Stages of dementia: what to expect and what to plan for

When you look up the stages of dementia, what to expect is roughly this. The Alzheimer's Association describes three stages: early (mild), middle (moderate) and late (severe). In the early stage your mom can still do most things herself. In the middle stage, usually the longest, she needs more help every month and eventually can't be alone. In the late stage she needs care around the clock. The timing varies a lot, so the most useful thing you can do is plan for the next stage before you're in it.

The Alzheimer's Association is careful to say the stages are a general guide. They overlap, and it can be hard to say which stage someone is in. You may also see a one-to-seven scale on forums or in a doctor's notes. It slices the same decline into smaller steps. This guide uses the three-stage version.

The stages of dementia: what to expect at a glance

• Early stage. She may still drive, work and see friends. She loses words, forgets what she just read, misplaces things and struggles with planning and bills.
• Middle stage. She forgets her own history, gets confused about the day or the place, needs help dressing, and her sleep turns upside down. Suspicion, wandering and outbursts often show up here.
• Late stage. She can't hold a conversation, needs help with all personal care, and slowly loses the ability to walk, sit up and swallow.

These descriptions come from the Alzheimer's Association and the National Institute on Aging, and they're written about Alzheimer's, the most common cause of dementia. If her diagnosis is a different type, ask her doctor how it usually changes over time.

Early stage: what it looks like and what to put in place

Day to day, early-stage dementia can be easy to miss. The NIA lists memory loss that disrupts daily life, poor judgment, repeating questions, trouble with money and bills, getting lost, and mood or personality changes. It also notes that Alzheimer's is often diagnosed at this stage. Families often say she "seemed fine" to everyone except the person who did her bills. If the repeated questions are wearing you down, our guide to repeated questions in dementia has ways to answer them without losing your mind.

The Alzheimer's Association calls this the ideal time to put legal, financial and end-of-life plans in place, because she can still take part in the decisions. Its legal guidance says to get documents done as soon as possible, while she can still make decisions. This is the stage with a deadline nobody announces.

Middle stage: usually the longest

The Alzheimer's Association says the middle stage is typically the longest and can last for many years. This is the stage most daughters are living in when they go looking for help at 2 a.m.

What it tends to look like: she forgets parts of her own life, gets confused about where she is or what day it is, needs help choosing clothes, and has trouble with bladder and bowels. Sleep shifts so she naps in the day and is restless at night. The NIA adds hallucinations, delusions and paranoia, impulsive behavior, and agitation or wandering in the late afternoon and evening. She may refuse to bathe, accuse you of stealing, or ask to go home while she's sitting in her own living room.

What changes for you:

• She can't be left alone. The Alzheimer's Association says that early in the middle stage it becomes too difficult or dangerous for her to be alone.
• Driving stops during this stage.
• Wandering becomes a real risk, so door alarms and ID come now, not after she's gone missing.
• You need regular breaks. The Alzheimer's Association suggests respite care or an adult day center.
• If she lives alone, the Alzheimer's Association says she may need to move in with family or into a residential care setting.

This is also when to tour memory care, even if you don't plan to use it yet. Our guide on when it's time for memory care lists the signs, and how to pay for memory care covers the money.

Late stage: what it looks like and what matters

The Alzheimer's Association says the late stage may last from several weeks to several years. She needs help with all personal care, around the clock. She loses awareness of her surroundings, and over time she loses the ability to walk, sit and swallow. She may still say words or phrases, but telling you she's in pain gets hard. The NIA adds weight loss, more sleep, loss of bladder and bowel control, and trouble swallowing. Infections, especially pneumonia, become more likely.

Comfort becomes the focus. The Alzheimer's Association suggests reaching her through the senses: music she loves, gentle touch, brushing her hair, a familiar food. These can still reach her when conversation can't.

Hospice belongs in this stage. The Alzheimer's Association explains that to qualify under Medicare, a doctor has to judge that she likely has less than six months to live. Ask about it earlier than feels comfortable. The doctor can tell you whether she qualifies yet.

How long does each stage of dementia last?

Honestly, nobody knows for any one person. Here's what the Alzheimer's Association says about Alzheimer's:

• Early stage: can last for years.
• Middle stage: typically the longest, and can last for many years.
• Late stage: several weeks to several years.
• Overall: on average, a person lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.

Be wary of any chart that gives exact years for each stage. Diagnosis often comes years after the first symptoms, other health problems change the picture, and other types of dementia follow different patterns. A more useful question for her doctor is what they see in her right now and what usually comes next.

Take Linda, whose mom was diagnosed at 78. Linda wanted a number so she could plan her own job and money. The neurologist wouldn't give one. What helped instead was a list by stage: papers signed that spring, a day program once her mom couldn't stay alone, and memory care tours when the night wandering started. When the time came, her mom was already on two waiting lists.

What to say to her doctor and your family

• To the doctor, later on: "Would you be surprised if she died in the next six months? If not, can we talk about a hospice evaluation?"
• To your mom, early on: "I'm doing my own power of attorney. Will you do yours too, so I know what you'd want?"
• To a sibling: "She's in the middle stage now. That means she can't be alone. I need you to cover two days a month, or pay for an aide on those days."
• To yourself: "This stage won't last forever, and neither will this version of my job."

If she won't go to a doctor at all, see what to do when a parent refuses to see a doctor.

When a sudden change isn't a new stage

Stages change over months. A big change over a few hours or days is something else. MedlinePlus describes delirium as sudden, severe confusion, often caused by infections such as a UTI or pneumonia, or by medicines, and says it's usually temporary.

Questions caregivers ask

What stage of dementia does wandering occur?

It can start early, since the NIA lists getting lost among the signs of mild Alzheimer's. It becomes much more common in the middle stage, often in the late afternoon and evening. Our guide to dementia wandering at night covers keeping her safe.

How long does the first stage of dementia last?

The Alzheimer's Association says the early stage can last for years. It gives no fixed number, because it varies from person to person.

What's the life expectancy with dementia?

For Alzheimer's, the Alzheimer's Association gives an average of four to eight years after diagnosis, and up to 20 years. That's an average across many people, not a forecast for your mom.