Dementia stages in plain words, and what each one tends to ask of a family

First, a real evaluation

Memory loss has many causes and some are treatable: thyroid problems, medicine side effects, depression, hearing loss, a vitamin deficiency, an infection. Only a clinician can tell what is going on. If nobody has done a full evaluation, ask the doctor for one, and ask whether a referral to a memory clinic or neurologist makes sense. Knowing the kind of dementia helps you plan and helps the doctor guide care.

Why stages help

Dementia is progressive, but not on a schedule. The Alzheimer's Association describes three broad stages, and notes that after a diagnosis a person lives four to eight years on average, and sometimes as long as twenty. Stages overlap and people move through them at different speeds. Use them to plan ahead, not to predict a date.

Early stage (mild)

The person is largely independent. They may forget familiar words or where they put things, have trouble with names, planning, or organizing, and lose track of something they just read. Friends may notice; the person may or may not.

What this stage asks of you: include them in every decision. This is the time for the health care proxy, the power of attorney, the money conversation, and the driving conversation, while they can take part and sign. Learn about the illness together. Set up a shared calendar and a medication system now, while it is easy.

Middle stage (moderate)

Usually the longest stage, often for years. Confusion grows, moods change, and the person may need help choosing clothes, bathing, and with bladder control. They may forget their address or personal history, and they may become restless, suspicious, or upset in the late afternoon. They can still take part in activities with help.

What this stage asks of you: routine, patience, and backup. Wandering and sundowning usually begin here. Nights get harder. Most families bring in help at home, an adult day program, or respite in this stage, and many start looking at memory care. The person needs you to respond to feelings rather than facts.

Late stage (severe)

The person needs help with all personal care around the clock. Speech becomes a few words, walking and then sitting become hard, and swallowing can be affected. They still respond to touch, music, and a familiar voice.

What this stage asks of you: comfort and presence. Ask the doctor about palliative care and hospice early; both come to wherever the person lives. Decide with the proxy what treatments the person would and would not have wanted, and ask the doctor about a MOLST.

Questions for the doctor at any stage

• What kind of dementia is this, and what does that mean for the next year?
• Could any of the current medicines be making memory or confusion worse?
• Is it still safe to drive, to cook, to be alone all day, to manage money? Will you say so in writing?
• What changes would you want to hear about right away?
• Is there a clinical trial, a memory clinic, or a dementia care program you would refer us to?
• Who on your team can I call with a question between visits?

You are not alone in this

The Alzheimer's Association helpline answers at any hour, for any dementia, at 1-800-272-3900. Our other dementia articles cover wandering and sundowning, communication, and daily care.