Alzheimer’s disease: what it is, the stages & what to expect

Plaques are deposits of a protein piece called beta-amyloid. They build up in the spaces between nerve cells.

Most people develop some plaques as they age. People with Alzheimer’s tend to develop far more, in a predictable pattern.

Tangles are twisted fibers of another protein, called tau (it rhymes with “wow”). They build up inside nerve cells.

Plaques and tangles are the two hallmarks of Alzheimer’s. Experts believe they block communication between nerve cells and disrupt what cells need to survive.

Nerve cells (neurons) send messages around the brain and to the body. In Alzheimer’s, many neurons stop working properly, lose their connections with other neurons, and eventually die.

It is this loss of nerve cells that causes memory failure, personality changes and trouble with daily activities.

Alzheimer’s first damages the parts of the brain involved in memory and learning. Later it affects areas for language, reasoning and social behavior. Eventually, many other areas of the brain are damaged.

Because Alzheimer’s usually affects the learning part of the brain first, the most common early sign is trouble remembering new information, like a recent conversation or event.

Some people first notice other changes, such as trouble finding words, judging space and distance, or reasoning.

Other types of dementia can begin with changes in personality, movement, or seeing things that aren’t there, rather than memory. A careful diagnosis helps tell them apart.

It is common to have mixed dementia, a combination of two or more types. For example, some people have both Alzheimer’s and vascular dementia.

Our brains change with age, and most of us notice some slower thinking or occasional forgetting. Serious memory loss, confusion and big changes in how the mind works may be a sign that brain cells are failing.

Many people with memory problems do not have Alzheimer’s. Depression, stress and other health problems can also affect memory, which is why seeing a doctor matters.

MCI can be an early stage of Alzheimer’s when the hallmark brain changes are present. But not everyone with MCI goes on to develop dementia.

How fast Alzheimer’s moves, and which symptoms show up, differs widely between people. Stages can overlap, so it can be hard to place someone in just one.

Alzheimer’s is called younger-onset (or early-onset) when it affects someone under 65. People with younger-onset Alzheimer’s can be in the early, middle or late stage.

Many people use the term “care partner” in the early stage, because the person may not need much help. Your role is support, companionship and planning for the future together.

Managing a daily schedule or a household budget is often the hardest part early on. Small reminders and cues can make a big difference.

Words that respect independence

• “Is there anything I can do to help?”
• “Would you like me to jump in if a name slips, or wait?”
• “Want to plan the week’s meals together, and I’ll do the shop?”
• “How is the amount of help I’m giving? Too much, too little?”

The Alzheimer’s Association suggests agreeing on a phrase or a nod that means it’s okay to help, and checking in regularly about how much support feels right.

The early stage is a good time to make legal, financial and end-of-life plans, while the person can still take part in decisions.

In this stage, people may struggle to find words, repeat questions, lose their train of thought, go back to their first language, or rely more on body language.

What helps

• Answer the feeling, not just the question. They may simply need reassurance
• Speak slowly and clearly in a gentle tone
• Use simple written reminders if they can still read

Losing independence and privacy can be very hard for the person. Encourage them to do as much as they can, and be ready to help. For example, lay out clothes in the order they go on.

Early in the middle stage, it becomes too hard or risky for the person to be left alone. They will also need to stop driving. Try to involve them in the decision, give specific examples, and promise to help with rides.

If they live alone, they may need to move in with family or into a care setting.

Depression, worry, irritability and repeating the same actions are common in the middle stage. Later, sleep changes, outbursts and wandering may appear.

Even when someone can no longer talk, research suggests some core of who they are may remain. In this stage, the world is mostly experienced through the senses: touch, sound, sight, taste and smell.

Ideas to try

• Brush their hair
• Look at old photos together
• Play their favorite music
• Prepare a favorite food
• Read aloud from books that mean something to them
• Rub in lotion with a scent they like
• Sit outside together on a nice day

In the late stage, communicating pain becomes difficult.

Weight loss near the end of life is expected, but it may also signal another illness. Talk with their clinical provider if you notice it.

Care needs in this stage may be more than a family can provide at home, even with help. Moving to a care setting is about making sure the person gets the care they need.

Hospice focuses on comfort, dignity and support for the person and their family.

The doctor asks about overall health, past medical problems, daily activities, and changes in behavior and personality. It helps to bring a family member or friend who has noticed the changes.

Simple tests check memory, problem solving, attention, counting and language. Repeating them over time shows how thinking is changing.

Standard blood, urine and other tests can find other possible causes. A mental health evaluation can show whether depression or another condition is causing or adding to the symptoms.

Other things that can cause memory problems include stroke, a tumor, sleep problems or an infection.

Brain scans such as CT, MRI or PET can support a diagnosis or rule out other causes. A spinal tap can measure proteins linked to Alzheimer’s in the fluid around the brain.

Many doctors can now order a blood test that measures beta-amyloid. Blood test results alone should not be used to diagnose dementia, but they can be considered along with other tests. Availability is still limited.

Specialists who may help

• Geriatric psychiatrists
• Geriatricians
• Memory clinics and centers
• Neurologists
• Neuropsychologists

People with memory problems should return to the doctor every 6 to 12 months.

If you notice sudden changes in how someone talks, understands or behaves, contact their doctor. It could point to another medical issue.

Things that can make symptoms worse

• Delirium, a sudden state of confusion
• Infections
• Stroke

There may be reasons behind the worsening that can be treated, so it is always worth asking.

A diagnosis affects everyone who loves the person. Short-term denial can give you time to adjust. Fear about the future, stress about not knowing what comes next, and anger at losing control are all common.

Recognizing these feelings can help you move forward and help the person live as well as possible.

As your relationship changes, you can find new ways to connect and deepen your bond. Even late in the disease, calming music and gentle touch can still help.

Free, confidential support for people living with dementia, caregivers, families and the public, at 1-800-272-3900. Help is available in more than 200 languages. Dial 711 for relay services.

A free public service of the U.S. Administration for Community Living. It connects older adults and families to local services such as meals, home care, transport and respite. Call or text 1-800-677-1116, or visit eldercare.acl.gov.

The National Institute on Aging’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center answers questions and makes referrals to local and national resources, at 1-800-438-4380. You can also visit alzheimers.gov.

Caregiving can feel overwhelming. If you are having thoughts of suicide or feel unable to go on, you are not alone. Call or text 988 to reach the 988 Suicide & Crisis Lifeline.

Text HOME to 741741 to reach a trained Crisis Text Line counselor.

Many countries have their own Alzheimer’s association. Alzheimer’s Disease International lists its member associations around the world.

findahelpline.com lists free, confidential crisis helplines by country. If you are in danger, call your local emergency number.