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Yes, goodgravy123, dementia of any kind is heartbreaking. And the worst kind of dementia is whatever your loved one has.

Most caregivers would like to know how much longer their loved one will live with this disease and what comes next. Unfortunately there really aren't reliable answers to that. Do you know what kind of dementia your mother has? If so, you can look up information about the life expectancy and often the general pattern of progression.

But realize that what you will find are "averages" that may not apply to your mother at all. In my local support group all of our loved ones have the same kind of dementia, whose "average" life expectancy is 8 years. One member lost his loved one within two years of the symptoms appearing. My husband lived 10 years with the symptoms. Some people had the symptoms escalate quickly and other were stable for years.

We want to know "what happens next, and how long will it last?" but we can't know. Science doesn't know how to tell yet. Talking to your mother's doctor may give you a little better idea of the answers, but there are no guarantees the answers will be correct in your mother's particular case.

I've been through this with my husband and with my mother. In each case my goal was to enable them to have the highest quality of life that the disease would allow.
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I just don't know much about it and many things I read are contrary to what I have
read before. I just don't want my mom to suffer for a long time. It's so heartbreaking
to go to see her and have her so confused she can't finish a sentence or think of a
word. Yesterday she couldn't even remember how to drink out of a pop bottle and
was hanging onto a rail along the wall like her life depended on it. She was sitting
in a wheelchair at the time so she wasn't going to fall.
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It depends on whose list you read and what kind of dementia is being written about.

This applies to all kinds of dementia that I am aware of: It gets worse over time. But how much worse how fast is a big unknown.

Alzheimer's Disease tends to follow a general pattern, because the nature of the damage in the brain follows a certain pattern as it spreads. Some people divide this into "stages" to kind of keep track of where the disease is at any given time.

Other kinds of dementia don't fit into the same pattern. With Lewy Body Dementia, for example (the kind my husband had) the damage also spread out in the brain and the symptoms depend on where the damage is. But unlike Alzheimer's the spreading of the damage doesn't follow a predictable pattern. Persons with this disease might be thought of as in "mild," "moderate," or "advanced" stages.

Dementia generally starts developing in the brain a decade or more before symptoms appear.

So there really isn't a definitive answer to "how many levels." Perhaps if you explain why you want to know we can provide information to address that.
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