Real stories

Coping after a young-onset dementia diagnosis

Dementia will affect us all. It’s set to be the 21st century’s biggest killer and, in the UK, one person develops the condition every three minutes. Despite this, dementia still doesn’t get the attention it deserves and too many people are facing it alone. Not only are those diagnosed with dementia affected, but their friends and family also have to learn to live with the condition.​

Rob and Kim Kim Davies, 52, from Portsmouth, cares for her husband Rob, who has Alzheimer’s disease. He was diagnosed young at just 51, after displaying symptoms of memory loss for several years.

‘My world crashed when he was diagnosed,’ Kim says. ‘Every single thing changed in a minute, we lost everything. We had a great social life, but we are now governed by his illness. It was a shock.’

Kim cares for Rob full time, and has to do almost everything for him, including helping him out of bed, helping him wash, dress and brush his teeth. She tries to preserve his dignity despite this, and tries to walk in his shoes to maintain their connection.

She shows him photos to jog his memory, and they still have a laugh. Rob is aware of his condition and appreciates what Kim does for him.

He says ‘I know I’ve got Alzheimer’s, what can I do, I can’t do anything, it’s hard, scary.’ ‘I love looking at photos…I do… I love it, it lifts my mood, it’s brilliant, I love every one of them. It jogs my memories.’

For Kim, Alzheimer’s Society has been a lifeline, and she says she doesn’t know what she would have done without the support. ‘Alzheimer’s can happen to anyone at any time, it’s not all doom and gloom. We still laugh. You have to deal with it.’

‘I had difficult conversations with my son who struggled with it at first.'

Kim and Rob’s son Junior is 30, and has a one year old son himself with his wife, Kat.

Junior admits he found it difficult to come to terms with his dad’s Alzheimer's diagnosis. Rob has always been his hero and Junior found it hard to accept that he could be ill.

‘I was an emotional wreck, very upset, tearful,’ says Junior. ‘It was quite difficult, very hard to come to terms with it, I became distant, didn’t want him to forget me.’

Eventually, however, Junior was able to focus on the positives.

‘I realised it’s not about me, I need to be there for him. Mum’s fantastic, the rock of the family, she keeps us sane.’

Junior says of his dad ‘when he plays with my baby son, he’s a natural. He can’t make a cup of tea but he’s a natural with him. He’ll always be my hero.’

Dementia doesn’t care how old you are. It’s caused by diseases of the brain so it’s not an inevitable part of ageing. In fact, more than 40,000 people with dementia in the UK are under 65. It’s predicted that, by 2021, a million of us will have dementia, and two million by 2051.

It’s time to forget our differences and come together to offer help and understanding, improve care and urgently find a cure for dementia.

Rob and Kim were on BBC News last night (24/04/17), skip to 16 mins in to watch their story