What Exactly Is Dementia?
Dementia isn’t one disease. It’s a group of conditions that slowly steal memory, thinking skills, and the ability to do everyday things. People often think of dementia as just forgetting names or where they put their keys. But true dementia is worse than that. It’s when someone can’t follow a conversation, manage their money, or remember how to get home from a place they’ve been to a hundred times. And it gets worse over time.
The most common type is Alzheimer’s disease - it makes up 60 to 80% of cases. But that still leaves a big chunk of dementia cases that aren’t Alzheimer’s. Three other types - vascular dementia, frontotemporal dementia, and Lewy body dementia - are just as real, just as serious, and often mistaken for something else. Getting the right diagnosis isn’t just about labeling. It changes everything: what treatments work, what medications to avoid, and how families should care for their loved ones.
Vascular Dementia: When Blood Flow Fails
Vascular dementia happens when the brain doesn’t get enough blood. That’s usually because of blocked or burst blood vessels. High blood pressure, diabetes, and heart disease are the usual suspects. Over time, small strokes or long-term damage to blood vessels starve brain cells of oxygen. This isn’t one big event - it’s a series of small injuries that pile up.
What makes vascular dementia different is how it shows up. Symptoms don’t creep in slowly. They come in steps. One day, someone seems fine. The next, after a mini-stroke or TIA, they suddenly struggle to follow directions, forget recent events, or lose control of their bladder. They might also have trouble walking, lose balance, or feel weak on one side - signs you don’t usually see in early Alzheimer’s.
Brain scans show clear damage: white spots from tiny strokes, areas of dead tissue. The good news? You can slow it down. Controlling blood pressure (aiming for under 130/80), managing blood sugar, quitting smoking, and taking aspirin or similar drugs to thin the blood can cut the risk of more damage. The SPRINT-MIND trial showed that keeping systolic blood pressure under 120 reduced the chance of mild cognitive decline by nearly 20%. That’s not just prevention - it’s protection.
Frontotemporal Dementia: Personality Changes Before Memory Loss
If someone in their 50s starts acting completely out of character - becoming rude, impulsive, emotionally flat, or obsessed with food - don’t just assume it’s midlife crisis or depression. It could be frontotemporal dementia (FTD). Unlike Alzheimer’s, memory stays sharp in the early stages. Instead, the frontal and temporal lobes, the parts of the brain that control behavior, judgment, and language, start breaking down.
FTD is the most common form of dementia in people under 60. It hits hard and early. One person might stop caring about social rules, yell at strangers, or spend money recklessly. Another might lose the ability to speak clearly, struggling to find words or repeating the same phrase over and over. These aren’t choices. They’re symptoms of dying brain cells and abnormal proteins called tau and TDP-43 building up where they shouldn’t.
Diagnosis relies on brain imaging showing shrinkage in the front and sides of the brain. Neuropsychological tests focus on executive function - planning, organizing, decision-making - not memory recall. There’s no cure. But some antidepressants, especially SSRIs, can help with mood swings and compulsive behaviors. Speech therapy can support language loss. The big challenge? FTD is misdiagnosed as bipolar disorder, schizophrenia, or depression in up to half the cases. That means people get the wrong meds, and families are left confused, thinking their loved one is ‘just being difficult’.
Lewy Body Dementia: Hallucinations, Fluctuations, and Hidden Parkinson’s
Lewy body dementia (LBD) is tricky. It’s got the memory problems of Alzheimer’s, the movement issues of Parkinson’s, and the weird hallucinations of something else entirely. It’s the third most common dementia, affecting about 1.4 million people in the U.S. alone. But it’s often missed - up to 75% of cases are first diagnosed as Alzheimer’s.
The key to spotting LBD is in the pattern. People don’t just forget things. Their attention wanders. One hour they’re alert and clear. The next, they’re staring into space, barely responsive. They see things that aren’t there - people in the room, animals on the floor. These hallucinations are usually visual, detailed, and often not frightening to the person experiencing them. They might also act out their dreams at night - yelling, kicking, punching - a condition called REM sleep behavior disorder.
And then there’s the movement. Muscle stiffness, slow steps, shuffling walk, reduced facial expression. These look like Parkinson’s. But here’s the critical detail: if dementia comes first or within a year of movement symptoms, it’s dementia with Lewy bodies (DLB). If Parkinson’s comes first and dementia shows up years later, it’s Parkinson’s disease dementia (PDD). Both are LBD.
What makes this dangerous? Standard Alzheimer’s drugs like donepezil can help with thinking, but antipsychotics - even mild ones - can cause severe reactions. Some people become rigid, stop moving, or even die from neuroleptic malignant syndrome. That’s why diagnosis matters so much. Dopamine transporter scans (DaTscans) can help confirm it. Cholinesterase inhibitors like rivastigmine are the preferred treatment. And families need to know: those hallucinations aren’t always signs of psychosis. Sometimes, they’re just part of the disease.
