Coping after a young-onset dementia diagnosis

Kim's husband Rob was diagnosed with young-onset dementia at the age of just 51. Read about how they coped after 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.

Rob and Kim smiling

‘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.'

Rob and Kim's son, Junior, with his wife and son

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

8 comments

I don't know if you have advice for me but my husband was diagnosed 4 yrs ago with alzheimer's he is 68 although he is able to go out for papers one of his daily routines, I am struggling with his sleeping habits going bed early and getting up at 2 in morning thinking it's time to go and get his papers, my husband doesn't chat or tell me what he wants, when I read about alzheimer's he doesn't seem to fit any where. I have talk to alzheimer's society about sleeping.

my beautiful dad just today had his brain scan results and he has Alzheimers. mum and sisters are devastated to say the least. He will be put om medication . Will this help?? Sorry all just cant get to grips with this and need a little help!

Hi Sharon, I'm very sorry to hear about your dad. I suggest giving our Helpline a call on 0300 222 11 22. One of our advisers will be able to provide answers to any questions you have.

Definitely, I always tell people if we are speaking to someone on holiday then they can understand the difficulty.

When we had a village store, I remember one of our customers coming in to speak to us. He told us that both he and his wife had a problem in that one of them had Alzheimer's and the other dementia, and if they appeared confused this was the reason. This meant that we were able to understand and help. He was very brave in coming in to speak like this as they were both intelligent people and had held good jobs in their younger days. It is definitely the best course to take.

I think its great that Kim and Rob are willing and able to tell/share their story, and for us /the public to be able to read it. Thanks. I (I am a carer and my husband has a diagnosis of Vascular Dementia) was at our local Carers meeting today where we were joined by 'newcomers' and one of their anxieties was whether 'to tell others/ and their partner who has the diagnosis of Dementia', that they have Dementia. We discussed feelings of guilt, feeling ashamed and embarrassed etc, which deterred us from mentioning 'Dementia', hence people around us 'did not know'. If they did not know, how could they help and understand Dementia. It is not a condition that anyone should be ashamed of, as anybody can be afflicted by it. And the lesson we took away was to take the first step and let people know - our neighbours, close friends and family, local shops and people we meet, if the occasion requires it - e.g in a shopping area, etc, and in doing so, highlight the condition, so that with the awareness of Dementia in the public domain, the profile of Dementia can be raised and highlighted and we don't feel isolated and alone in our caring role. Hopefully, this might lead into Dementia friendly communities, which in turn may help and support research. ( Sorry for going on!)

I agree with yiu there, I. Eat someone whose husband had been diagnosed and she told me. It to tell anybody. Why not, we are not
ashamed of my husband getting it, he did t ask for it, it is just another illness. Better our friends and neighbours know and then they are able to help us if need be. We have great neighbours and friends and would be lost without them. However after being part of two activities for several years it now feels as it if never happened as we never hear from any of them. You soon learn who your friends are, some of ours are wonderful as are most of our family

Should have written I met someone