Dementia stories

Learn directly from people who have been through the dementia journey.

DEMENTIA STORIES

Exploring a dementia diagnosis and everything that comes next can be daunting. But there are many people who know what you’re going through.
From videos and podcasts to books and personal stories, there’s a world of resources out there to help you.

THE EARLIER THE BETTER

Hear from real caregivers about why an early diagnosis is worth it:

“Even as a medical professional, I struggled to find the right language to describe my mother’s early symptoms, such as impulsive financial decisions and hallucinations. When they gave her a psychiatric diagnosis, I pushed for a dementia evaluation - but the doctors focused on memory even though her issues had nothing to do with that. Lewy body dementia is the second most common form of dementia, but every doctor dismissed us initially.”
Liz
Caregiver
"My mother developed subtle personality changes in her 50s - a fixation on routine, an inability to use a cell phone, a lack of interest in her grandchildren - but we had no idea these were early signs of dementia. It was perplexing to be on the other side of it. Getting a diagnosis shifted the way we responded to her behaviors. It was no longer personal and we could focus on caregiving solutions."
Shivani
Caregiver
“Traveling down the dementia journey without an early diagnosis is like driving somewhere you’ve never been before without a map. You don’t know where you are going and you most certainly will get lost. An early diagnosis of dementia - and any underlying disease - empowers families to understand what is likely to happen well before being overwhelmed by behavioral changes and cognitive decline.”
Arnie
Caregiver
“Early and accurate diagnosis is personal to me because my mother wasn’t just living with dementia - she had frontotemporal dementia (FTD). At first, we only heard the word ‘dementia’ but that didn’t tell the whole story. Each type of dementia impacts the brain differently, and without knowing it was FTD, we were missing critical information about how to best support her.”
Dr. Easter
Caregiver
“My dad was brilliant and disciplined, the one who held our family’s finances and life together. Then the cracks appeared - reckless spending, car accidents, falling for scams, lewd behavior so out of character it was jarring. That’s when I knew: this wasn’t stress or aging. Something was profoundly wrong, and we needed to talk to doctors.”
Sekhar
Caregiver
"The long and winding road to an FTD diagnosis stole not just his health, but pieces of who he was. There is no playbook for navigating dementia in the prime of life - it is isolating, devastating, and beyond heartbreaking. That’s why awareness, early diagnosis, research, and support are so essential."
Deanna
Caregiver
“Recent developments in the approval of treatment drugs are for those in the earliest stages of dementia. As a caregiver for my wife who is past that point, each new approval brings added disappointment. An early diagnosis today offers new treatment options that could make a huge positive difference in what the dementia journey looks like.”
Arnie
Caregiver
“An accurate diagnosis is key - it not only helps families understand what they’re facing but also connects them with the right treatments, resources, and planning tools. For our African American and Latinx communities, where stigma and late diagnoses are far too common, early diagnosis isn’t just medical - it’s about dignity, empowerment, and creating space for families to thrive.”
Dr. Easter
Caregiver
“Dementia is the ultimate stress test for a family - emotionally and financially. You need time to put safeguards in place: caregiving support, legal protections, healthcare planning, and navigating benefits like Social Security, Medicare, and Medicaid. An early diagnosis doesn’t fix the disease, but it gives families a fighting chance to prepare instead of tearing each other apart.”
Sekhar
Caregiver
"It began with little things - forgetting familiar roads, sleepless nights, obsessively changing his 401k investments, repeatedly reciting lines from his favorite shows. But soon, the strong, active father I once knew was bedridden, unable to walk, talk, or care for himself."
Deanna
Caregiver

