy doesn’t doubt that she and her family did the right thing by Joanna when they moved her into a home, where she credits ‘amazing’ staff for taking care of her mother. But she’s unable to fight back tears when she recalls the day the move happened and the guilt she felt at the time.

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She says: ‘I think it was the worst day of my life, even though I knew it was the right decision. She actually thanked us. It was as if she came back for a moment and said thank you to us for putting her in there.’

Now, she visits her mother most days.

Last month, Joanna was admitted to hospital after developing an infection. Unfortunately it led to a significant decline in her condition and she has been bedbound for several weeks.

‘We’re not at end of life care yet, but those conversations are now being had. I saw mum the other day and spent several hours with her, just doing work on my laptop in her room. She slept most of the time.’

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Yet there are still ‘glimmers’ which keep Izzy going – which can be as little as a ‘hi’ from Joanna when she wakes up.

As Christmas approaches, the day will look significantly different for the Utterson family this year.

‘Mum was always the cook – none of us are very good cooks!’ she jokes.

Instead of a meal at home, Izzy, David and John will have Christmas lunch out, but not before they spend the morning with Joanna and her carers – for whom they have bought gifts this year.

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‘I held on to our traditions for a long time, and I found it really hard after mum got sick. But now we’re creating new traditions.’