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UNDERSTANDING DEMENTIA

See it. Ease it. Talk it through. Plan for it. A calm, private place to understand dementia, for anyone worried about their own memory, for families, and for everyone who cares.

A quick word first: this is for learning, not for diagnosing. Only a doctor can tell what is causing changes in memory or thinking. Nothing you do here is saved or sent anywhere.

Choose where to begin

Need to talk to someone now?

The Alzheimer's Association helpline is free, answers around the clock, and offers help in over 200 languages, including Spanish. Ask for a Spanish speaker when you call.

1-800-272-3900

Website: alz.org/helpline

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Part 1: Same Moment, Four Minds

Dementia is not one illness. It is a word for many different conditions that can affect memory, thinking, behavior, language, and sometimes movement. Each type can look very different.

To see how, meet Ray, a made-up man in his mid-sixties. Ray is making a short trip to the grocery store with his wife, Dolores. We will follow the same trip, five moments long, through four different types of dementia.

For each moment you will see two things: how it might feel from Ray's side, and what Dolores might notice from the outside.

Please remember: this is a glimpse, not the whole picture. Every person's experience is different, and many people live well with dementia for years. In every version, Ray is still Ray: a husband, a grandfather, a person with feelings, preferences, and strengths.

This subject can stir up strong feelings, especially if it touches your own life. You can stop at any time, and the help line is always on the menu.

Moment 1

Moment 1 of 5
What is happening

See it through

Same trip. Four different minds.

Ray went to the same store every time. What changed was how his brain handled it.

•Alzheimer's disease often starts with trouble holding on to new information, while long-practiced skills and old memories can hold up longer.
•Lewy body dementia brings ups and downs in alertness, vivid visual hallucinations, and movement changes. It also carries an important medicine warning.
•Vascular dementia tends to slow thinking and planning first, and it is linked to blood flow, so protecting the heart and brain matters.
•Frontotemporal dementia changes behavior or language, often at a younger age, while memory may hold up early on.
•Mixed dementia is common: many people have more than one type at once, and no two people are the same.
•Whatever the type, the person is still a whole person. Patience, simple words, and a calm setting help.

The Four Types at a Glance

Open any type to learn what it is, what it can look like, and what helps. These are general descriptions. A doctor can tell what applies to a real person.

Many people have more than one type at once (mixed dementia), and there are other causes too. Only a doctor can sort out which applies.

Part 4: Know the Signs, Then Plan

Learn what is common with aging and what is worth mentioning, rule out causes that can be treated, get ready for the doctor, and plan ahead while choices are still easy to make.

Normal Aging, or Worth Mentioning?

Read each situation and choose. There is no score to worry about. The explanations are the point.

Situation 1 of 10
...

What to take from this

A few of these now and then are a normal part of aging. What matters is a pattern, a change from how a person used to be, and whether it gets in the way of daily life.

If you notice several of the "worth mentioning" signs in yourself or someone you love, please do not wait and do not ignore them. Talk with a doctor. It may turn out to be something treatable, and if it is dementia, an early diagnosis opens up more choices.

Worried about someone else? It can help to gently offer to go along to the appointment.

This is not a test and cannot diagnose anything. It follows the Alzheimer's Association's comparison of typical aging and early warning signs.

Not Always Dementia

Memory and thinking problems have many causes, and some of them can be improved or fixed. That is a big reason to get checked early instead of waiting.

Sudden confusion is different. Get help right away. If confusion starts suddenly or gets much worse over hours or days, or comes with a fever, a severe headache, new weakness, trouble speaking, or a fall or head injury, call 911 or go to the emergency room. Sudden confusion (called delirium) can come from an infection, a medicine, or dehydration. It is often treatable, but it is urgent.
Medicines and how they mix

Many pills, or pills that interact, can cloud thinking. Some over-the-counter sleep aids and allergy pills can do this in older adults too.

Ask the doctor or pharmacist"Can we review every medicine, vitamin, and supplement I take? Could any of them be affecting memory or alertness?"
Infections and dehydration

In older adults, an infection such as a urinary tract infection may not cause the usual symptoms. Sudden confusion can be the main sign. Not drinking enough can also cause confusion.

Ask the doctor"Could an infection or dehydration be part of this? Can you check?"
Vitamin B12 and thyroid problems

Low vitamin B12 and thyroid problems (too little or too much) can affect memory, mood, and thinking. Simple blood tests can check both.

Ask the doctor"Can we check my vitamin B12 and thyroid with blood tests?"
Depression, grief, stress, and poor sleep

Depression, grief, and long stretches of stress can make it hard to focus and remember. So can poor sleep, including sleep apnea (breathing that stops and starts during sleep). These are treatable.

Ask the doctor"Could depression, stress, or my sleep be part of this? Can I be screened for sleep apnea?"
Hearing and vision loss

When we cannot hear or see well, we can seem confused, miss things, and pull away from people. Hearing aids and new glasses can make a real difference.

Ask the doctor"Can I have my hearing and vision checked?"
Other conditions a doctor can look for

A fall or bump to the head can cause slow bleeding that leads to confusion weeks later. A buildup of fluid in the brain (normal pressure hydrocephalus) can cause memory and walking problems, and it can sometimes be treated. Strokes and mini-strokes can also change thinking.

