Real stories

This is our dementia

Dementia devastates lives in ways we rarely see. Not just the life of the person with dementia, but the lives of those who care for them.

Cruel, baffling, upsetting, absolutely devastating, frustrating, heartbreaking and ‘like a parasite’, are just some of the words used to describe the condition that is eating away at all of their lives.

Our research shows that 900,000 people in the UK have a form of dementia. By 2040, 1.6 million people will be living with the condition in the UK, and many millions more carers, partners, families, and friends will be affected.

But unless you have dementia yourself, or care for someone that does, it’s difficult to understand what the reality of day-to-day life is like. 

Dementia is cruel, dementia is crafty, it’s upsetting, and it shatters a lot of your dreams.

Mark cares for his wife Francesca who is living with dementia

Francesca was diagnosed with behavioural variant frontotemporal dementia as a result of a brain tumour in 2021. Mark stopped working to become her full-time carer.

‘I love seeing that smile on her face.'

‘We don’t have the same discussions anymore; we don’t do the same things. On a selfish level, I miss the company. Now I’m not sure I’m going to get to grow old with someone. That’s tough,’ he says.

Alma's story of living with vascular dementia

Alma came from Calcutta in the 1960s and has lived in the same house ever since. She is cared for by her son Errol.

‘Having dementia is like you’re walking in a fog, and you’re struggling to find your direction.'

Alma says. ‘It would be very easy for me to say “No, I don’t suffer with dementia and just ignore it. But I can’t do the activities that I used to do.’

‘Dementia is frustrating. Just knowing that this is not going to get any better,’ says Errol.

'He's a wonderful son and he is a great support to me. Though he doesn't show it, I think he's very fond of me.' 

Liz's husband had mixed dementia

'It would be so nice for him to just call you by name, but that was not to be. He probably didn’t even remember that I was his wife, but he knew that he loved me,’ says Liz Trout of her husband Eric, who had mixed dementia.

‘People stop inviting you to places, your outside life sort of disappears, my whole world has got smaller and smaller and smaller, and that put great strain on me.’

‘When it was nice weather and I was working in the garden, he would come and sit in the garden on the patio there and he'd sing to me. And that calmed him a lot.’ 

Beverly cares for her mother Janet who has vascular dementia

‘She’s just not the person that I expected to be sitting with – really just the shell of an individual that I used to know.'

‘The dementia hasn't changed [everything]; there's nuggets of mum still.’ 

‘I have no clue how she managed to get three pairs of trousers on the other day.'

Trevor's wife Yvonne was diagnosed with early onset Alzheimer’s disease

‘One minute somebody can do something, one minute they can’t. One minute they recognise someone, the next minute they haven’t got a clue who that person is.'

‘You start with a wife and a mum and a friend, and you end up with somebody that you can barely recognise.’

'So as long as I can make her smile, which I still can, fortunately, [that] means a huge amount.'  

I miss this bubbly capable person who was my wife, the person that I loved and my best team mate. Seeing somebody so competent just become incapable.

Eugenie's grandmother Elsie had to go into a care home

‘It was so painful having to be the one to agree with a doctor that it was time to go into a care home. It just felt so unfair,’ Eugenie Arrowsmith says of her grandmother Elsie.

‘She’s lost some essential kernel of self-care. It’s just not there anymore. You can put drinks out, they don’t get drunk, food out, it doesn’t get eaten.’

Too many people face dementia alone

We want everyone affected by dementia to know that whoever you are, whatever you’re going through, you can turn to us for expert support through practical advice, emotional support, and guidance for the best next step. 

We understand all aspects of dementia. We’re the only dementia charity that offers dedicated support to those who need us now, campaigns for change, and funds ground-breaking research for a better tomorrow.

We will end the devastation caused by dementia. 

If you are concerned about dementia in yourself or a call our Dementia Support Line on 0333 150 3456.

Thank you to everyone who helped make this film

We’re incredibly grateful to each of the participants in our new film and their trust in us to help tell their stories.

Thank you as well to the Merton Dementia Hub for their support. 

We also worked with Bold Content Video and Casa Creative Studio to make this film.