What Is It Like to Live with Dementia? 8 Insightful Personal Stories

what is it like to live with dementia

You’ve probably wondered what seniors with dementia are thinking

When you’re caring for a person with Alzheimer’s or dementia, you’ve probably wondered: what is it like to live with dementia?

To shed some light on that question, BuzzFeed collected stories from people with dementia in the UK. These individuals shared what was happening in their minds and how it affected their ability to participate in everyday life.

Of course, each person’s experience with dementia will be unique. And not everyone would be able to articulate what they’re thinking, especially those in the middle to later stages.

But hearing these personal stories might help you understand a little bit of what’s going through your older adult’s head and what could be causing behaviors that seem odd or frustrating to you.

We share 8 stories from Buzzfeed’s article that gave us the most insight into the mind and behavior of someone with dementia.



8 personal stories: what is it like to live with dementia?

James Tomlinson in Bedford, England
“It’s just frightening. I get hallucinations where I think there are ghosts living in our garden. But my world seems to take on several dimensions. So I don’t know which house I’m in.”


Tommy Dunne in Liverpool, England
“[Words] might make sense inside your head but they don’t make sense when they come out. The words come out and I think ‘that’s not what I wanted to say’.”

“I’m a different person to the one my wife married…I can’t get through to the part of my brain that wants to her ask her how she is, give her a kiss and a cuddle.” 

He says that people living with someone who has dementia must “be prepared for when the dementia takes over. There will be days when we are angry, and days when we forget where we are in time. The more that you understand that it’s not the person with dementia that is angry with you, the more you will bear what is to come.”


Agnes Houston from Glasgow, Scotland
“For the past two days I couldn’t understand why my jammy bottoms were falling down. I thought, Oh dear, something’s happened to the cord and strap that holds it up. And guess what? My brain has just been tricking me. My eyes could see the cord and I knew it should have been there. I just couldn’t find it. My brain just wasn’t transmitting the signal.”

“My abilities to be able to cook are steadily diminishing…I am losing my ability to sequence, plan, prepare, and cook. I hate packing – I pick up one thing, put it down, look for another thing, look for the first thing you put down and it’s not there. You end up not knowing where anything is. You try to be logical, but you cannot be logical when you’ve got Alzheimer’s.”

“They talk about the losses you get with dementia, and yes there have been many losses, but not so with my hearing. My hearing has been heightened, almost painfully. I can be out having a meal and the noise gets louder – it’s just like a crescendo, it’s terrible. I can’t stand it and I just want to finish the meal and get away.”

“I seem to live in a state of constant anxiety, of not being able to cope with crossing the road, going shopping, having a shower. The day-to-day things have been more and more stressful and causing me panics. What does it feel like when I know that the slow progression is creeping in and getting more and more frequent? Frightening. Scary. I doubt myself.”


Next Step  Hear more personal stories from people with dementia in the full story at Buzzfeed


Recommended for you:


By DailyCaring Editorial Team
Image: The Medical Concierge



Be first to comment