What does dementia feel like to the person experiencing it?

Caregivers, doctors and family members often describe dementia from the outside. Janice Swink offered a different perspective: what it felt like to recognize her own abilities changing, receive a diagnosis of frontotemporal dementia, give up parts of her independence and live with symptoms that could vary dramatically from one moment to the next.

Joe & Bella originally spoke with Janice in 2021 and published the conversation as a three-part interview. We have consolidated that series here and edited it for length and clarity while preserving Janice's own words and experiences.

Her story is one person's experience with frontotemporal dementia, or FTD. The symptoms, progression and experiences of people living with FTD can vary considerably, so Janice's story should not be interpreted as a description of what everyone with the condition will experience. Current National Institute on Aging guidance similarly emphasizes that FTD can affect behavior, language, emotions and movement differently from person to person.

The First Signs That Something Was Changing

When we spoke, Janice lived in Kentucky with her husband, Eric, their two sons and her brother. She had been diagnosed with frontotemporal dementia in November 2015, but she believed changes had begun several years earlier.

At first, she attributed difficulties with balance and depth perception to fibromyalgia. Then she began having trouble finding words, and one experience after a routine trip to Walmart made it impossible to dismiss what was happening.

"My husband and I came out of Walmart, which we frequented probably weekly, and I had no idea where we were."

Eric later told her that she looked panic-stricken. The experience frightened Janice enough that she voluntarily stopped driving even before receiving her diagnosis.

"It scared me so bad. I thought I could cause a really bad accident, and I obviously didn't want to do that."

Janice was around 60 when she began noticing these changes. Part of what made the possibility of dementia so surprising was that she had associated the condition with much older people.

"I was shocked when my doctor told me she thought I had early-onset, because I thought dementia was only something people much older than me would get."

FTD often occurs at younger ages than many other dementias. The National Institute on Aging reports that roughly 60% of people with FTD are between ages 45 and 64.

Getting a Diagnosis Wasn't Straightforward

Janice's path to an FTD diagnosis was frustrating.

She described seeing multiple specialists, undergoing cognitive testing and feeling that one doctor did not believe she was fully trying during the evaluation. Janice knew something was wrong and wanted an explanation, which made feeling dismissed particularly difficult.

"I knew that something was wrong with me and I wanted to get to the bottom of it, but then my doctor accused me of being lazy and not trying."

Eventually, Janice and Eric sought another opinion. She was evaluated by a dementia specialist who ordered additional testing and reviewed other possible explanations for her symptoms before diagnosing her with FTD.

Her difficult diagnostic experience is not unusual in one important respect: FTD can be challenging to diagnose, particularly early on, because its symptoms can overlap with other neurological, psychiatric and cognitive conditions. There is no single test that definitively diagnoses FTD during life, so clinicians generally evaluate symptoms while using testing and brain imaging to help distinguish it from other conditions.

"What Am I Supposed to Do, Just Sit Here Until I Die?"

Receiving the diagnosis was devastating.

Janice remembered leaving the doctor's office with Eric and trying to understand what her life was supposed to look like now.

"I asked my husband, 'What am I supposed to do, just sit here until I die?'"

For a period of time, that's essentially what she felt herself doing. She spent much of her time in bed with the shades drawn and the door closed.

Eventually, something shifted.

"I thought one day, 'You know what? I don't want to leave my family. I'm not ready for this.' So I made myself get out of bed."

Janice began asking herself a different question.

"What can I do that's good with this diagnosis? How can I take something so bad and use it for good?"

That question became central to what she did next.

Why Janice Started Sharing Her Life With Dementia

Janice decided that if she was going to live with dementia, she wanted other people to understand what the experience was actually like.

She began documenting parts of her daily life online. Some posts showed good days and moments of joy. Others described symptoms and experiences people often hesitate to discuss publicly.

"I said that I'm not going to sugarcoat it and that I will share the good, the bad and the ugly."

Her goal wasn't simply to document what was happening to her. She wanted caregivers to better understand behaviors they might otherwise interpret as stubbornness, anger or intentional resistance. She also wanted other people living with dementia to feel less alone.

"Maybe I can help one person and it will be worth it if I can help one person."

As more people began following and responding to her posts, Janice heard from caregivers who told her that her descriptions helped them look differently at experiences they had gone through with their own parents or partners.

What Janice Wanted Caregivers to Understand

One message appeared repeatedly throughout our conversation:

What looks intentional from the outside may feel completely different to the person living with dementia.

Janice put it plainly:

"I hope that they try to understand all the different things that happen to people with dementia are beyond our control. We're not doing this on purpose to get back at you or anything."

That distinction mattered enormously to her.

Later in our conversation, she returned to the same idea when discussing caregivers becoming frustrated with behaviors or memory difficulties.

"I can't stand when people try to make me remember stuff or get frustrated with me. I know what's happening to me, that doesn't mean I can stop it."

