Caregiver guide
What is Alzheimer's disease? The facts families need
Alzheimer's disease is a brain disease that slowly damages memory, thinking and, over time, the ability to manage everyday life. It is the most common cause of dementia in older adults, it gets worse over time, and there is no cure yet, but there is real help for the person and for you.
The short answer
If a doctor has just said "Alzheimer's" or you're worried it could be, you probably have a hundred questions at once. Start here.
Alzheimer's disease is not normal aging. It is a disease of the brain. Proteins build up in the wrong places, brain cells stop talking to each other, and over years those cells die. Memory is usually affected first, then language, judgment, mood and, much later, the body.
Dementia is the word for that group of symptoms. Alzheimer's is one disease that causes it. So if someone tells you your person "has dementia", it's fair to ask: which type? Our Alzheimer's and dementia FAQ explains the difference in more detail, and our guide to the types of dementia covers the others.
What is Alzheimer's disease in simple terms?
Think of the brain as a huge network of wires carrying messages. In Alzheimer's disease, two kinds of protein clumps get in the way:
- Plaques are sticky clumps that collect between brain cells.
- Tangles are twisted fibers that build up inside brain cells.
As these spread, brain cells lose their connections and die, and parts of the brain shrink. The damage starts in the area that makes new memories, which is why people often forget recent things first but remember the past well.
These changes can start 10 years or more before anyone notices a problem. Read more in our guide on how Alzheimer's affects the brain.
What causes Alzheimer's disease?
Scientists don't yet fully understand why most people get Alzheimer's. For most, it seems to come from a mix of things that build up over many years:
- Age. This is the biggest risk factor. Most people first have symptoms in their mid-60s or later.
- Genes. A gene called APOE e4 raises the risk, but it doesn't mean a person will get the disease. A rare early-onset form, starting between about age 30 and 60, is usually caused by an inherited gene change. Our guide Is Alzheimer's genetic? explains what this means for your family.
- Heart and blood vessel health. High blood pressure, diabetes, heart disease and stroke are linked to a higher risk of memory decline.
- Lifestyle. Staying active, eating well, spending time with people and keeping the mind busy are linked to healthier aging, though none of them is a guarantee.
Nothing you did or didn't do as a family member caused your person's Alzheimer's.
What are the warning signs of Alzheimer's?
Memory loss that disrupts daily life
Asking the same question again and again, or forgetting recent conversations and appointments.
Trouble with planning and money
Struggling to follow a recipe, keep track of bills or handle numbers they once managed easily.
Getting lost or confused about time and place
Losing their way in a familiar neighborhood or forgetting what day or season it is.
Problems with words
Stopping mid-sentence, searching for common words or calling things by the wrong name.
Poor judgment and personality changes
New trouble with decisions, pulling away from friends, or becoming anxious, suspicious or easily upset.
What are the stages of Alzheimer's disease?
Alzheimer's usually moves slowly through three broad stages. Every person is different, and the stages overlap.
Early (mild) stage. The person may seem mostly fine to outsiders. Family notices repeated questions, missed bills, getting lost or taking longer to do everyday things. This is often when people are diagnosed.
Middle (moderate) stage. Usually the longest stage. Memory and confusion get worse. The person may have trouble recognizing family and friends, dressing, or coping with anything new. Restlessness in the late afternoon, wandering, suspicion and seeing things that aren't there can happen.
Late (severe) stage. The person needs help with nearly all care. They may lose the ability to speak, walk or swallow safely and spend more time in bed.
For a more detailed stage-by-stage chart, see the 7-stage scale on our Alzheimer's and dementia FAQ.
How is Alzheimer's diagnosed?
There isn't one simple test. A doctor usually puts the picture together from several steps:
- Questions for the person and a family member about health, daily life and changes in behavior.
- Short tests of memory, attention, counting and language.
- Blood and urine tests to rule out other causes, like a thyroid problem or a vitamin shortage.
- Sometimes a brain scan to look for strokes, tumors or other changes.
It helps to go along to the appointment. If it's hard to speak openly in front of your person, ask to talk with the doctor privately. Many memory problems have treatable causes, so getting checked early matters. Our memory loss guide explains what can cause forgetfulness besides Alzheimer's.