“Even as a medical professional, I struggled to find the right language to describe my mother’s early symptoms, such as impulsive financial decisions and hallucinations. When they gave her a psychiatric diagnosis, I pushed for a dementia evaluation - but the doctors focused on memory even though her issues had nothing to do with that. Lewy body dementia is the second most common form of dementia, but every doctor dismissed us initially.”
Liz
Caregiver
"My mother developed subtle personality changes in her 50s - a fixation on routine, an inability to use a cell phone, a lack of interest in her grandchildren - but we had no idea these were early signs of dementia. It was perplexing to be on the other side of it. Getting a diagnosis shifted the way we responded to her behaviors. It was no longer personal and we could focus on caregiving solutions."
Shivani
Caregiver
“Traveling down the dementia journey without an early diagnosis is like driving somewhere you’ve never been before without a map. You don’t know where you are going and you most certainly will get lost. An early diagnosis of dementia - and any underlying disease - empowers families to understand what is likely to happen well before being overwhelmed by behavioral changes and cognitive decline.”
Arnie
Caregiver
“Early and accurate diagnosis is personal to me because my mother wasn’t just living with dementia - she had frontotemporal dementia (FTD). At first, we only heard the word ‘dementia’ but that didn’t tell the whole story. Each type of dementia impacts the brain differently, and without knowing it was FTD, we were missing critical information about how to best support her.”
Dr. Easter
Caregiver
“My dad was brilliant and disciplined, the one who held our family’s finances and life together. Then the cracks appeared - reckless spending, car accidents, falling for scams, lewd behavior so out of character it was jarring. That’s when I knew: this wasn’t stress or aging. Something was profoundly wrong, and we needed to talk to doctors.”
Sekhar
Caregiver
"The long and winding road to an FTD diagnosis stole not just his health, but pieces of who he was. There is no playbook for navigating dementia in the prime of life - it is isolating, devastating, and beyond heartbreaking. That’s why awareness, early diagnosis, research, and support are so essential."
Deanna
Caregiver
“Recent developments in the approval of treatment drugs are for those in the earliest stages of dementia. As a caregiver for my wife who is past that point, each new approval brings added disappointment. An early diagnosis today offers new treatment options that could make a huge positive difference in what the dementia journey looks like.”
Arnie
Caregiver
“An accurate diagnosis is key - it not only helps families understand what they’re facing but also connects them with the right treatments, resources, and planning tools. For our African American and Latinx communities, where stigma and late diagnoses are far too common, early diagnosis isn’t just medical - it’s about dignity, empowerment, and creating space for families to thrive.”
Dr. Easter
Caregiver
“Dementia is the ultimate stress test for a family - emotionally and financially. You need time to put safeguards in place: caregiving support, legal protections, healthcare planning, and navigating benefits like Social Security, Medicare, and Medicaid. An early diagnosis doesn’t fix the disease, but it gives families a fighting chance to prepare instead of tearing each other apart.”
Sekhar
Caregiver
"It began with little things - forgetting familiar roads, sleepless nights, obsessively changing his 401k investments, repeatedly reciting lines from his favorite shows. But soon, the strong, active father I once knew was bedridden, unable to walk, talk, or care for himself."
Deanna
Caregiver

“Even as a medical professional, I struggled to find the right language to describe my mother’s early symptoms, such as impulsive financial decisions and hallucinations. When they gave her a psychiatric diagnosis, I pushed for a dementia evaluation - but the doctors focused on memory even though her issues had nothing to do with that. Lewy body dementia is the second most common form of dementia, but every doctor dismissed us initially.”
Liz
Caregiver
"My mother developed subtle personality changes in her 50s - a fixation on routine, an inability to use a cell phone, a lack of interest in her grandchildren - but we had no idea these were early signs of dementia. It was perplexing to be on the other side of it. Getting a diagnosis shifted the way we responded to her behaviors. It was no longer personal and we could focus on caregiving solutions."
Shivani
Caregiver
“Traveling down the dementia journey without an early diagnosis is like driving somewhere you’ve never been before without a map. You don’t know where you are going and you most certainly will get lost. An early diagnosis of dementia - and any underlying disease - empowers families to understand what is likely to happen well before being overwhelmed by behavioral changes and cognitive decline.”
Arnie
Caregiver
“Early and accurate diagnosis is personal to me because my mother wasn’t just living with dementia - she had frontotemporal dementia (FTD). At first, we only heard the word ‘dementia’ but that didn’t tell the whole story. Each type of dementia impacts the brain differently, and without knowing it was FTD, we were missing critical information about how to best support her.”
Dr. Easter
Caregiver
“My dad was brilliant and disciplined, the one who held our family’s finances and life together. Then the cracks appeared - reckless spending, car accidents, falling for scams, lewd behavior so out of character it was jarring. That’s when I knew: this wasn’t stress or aging. Something was profoundly wrong, and we needed to talk to doctors.”
Sekhar
Caregiver
"The long and winding road to an FTD diagnosis stole not just his health, but pieces of who he was. There is no playbook for navigating dementia in the prime of life - it is isolating, devastating, and beyond heartbreaking. That’s why awareness, early diagnosis, research, and support are so essential."
Deanna
Caregiver
“Recent developments in the approval of treatment drugs are for those in the earliest stages of dementia. As a caregiver for my wife who is past that point, each new approval brings added disappointment. An early diagnosis today offers new treatment options that could make a huge positive difference in what the dementia journey looks like.”
Arnie
Caregiver
“An accurate diagnosis is key - it not only helps families understand what they’re facing but also connects them with the right treatments, resources, and planning tools. For our African American and Latinx communities, where stigma and late diagnoses are far too common, early diagnosis isn’t just medical - it’s about dignity, empowerment, and creating space for families to thrive.”
Dr. Easter
Caregiver
“Dementia is the ultimate stress test for a family - emotionally and financially. You need time to put safeguards in place: caregiving support, legal protections, healthcare planning, and navigating benefits like Social Security, Medicare, and Medicaid. An early diagnosis doesn’t fix the disease, but it gives families a fighting chance to prepare instead of tearing each other apart.”
Sekhar
Caregiver
"It began with little things - forgetting familiar roads, sleepless nights, obsessively changing his 401k investments, repeatedly reciting lines from his favorite shows. But soon, the strong, active father I once knew was bedridden, unable to walk, talk, or care for himself."
Deanna
Caregiver