Current NIA caregiver guidance for FTD makes a similar distinction. Behavioral changes associated with the condition are caused by the illness, and arguing with or trying to reason someone out of behaviors they cannot control may increase frustration.

Janice wasn't asking caregivers to pretend difficult behavior was easy. She understood that dementia affected everyone around her too. She was asking them to recognize that the person experiencing dementia may be struggling with the same situation from the other side.

A Typical Day Could Change From One Moment to the Next

One of the hardest things for Janice was unpredictability.

When asked how she prepared for dramatic changes in how she felt or functioned, she said she really couldn't.

"You can't prepare for it because I don't know what's going to happen."

At the time of our conversation, even a morning appointment could leave her exhausted for the rest of the day. She went out less frequently than she once had and described spending much of her time at home in pajamas.

Some everyday routines simply stopped registering as priorities.

"Sometimes I will wear the same pair for over a week and my husband will remind me when I probably need to change. That's just not something that I think about anymore."

Eric left reminder notes for medications and other tasks, but Janice explained that even a note sitting beside her chair could sometimes fail to register.

That variability was one of the most frustrating aspects of the disease for her.

"Some moments I feel totally fine, like now, and then five minutes later, I can't comprehend anything. It's the ups and downs that are so hard."

She described it as:

"The wildest roller coaster ride you will ever be on."

Losing Cooking Hurt More Than Giving Up Driving

Dementia changed not only what Janice could do, but parts of how she understood herself.

Before her illness, she had been fiercely independent. She was a single mother before meeting Eric and spent more than 20 years working in insurance as a claims adjuster, negotiating settlements and speaking with attorneys, doctors and judges.

Driving was one loss.

Cooking was another, and surprisingly, Janice found cooking harder to give up.

"That bothered me more than driving because I had been cooking since I was 10 years old and I was used to cooking for my family, making sure that they had good meals."

The importance of that loss wasn't really about preparing food. Cooking had been part of Janice's identity and part of how she cared for her family.

She reflected on the contrast between the life she once managed independently and the assistance she now needed.

"To go from that to where I am today is pretty unbelievable."

That is an important reminder for caregivers: losing the ability to perform a task can mean losing much more than the task itself. Driving, cooking, dressing, managing money or shopping may be connected to identity, family roles and a person's sense of independence.

Music Could Still Reach Her

Janice also described changes in how she experienced emotions.

At times, she knew intellectually that something was funny, sad or meaningful without feeling the emotional response she expected.

Music was different.

"The only time I really can have true feelings is when I listen to music. Because I love music."

She described music as almost euphoric.

"Music can just reach in me. And I've always loved music."

Her tastes were broad, ranging from orchestral music to Bruno Mars. Earlier in her illness, she also shared videos of herself dancing, sometimes at home and sometimes while she was out.

Those videos carried a message she wanted other people to see.

"I wanted to show that, even though I had dementia, I could still do something that I loved."

As her physical abilities changed, dancing became harder. That loss frustrated her, particularly because she had loved dancing since childhood.

Still, music remained connected to something recognizable and deeply personal.

Hallucinations Were Frightening Because They Felt Real

Janice also described experiencing hallucinations at the time of our interview, particularly at night.

She saw animals, people, shapes and frightening images that were not actually present. On one occasion she warned Eric not to step on a cat she believed was on the bedroom floor. Other experiences included seeing worms, figures near the window and faces in bathroom tiles.

From outside the experience, someone might assume that knowing these were hallucinations would make them less frightening.

That wasn't how Janice experienced them.

When asked whether she could remind herself in the moment that what she was seeing wasn't real, her answer was clear:

"No, not in the moment. It all feels real."

Janice's hallucinations were part of her individual neurological experience. FTD encompasses several disorders with different symptom patterns, and Janice herself described continuing uncertainty about whether another neurological condition might also have contributed to some of what she experienced. Her story should therefore not be read as suggesting that everyone with FTD will experience hallucinations.

Dementia Changed Life for the Entire Family

Janice spoke with enormous affection for Eric.

They met through an online dating site and married after dating for about a year. By the time we interviewed Janice, Eric had become the primary support for a household with substantial caregiving needs.

"I don't know what I ever did to deserve such a super person. He takes such good care of me and everybody in the house."

Janice also wrestled with guilt as Eric took on things she could no longer manage.

"I feel bad when more stuff is put on him as I lose more abilities."

Eric's response mattered to her. She recalled him telling her that even if he had known when they started dating that she would eventually develop dementia, he still would have married her.

Their family was navigating more than Janice's diagnosis. One of their sons was on the autism spectrum, and Janice's brother, who had vascular dementia, also lived with them.

Eric handled driving, shopping, cooking, appointments and many other household responsibilities.

Janice saw firsthand how caregiving could gradually consume someone's life.

"A lot of family caregivers feel like they're caught in this void, where the only people they see are those they care for."

Her concern wasn't theoretical. She watched the demands placed on the person she loved while knowing that she could not simply decide to need less help.

Talking With Her Children About Dementia and Death

Janice and Eric also had conversations with their sons about what was happening.