Is there a treatment for Alzheimer's disease?
There is no cure yet. But "no cure" doesn't mean "nothing can be done."
- Medicines for symptoms. Some medicines can help memory and thinking for a while in some people. They don't stop the disease, and they don't work for everyone.
- Newer treatments. Some newer treatments aim at the disease itself and may slow decline for certain people in the early stages. They aren't right for everyone and need careful testing and follow-up.
- Help with behavior and sleep. Changes like anxiety, restlessness or poor sleep can often be eased with changes to routine and surroundings, and sometimes with medicine.
- Research. People with and without memory problems can volunteer for studies. Families can also support research through the State of Florida Brain Bank, which ADRC coordinates.
Ask the doctor which options fit your person, what side effects to watch for and what to expect. This guide is general information, not medical advice.
What to do next if your person has Alzheimer's
Learning the facts is a good first step. The next one is not doing this alone.
- Talk it through. A free Care Navigation session helps you build a care plan around your family and budget.
- Meet people who understand. Our caregiver support groups meet in person around Orange and Seminole counties and online.
- Learn what's coming. Our education workshops teach practical skills, like how to talk with someone whose memory is changing.
- Find local services. Information & Referral connects you with adult day care, in-home help, elder law attorneys and more.
More free tip sheets are in our Caregiver Resource Library.
Questions families ask about Alzheimer's disease
Is there a difference between dementia and Alzheimer's?
Yes. Dementia is a general word for memory and thinking problems serious enough to affect daily life. Alzheimer's is the most common disease that causes dementia. Everyone with Alzheimer's has dementia, but not everyone with dementia has Alzheimer's. See our Alzheimer's and dementia FAQ for more.
Has anyone ever recovered from Alzheimer's?
No one has been cured of Alzheimer's disease yet. But some conditions look like Alzheimer's and can improve with treatment, such as medicine side effects, thyroid problems, low vitamin B12, depression or infections. That's one big reason to get a full check-up from a doctor instead of assuming memory problems are Alzheimer's.
What is life like for a person with Alzheimer's?
Early on, many people keep doing much of what they enjoy, with some help and reminders. Over time, the world can feel more confusing. Your person may ask to "go home" while sitting in their own living room, or feel sure someone took something they misplaced.
Later, the disease affects the body too, including walking, eating and swallowing. Many caregivers say no one warned them about that part. A calm routine, patience and familiar faces help a lot, and so does support for you.
At what age does Alzheimer's usually start?
Most people first notice symptoms in their mid-60s or later. A rare early-onset form can begin between about age 30 and 60. Any age, memory changes that get in the way of daily life are worth a doctor visit.
What is Alzheimer's disease named after?
It's named after Dr. Alois Alzheimer, a German doctor. In 1906, he studied the brain of a woman who had memory loss, language problems and unusual behavior, and found the clumps and tangled fibers we now call plaques and tangles.
How do you pronounce Alzheimer's?
Say it "ALZ-hy-merz." The first part rhymes with "pals," and the middle sounds like "high."
What is the only way to diagnose Alzheimer's for certain?
Doctors can usually make a confident diagnosis from tests, history and sometimes scans. For a long time, the only way to confirm it for certain was by examining the brain after death. That's one reason brain donation matters for research. Learn how families take part through the State of Florida Brain Bank.
Is Alzheimer's a normal part of aging?
No. Some slowing down is normal with age, like taking longer to recall a name. Alzheimer's is a disease, and the memory loss it causes gets worse and gets in the way of everyday life.
Download the free Alzheimer's Disease Fact Sheet
A short guide from the National Institute on Aging covering brain changes, symptoms, diagnosis and treatment. Based in part on National Institute on Aging guidance.
Alzheimer's & Dementia Resource Center (ADRC)
Alzheimer's & Dementia Resource Center (ADRC)
1470 Gene Street, Winter Park, FL 32789
Serving Orange and Seminole counties and Central Florida since 1984
(407) 436-7750
info@adrccares.org
Monday to Friday, 8:30 AM to 4:30 PM
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park, Florida, offers free help for caregivers in Orange and Seminole counties; call (407) 436-7750.