The stages of Alzheimer's, and what care each one actually needs

A diagnosis usually comes with a stage attached, and families reasonably want to know what it means for the next few years. The honest answer is that staging describes a direction, not a timetable. People move at very different speeds, some stay on a plateau for years, and other conditions — a chest infection, a fall, a bereavement — can cause a step down that partly recovers.

What staging is genuinely good for is deciding what to arrange now so that you are not arranging it in a crisis.

Early stage

What it looks like. Repeating questions, misplacing things, losing the thread of a conversation, trouble with money or a familiar route. The person is usually aware something is wrong, and that awareness is its own distress.

What care it needs. Usually none, residentially. Supports at home go a long way: a simplified medication routine, automatic bill payment, a written daily plan, GPS on the phone.

What to do now, while they can take part: this is the window for the decisions that get harder later.

• Legal. Durable power of attorney for finances, healthcare proxy or medical power of attorney, advance directive. Doing this while the person clearly has capacity is far easier than the alternative, which is a court-appointed guardianship.
• Money. Find the policies. If Medicaid is likely to be needed eventually, this is the time to speak to an elder law attorney — the look-back period on assets is the most expensive thing families discover too late.
• Preferences. Ask what they would want, and write it down. Later, "she told me herself" is worth more to you than you can imagine.
• Driving. Have the conversation before the crash, not after.

Middle stage

Usually the longest, often years, and the stage where most families first look at residential care.

What it looks like. Help needed with dressing, bathing and toileting. Confusion about time and place. Not recognizing people, or recognizing them as someone else. Repeating a story minutes apart. Personality changes — suspicion, sometimes anger, from someone who was never like that. Sleep inverted. Wandering. Late-afternoon agitation.

What care it needs. This is where the ceiling of standard assisted living is usually reached. The decisive questions are wandering and distress: a community that cannot secure the building, or cannot staff the evening, will eventually give notice. Memory care is built for this stage.

The behavior is communication. Agitation nearly always has a cause — pain, needing the toilet, too much noise, too many questions, a caregiver rushing. Looking for the cause works better than arguing, and arguing never works. A urinary tract infection can look exactly like a sudden collapse in cognition and is treatable; have it ruled out before concluding anything.

Late stage

What it looks like. Little or no speech. Help needed with everything. Difficulty swallowing, weight loss, vulnerability to infection. Loss of mobility. Often no recognition of family — though response to touch, familiar music and a familiar voice frequently outlasts everything else.

What care it needs. Skilled nursing, or a memory care community equipped and licensed to care through the end of life. This is why the earlier question — can you keep her to the end? — matters so much. A move at this stage is very hard.

Hospice belongs here and is under-used. Advanced dementia qualifies, and families often wait far too long. Medicare's hospice benefit covers nursing, medication for comfort, equipment and family support, and it can be provided where the person already lives. It is not giving up; it is changing the goal from treatment to comfort.

The one planning rule

Arrange each stage one stage early. Touring communities in the middle stage while there is no crisis gives you choice; touring in the late stage from a hospital bed gives you whatever has a bed on Thursday. The families who find this least brutal are the ones who did the legal paperwork in the early stage and the looking in the middle one.

Where to start

If you are at the point of looking, our city and state pages list which communities are licensed for memory care, and what to ask on the tour is worth reading before the first visit.

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This is a general description of how Alzheimer's is commonly staged. It is not medical advice, and individual courses vary a great deal — the person's physician and the Alzheimer's Association's 24/7 helpline are better guides to your own situation than any article.