Patterns of progression in Alzheimer’s disease, Part 4

One of the questions I am frequently asked by families and staff caring for people with Alzheimer’s disease is how to better understand the patterns of progression during the slow deterioration of the brain. This blog entry is a continuation of excerpts from my book, Alzheimer’s Basic Caregiving – an ABC Guide, as guidance on that topic. To order the book, click here.

Middle stage patterns

People with early stage dementia can usually still live alone with some assistance, especially if they have a spouse or adult child to help “fill in the gaps.” Assistive devices can also help.

By the middle stage or according to Reisberg’s GDS, Stage 5, people with AD are no longer capable of living safely on their own, although again, many people will continue to live at home under the careful supervision of a spouse, adult child or other caregiver. Others will move to an assisted living community or nursing home at this point.

Those who are living in a residential care community often look like visitors. They may be dressed up as if they are going out: men in suits or natty sports clothes with keys and wallets in their pockets; women in dresses, hose, make-up, jewelry and carrying purses. What’s more, they often believe they are visitors – why else would they be carrying their purses? If you come in as a real visitor, you may find that you can talk with a person in Stage 5 for several minutes without realizing she has dementia, especially if she is having a good day.

People in Stage 5 are dressed up because they believe they still have responsibilities (places to go and people to see), but their perceptions of their responsibilities are based on misperceptions, and they don't welcome your interference. They still have volition; they can form a thought, plan an action and follow-through. (Although some people may lose their train of thought along the way, lose the goal, and are perceived by others as purposeless wanderers.) Typically, they are living in (or float in and out of) a past reality so that a woman may believe she must be at home when her children return from school. Look for agitation at what would have been normal transition times in their daily routines, such as mid- to late afternoon. If you dare to suggest her children are long grown, her reaction is likely to be panic that you don’t believe her.

When you consider that they are often living at least part-time in a past reality, it is not surprising that people in the middle stage have increasing difficulty with time and dates. Indeed, time begins to lose its meaning. I’ll be back in 10 minutes, is not something they may be able to differentiate from 10 hours. They may have no idea what season it is without daily reminders: Good morning, George! Time to get up; it’s a beautiful spring morning.

Next up: More middle stage changes in AD