Why Getting the Right Diagnosis Changes Everything
Here’s the hard truth: if you treat vascular dementia like Alzheimer’s, you miss the chance to prevent more strokes. If you treat FTD like depression, you give someone pills that won’t help and delay real support. If you give an antipsychotic to someone with Lewy body dementia, you might put them in the hospital - or worse.
Each type needs a different approach:
- Vascular dementia → Focus on heart health: blood pressure, cholesterol, blood sugar. Prevent the next stroke.
- Frontotemporal dementia → Manage behavior with therapy and SSRIs. Support language loss with speech therapy. Avoid drugs meant for memory.
- Lewy body dementia → Use cholinesterase inhibitors. Avoid antipsychotics. Address sleep and movement issues. Educate caregivers about hallucinations.
Brain scans - MRI for vascular damage, PET scans for metabolic changes in FTD, DaTscans for LBD - are essential. Blood tests can rule out other causes like vitamin B12 deficiency or thyroid problems. But even with tools, diagnosis takes time. Many families wait years before getting a clear answer.
What Families Need to Know
Watching someone change because of dementia is heartbreaking. But understanding the type helps you prepare.
With vascular dementia, you can fight back - by helping them eat better, move more, take their meds, and avoid smoking. Every small step reduces the risk of another brain injury.
With FTD, you’re not dealing with memory loss. You’re dealing with a personality shift. The person might not recognize they’ve changed. You’ll need patience, boundaries, and help from specialists who understand behavioral neurology.
With Lewy body dementia, you’re managing a rollercoaster. Some days they’re sharp. Others, they’re lost. Hallucinations might seem scary, but they’re often not threatening. Sleep issues are real - securing the bedroom and using a mattress pad can prevent injuries. And never, ever give them antipsychotics without a neurologist’s approval.
Support groups for each type exist. The Lewy Body Dementia Association, the Association for Frontotemporal Degeneration, and the American Heart Association all offer resources. Don’t go it alone.
The Bigger Picture: Underfunded, Overlooked
Alzheimer’s gets billions in research funding. Vascular, frontotemporal, and Lewy body dementia together get less than 5% of that. Yet they affect millions. We know how to slow vascular dementia. We’re starting to target the proteins in FTD and LBD. But without more money, progress stalls.
What’s clear? Dementia isn’t one enemy. It’s several. And treating them the same way is like using the same key for every lock - sometimes it works, but often, it breaks the lock.
If you or someone you love is showing signs of dementia - especially if memory isn’t the main issue - push for a specialist. A neurologist who works with dementia. Don’t settle for a quick diagnosis. Ask about brain scans. Ask about the type. Because knowing what you’re facing isn’t just information. It’s power.
Can vascular dementia be reversed?
No, brain damage from strokes or blocked vessels can’t be undone. But you can stop it from getting worse. Controlling blood pressure, diabetes, and cholesterol can prevent new damage. Many people stabilize for years with the right lifestyle and meds.
Is frontotemporal dementia inherited?
About 10 to 30% of FTD cases run in families, often due to mutations in genes like MAPT, GRN, or C9orf72. If multiple family members have early-onset dementia, behavioral changes, or ALS, genetic testing may be helpful. But most cases are not inherited.
Why are antipsychotics dangerous in Lewy body dementia?
People with LBD are extremely sensitive to antipsychotics because their brains have low dopamine levels and abnormal receptors. Even low doses of drugs like haloperidol or risperidone can cause severe stiffness, high fever, confusion, or even death from neuroleptic malignant syndrome. These drugs should be avoided unless absolutely necessary and only under strict neurologist supervision.
Can you have more than one type of dementia at once?
Yes. Mixed dementia - like Alzheimer’s plus vascular dementia - is common, especially in older adults. About 40% of Alzheimer’s patients also have Lewy bodies. This makes diagnosis harder but doesn’t change the need for careful, individualized care. Treatment focuses on the most disabling symptoms.
At what age does Lewy body dementia usually start?
Lewy body dementia typically begins after age 50, with most cases appearing between 60 and 80. It’s rare under 50. The average age of diagnosis is around 70, and life expectancy after diagnosis is usually 5 to 8 years, though some live longer with good care.
What to Do Next
If you’re worried about someone’s changes in thinking or behavior, start with a primary care doctor. But don’t stop there. Ask for a referral to a neurologist who specializes in dementia. Bring a list of symptoms - not just memory issues, but mood swings, hallucinations, sleep problems, or movement changes. Take someone with you. Write down questions.
Don’t wait for a crisis. Early diagnosis means better planning, safer meds, and more support. And if you’re already diagnosed, connect with a support group. You’re not alone. These conditions are complex, but with the right knowledge, families can make a real difference.