What if the most significant challenge in understanding dementia isn’t the disease itself, but the silence that surrounds it? We often hear about dementia as a clinical diagnosis, a list of symptoms and losses, but rarely do we hear the authentic, human stories of those navigating this reality every day.
This collection moves beyond medical jargon to center the voices that matter most: individuals living with dementia, their care partners, and family members. Through eight raw and insightful personal stories, you’ll gain a rare window into the daily joys, profound struggles, quiet triumphs, and enduring love that define life after a dementia diagnosis.
Prepare to have your perspective deepened and your empathy expanded as we listen, learn, and truly understand what it means to live with dementia.
Ever Wondered What Aging Adults with Dementia are Thinking?
When you’re caring for a person with Alzheimer’s disease 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.
These individuals shared what was happening in their minds and how it affected their ability to participate in everyday life.
We share some especially insightful stories from 3 people with dementia from Buzzfeed’s article.
Hearing directly from these individuals gives us a better understanding of what they’re experiencing and what may be causing behaviors that seem strange or frustrating to us.
3 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 ghosts are 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 from the one my wife married…I can’t get through to the part of my brain that wants to 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 who is angry with you, the more you will bear what is to come.”
Agnes Houston from Glasgow, Scotland
“Dementia is more than memory. My brain and body are so tired that I can hardly cook my dinner.” But she can’t sleep in: “Something strange has been happening to me over the last four or five months. I’m waking up so early in the morning.”
“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 I 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 mea,l and the noise gets louder – it’s just like a crescendo, it’s terrible. I can’t stand it, and I 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, or having a shower. The day-to-day things have been increasingly stressful and are causing me to panic. 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.”
Final Thoughts on What it’s Like to Live with Dementia
These eight stories are more than narratives; they are powerful testaments to the resilience of the human spirit and the complexity of life with dementia. They remind us that behind every diagnosis is a whole person, with a rich history, a present reality, and a capacity for connection that often defies expectation.
While the journey is undeniably challenging, it is also punctuated by moments of clarity, humor, and deep love that redefine what it means to live fully. Let these insights move you from fear to understanding, and from uncertainty to compassionate action.
May they inspire you to listen more closely, to advocate more fiercely, and to see the person first, always. For in sharing these truths, we don’t just learn about dementia; we learn about the enduring power of dignity, relationship, and care.
Next Steps: Hear more personal stories from people with dementia in the full story at Buzzfeed
Recommended for you:
- 10 Ways to Respond to Dementia Hallucinations in Seniors
- How to Understand and Manage Dementia Behaviors: A Comprehensive Guide
- Do’s and Don’ts for Visiting Someone with Dementia
About the Author
Connie is the founder of DailyCaring.com and was a hands-on caregiver for her grandmother for 20 years. (Grandma made it to 101 years old!) She knows how challenging, overwhelming, and all-consuming caring for an older adult can be. She also understands the importance of support, especially in the form of practical solutions, valuable resources, and self-care tips.