Ask the doctor"Is a brain scan or a visit to a specialist a good idea? Could anything here be treated?"

Get Ready for the Doctor

A little preparation helps the doctor see the full picture, and helps you feel steadier in the room.

What to bring

  • A list of every medicine, vitamin, and supplement (or the bottles themselves).
  • Notes about what you have noticed, with examples and dates. "Missed the same bill three months in a row" says more than "forgetful."
  • Your glasses and hearing aids.
  • A trusted person who has noticed the changes and can add what you may not see yourself.

What to say

Opening line"I have noticed changes in my memory (or in someone I love). Here are examples. I would like to find out whether there is a cause we can treat."
Good questionsCould a medicine, vitamin level, thyroid, infection, sleep problem, depression, or hearing loss be part of this? What tests do you recommend? Should we see a specialist, such as a neurologist, a geriatrician, or a memory clinic? What can we do now to stay safe and keep doing what we enjoy?
Practice with the Patient Advocacy Toolkit

The printed sheet has blank lines to fill in by hand. Nothing you type here is saved.

Plan While You Can

Important decisions are easiest to make early, when a person can say clearly what matters to them. Planning is not giving up. It is making sure your voice is heard.

Write down your health care wishes Name someone you trust to speak for you if you cannot, and record the care you do and do not want. Our Advance Directive tool walks you through it for your state. Open the Advance Directive tool → Prepare for the MOLST conversation If you or a loved one has a serious or advancing illness, a doctor may suggest a MOLST form. This guide helps you get ready to talk about it. Open MOLST Prep → Protect your money and your information Money mistakes and scams can be an early sign, and people living with memory loss are often targeted. Practice what is safe to share, and how to spot a scam. Open Smart Sharing → Spot the Scam Challenge Practice recognizing fake texts, phishing emails, and phone alerts before they cost anyone anything. Open Spot the Scam → Tell your story Writing down your life story helps the people who love you remember the whole person behind any diagnosis. Open Legacy →
Money and legal papersMany people also talk with an elder law attorney about a durable power of attorney, and set up a trusted contact and alerts with their bank. This page is general information, not legal advice.

Support is available

Alzheimer's Association 24/7 Helpline: 1-800-272-3900

Eldercare Locator (finds local services for older adults): 1-800-677-1116

Both can help in Spanish. Ask for a Spanish speaker when you call. The Eldercare Locator answers on weekdays.

More plain-language information in Spanish: MedlinePlus

Part 2: Experience It, Then Ease It

Each of these is a short, made-up glimpse of an everyday challenge that people living with dementia often describe. After each glimpse, you get to change the surroundings and try again, so you can feel how much a few small changes can help.

These glimpses are simple and not exact. They show a few challenges, not the whole experience, and every person is different. Choose any, in any order, and skip any you like.

There are no timers and no scores. You can skip or stop at any time. These glimpses are here to help you change the setting, not to make anyone feel bad.

A glimpse

You changed the setting, not the person

Notice what helped: more contrast, clearer cues, less noise, information written down, and simple choices. None of these tried to change the person. They changed the surroundings.

•Make things easy to see: strong contrast, even light, and plain, matte surfaces. Avoid dark mats and busy patterns.
•Make things easy to find: big picture signs, a different color on the door that matters, and the bathroom light left on at night.
•Make things quiet: turn off the TV and radio, close the window, and talk in a quiet room.
•Make things easy to remember: a whiteboard where it is seen, a phone reminder, one thing at a time, and never a pop quiz.
•Make words easier: give time, offer two choices, and keep a picture board.

Everyday technology can help here: motion-sensor night lights, bright bulbs, smart plugs that turn off the TV, phone reminders, and shared calendars. Devices that track or watch a person raise real privacy and consent questions, so talk with the person and their doctor first.

Part 3: The Conversation Room

Practice talking with Margaret, a made-up woman in her late seventies who is living with dementia. You are Sam, a family member who looks in on her.

In each short conversation, Margaret will say something you may really hear. Choose what you would say. Watch her mood meter move between upset, uneasy, and calm, and read why your words helped or did not. Nothing is scored.

Margaret is a made-up character, and real people differ. Use these ideas as a starting point, not a script.

Quick tips to keep in mind
  • Come from the front, say your name, and get down to her eye level.
  • Use short, simple sentences. Ask one question at a time.
  • Offer two simple choices, such as "tea or coffee?", instead of open questions like "what would you like?"
  • Respond to the feeling, not only the facts: "That sounds scary."
  • Try not to argue, correct, or quiz her. Avoid "Don't you remember?"
  • Give her time. Try not to finish her sentences.
  • Cut down noise and distractions, and make sure her hearing and vision are checked.
  • Look after yourself. Caregiving is hard. The Alzheimer's Association helpline, 1-800-272-3900, is free and open all day and night.

These are widely recommended starting points from dementia care organizations. No approach works every time, so ask the person's care team what works for them.

Conversation

Margaret
A made-up character