“Even as a medical professional, I struggled to find the right language to describe my mother’s early symptoms, such as impulsive financial decisions and hallucinations. When they gave her a psychiatric diagnosis, I pushed for a dementia evaluation - but the doctors focused on memory even though her issues had nothing to do with that. Lewy body dementia is the second most common form of dementia, but every doctor dismissed us initially.”
Liz
Caregiver
"My mother developed subtle personality changes in her 50s - a fixation on routine, an inability to use a cell phone, a lack of interest in her grandchildren - but we had no idea these were early signs of dementia. It was perplexing to be on the other side of it. Getting a diagnosis shifted the way we responded to her behaviors. It was no longer personal and we could focus on caregiving solutions."
Shivani
Caregiver
“Traveling down the dementia journey without an early diagnosis is like driving somewhere you’ve never been before without a map. You don’t know where you are going and you most certainly will get lost. An early diagnosis of dementia - and any underlying disease - empowers families to understand what is likely to happen well before being overwhelmed by behavioral changes and cognitive decline.”
Arnie
Caregiver
“Early and accurate diagnosis is personal to me because my mother wasn’t just living with dementia - she had frontotemporal dementia (FTD). At first, we only heard the word ‘dementia’ but that didn’t tell the whole story. Each type of dementia impacts the brain differently, and without knowing it was FTD, we were missing critical information about how to best support her.”
Dr. Easter
Caregiver
“My dad was brilliant and disciplined, the one who held our family’s finances and life together. Then the cracks appeared - reckless spending, car accidents, falling for scams, lewd behavior so out of character it was jarring. That’s when I knew: this wasn’t stress or aging. Something was profoundly wrong, and we needed to talk to doctors.”
Sekhar
Caregiver
"The long and winding road to an FTD diagnosis stole not just his health, but pieces of who he was. There is no playbook for navigating dementia in the prime of life - it is isolating, devastating, and beyond heartbreaking. That’s why awareness, early diagnosis, research, and support are so essential."
Deanna
Caregiver
“Recent developments in the approval of treatment drugs are for those in the earliest stages of dementia. As a caregiver for my wife who is past that point, each new approval brings added disappointment. An early diagnosis today offers new treatment options that could make a huge positive difference in what the dementia journey looks like.”
Arnie
Caregiver
“An accurate diagnosis is key - it not only helps families understand what they’re facing but also connects them with the right treatments, resources, and planning tools. For our African American and Latinx communities, where stigma and late diagnoses are far too common, early diagnosis isn’t just medical - it’s about dignity, empowerment, and creating space for families to thrive.”
Dr. Easter
Caregiver
“Dementia is the ultimate stress test for a family - emotionally and financially. You need time to put safeguards in place: caregiving support, legal protections, healthcare planning, and navigating benefits like Social Security, Medicare, and Medicaid. An early diagnosis doesn’t fix the disease, but it gives families a fighting chance to prepare instead of tearing each other apart.”
Sekhar
Caregiver
"It began with little things - forgetting familiar roads, sleepless nights, obsessively changing his 401k investments, repeatedly reciting lines from his favorite shows. But soon, the strong, active father I once knew was bedridden, unable to walk, talk, or care for himself."
Deanna
Caregiver

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