Dementia Stages and the Care Each Stage Tends to Need

Most staging language comes from Alzheimer's disease. The National Institute on Aging says Alzheimer's typically progresses through a preclinical stage with no symptoms, then mild, moderate and severe stages. The Alzheimer's Association uses the words early, middle and late for the same three symptom stages.

The Alzheimer's Association adds two cautions. The stages should be used only as a general guide, and it can be hard to place a person in one stage because stages may overlap. The disease also affects people in different ways, so two people can move through the stages differently.

Other dementias do not follow the same order of symptoms. The National Institute on Aging describes dementia in general as ranging from the mildest stage, when it is just beginning to affect a person's functioning, to the most severe, when the person must depend completely on others for basic activities of daily living. Our guide to the types of dementia covers how the common types differ.

The first two columns summarize what the two sources say about Alzheimer's disease. The last column is where families commonly look, not a medical recommendation. The stages and the help each tends to call for are:

The Alzheimer's Association says that in the early stage a person may function independently and may still drive, work and take part in social activities. The National Institute on Aging lists trouble handling money and paying bills, poor judgment, taking longer to finish normal daily tasks, and wandering and getting lost among the signs of mild Alzheimer's.

Help at this stage is usually light and practical: a pill organizer, automatic bill payments, someone to come along to appointments, a second set of eyes on the mail. The Alzheimer's Association calls the early stage the ideal time to put legal, financial and end-of-life plans in place, because the person can still take part in the decisions.

Where to live is a real question even now. Our guide to living options after an early diagnosis compares them.

The National Institute on Aging says that in the moderate stage, more intensive supervision and care become necessary. Its list of symptoms includes increased confusion, difficulty with multistep tasks such as getting dressed, changes in sleep, occasional problems recognizing family and friends, and restlessness or wandering, especially in the late afternoon or evening.

The Alzheimer's Association describes the middle stage as typically the longest, one that can last for many years. It also says that during the middle stages it becomes necessary to provide 24-hour supervision to keep the person with dementia safe. This is the point where many families find that a few hours of help no longer cover the day, and start asking when it is time for memory care.

Nights matter in a small home. California's dementia care regulation says a home with fewer than 16 residents must have at least one staff person awake and on duty at night if any resident with dementia is found to need awake night supervision. Ask a board and care home how it decides that, and who is awake.

The National Institute on Aging says people with severe Alzheimer's cannot communicate and are completely dependent on others for their care. It lists difficulty swallowing, loss of bowel and bladder control and increased sleeping among the symptoms. The Alzheimer's Association says intensive, around-the-clock care is usually required, and that hospice can be of great benefit in the final stage.

A California rule matters here. Assisted living communities, board and care homes and memory care homes are all licensed as residential care facilities for the elderly (RCFEs). The state's list of prohibited health conditions for RCFEs includes residents who depend on others to perform all activities of daily living for them. The same regulations let a home ask the state for an exception, and a home with a hospice care waiver does not need a separate exception for a terminally ill resident on hospice whose hospice care plan addresses the condition.

So whether a person can stay to the end depends on the home as well as the rules. Each home also decides for itself what it can manage, and two licensed homes can answer differently. See late-stage dementia and hospice in memory care for how that works.

A home that advertises dementia care must explain in its plan of operation how it handles changes in a resident's condition, including the conditions that would require a resident to be relocated. Ask to see that description, and ask:

• Which residents do you care for now: people in the early, middle or late stage?
• How do you decide that a resident needs awake staff at night?
• How often do you reappraise a resident, and how do you tell the family about changes?
• Do you hold a hospice care waiver, and have residents stayed here through the end of life?
• What change in my mother's condition would make you say she has to move?

Hamssa Benrekia is a senior living placement specialist in Torrance who works with families in the South Bay and Harbor area of Los Angeles County. She cannot say what stage your relative is in: that belongs to the doctor. She can talk through the care needs you are seeing now, shortlist licensed homes that say they can meet them, and go on the tours with you. Read more about memory care placement, contact Hamssa, or go back to the California Assisted Living Placement Guide.