Neither son found the subject easy to discuss. Janice's younger son sometimes became upset when she couldn't remember something he had told her.

Her response was straightforward:

"I'm sorry, I can't remember. You probably did tell me."

The family also talked about death and Janice's wishes for after she died, including whether her cremated remains would eventually be placed somewhere her children could visit.

Those conversations were difficult, but they allowed her children to express what mattered to them as well.

At the time of the interview, Janice thought about death more often because she felt her symptoms were changing. But she had also learned that prognosis was uncertain.

FTD is progressive, but its course varies widely. The National Institute on Aging notes that some people live more than 10 years after diagnosis while others live less than two, making an individual's timeline difficult to predict.

Rather than becoming consumed by exactly how much time remained, Janice increasingly focused on what she could do with the time she had.

Why Bathing Became So Difficult

One of Janice's most useful insights for caregivers involved something extremely ordinary: taking a shower.

She hated showering.

But her resistance wasn't simply a refusal to maintain personal hygiene.

"The shower to me is like pins and needles going into my skin. I hate it."

Janice found alternatives that worked better for her at that stage, including a no-rinse body wash and washing her hair in the kitchen sink.

She remembered one shower in particular. She got out of the tub before realizing she had forgotten to rinse the shampoo from her hair. When she tried to get back in, she suddenly couldn't figure out how to turn the shower on.

She had to call Eric for help.

"That stuff just comes from out of nowhere."

Her experience illustrates why it can be valuable to ask why someone is resisting a routine before assuming they're simply being difficult.

For Janice, bathing could involve uncomfortable physical sensations, forgetting steps in a familiar sequence and suddenly being unable to operate something she had used countless times before.

"We Can't Come Back Into Your Reality"

Near the end of our conversation, we asked Janice what she most wanted family and professional caregivers to understand.

Her answer became one of the strongest statements in the entire interview.

"Just try to remember that we're really not trying to give you a hard time; this is our reality now."

She knew caregivers could become frustrated. She knew that someone with dementia might argue, refuse help, forget something repeatedly or respond in ways that seemed irrational.

But she wanted caregivers to understand what those interactions felt like from her side.

"It's not like something we're deliberately trying to do. We're not trying to be difficult."

She also disliked being pushed aggressively toward an action she didn't understand or want to take in that moment. In her experience, suggestions generally worked better than commands.

Then she summarized her perspective:

"We can't come into your world, you can't make us do that. That train left the station. You're going to have to try to come into our world."

Janice was describing what worked for her, rather than creating a universal rule for dementia care. Still, the broader principle aligns with current guidance for caring for someone with FTD: understand that disease-related behaviors are not deliberate, reduce unnecessary confrontation and adapt communication to the person's changing abilities.

Knowing What Was Happening Was Complicated

People sometimes told Janice that she was fortunate because she could still communicate about her condition and recognize some of what was happening.

She wasn't always sure it felt fortunate.

"I don't know if that's a blessing to know what I'm going through or if it would be better if I didn't know."

That awareness produced moments that were difficult to reconcile. She could explain her disease eloquently during an interview and then be unable to complete a familiar task later.

"It's like, how can I know that it's happening while not knowing how to turn on a shower?"

That contradiction gets at something caregivers can easily miss when they see someone functioning well in one moment.

Ability is not necessarily all or nothing.

Someone may communicate clearly about one subject and struggle with another task. They may remember something complicated and forget something seemingly simple. They may appear much more capable at one time of day than another.

For Janice, those inconsistencies were not evidence that she wasn't trying.

They were part of living with the disease.

Turning a Diagnosis Into Something That Could Help Someone Else

Janice never tried to portray dementia positively.

She described fear, hallucinations, exhaustion, incontinence, lost abilities, emotional changes and the effect of her illness on her husband and children.

But she also refused to let those realities be the only thing she contributed.

After receiving her diagnosis, she had asked herself:

"How can I take something so bad and use it for good?"

Sharing her experience became part of her answer.

She wanted caregivers to better understand the person on the other side of the behavior. She wanted people living with dementia to know other people were going through similar experiences. And she wanted to show that a diagnosis did not instantly erase everything a person loved, valued or could contribute.

"I just want to help people."

That may be the most important reason to preserve Janice's interview.

Dementia is often discussed entirely through the people caring for someone who has it. Janice gave us an opportunity to listen instead to the person living through it.

And what she asked from caregivers was remarkably simple: recognize that the person is still there, understand that the changes aren't intentional, and try to meet them where they are.

About This Interview

Joe & Bella originally interviewed Janice Swink in 2021. The conversation was published as a three-part series and has since been consolidated and edited for length and clarity.

Janice's comments describe her own symptoms, diagnosis, medical care and experiences at the time of the original interview. They should not be interpreted as medical guidance or as representative of every person living with frontotemporal dementia.

For current information about FTD, diagnosis and care, families can consult the National Institute on Aging or a healthcare professional experienced in dementia and frontotemporal disorders.

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