Patterns of progression in Alzheimer’s disease, Part 5

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.

In Stage 5, math, number and language deficits tend to grow more pronounced. People may not remember their address or phone. They may not be able to retain the names of three items on a grocery list or tell you a watch is a watch. But many people at this stage are aware of their growing deficits and anxious about it. They often try to hang onto every bit of independence they can, so that if you are a female caregiver and you tell a man with AD that it is time for him to get dressed, he is likely to say, Who died and made you boss?

However, most of today’s older men were raised with courtly manners, and years of "honey-do" lists from their wives and mothers. If, instead of giving an order, you can preface your request with a phrase like, Could you please help me with this? you are likely to be more successful.

Both their manners and their deeply ingrained tendency to be helpful make people in this stage natural hosts and greeters, so tap into this at social events. Station them at the door to welcome others or ask them to pass out drinks or desserts. Precisely because they want to hang onto their remaining strengths, they appreciate opportunities to be helpful and in residential or day care settings will often “parent” people in Stage 6 by helping with activities or grooming tasks such as brushing someone’s hair. My creative friend, Cameron Camp, Ph.D., former director of the Myers Research Institute, had success on that campus involving people in Stages 5 and 6 in a comedy club. Some people can still tell their own jokes, but Cameron provided others in large print on strips of paper that could be drawn from a hat and read. People who didn’t want to be jokesters were given other tasks – greeter, lemonade distributor, and audience members.

People in Stage 5 are usually able to go the bathroom on their own and eat on their own. They may be able to help with basic food preparation such as chopping vegetables, snapping beans, or stirring the cake batter, but they usually cannot be counted on to use a stove safely or follow a recipe without supervision. They tend to lose visual-spatial abilities so that setting a table or loading a dishwasher may be too challenging. They can still handle most grooming tasks, but some need their choices simplified – their clothes laid out in the order for putting them on, toothpaste put on their toothbrush and distractions such as cologne, lotions and hair spray removed from their line of vision. (This is definitely needed by Stage 6.)

Stage 5 is also when individual strengths are likely to begin showing up. Someone who was an accountant may not have the math deficits typical of this stage. A person who always did crossword puzzles and other word games may still be better than her peers at them. People who play a musical instrument may make some mistakes, but retain the basic skill until very late in the disease process.

There are also physical changes that tend to take place in Stage 5 as damage in the brain spreads to the hypothalamus – the part of the brain that controls body temperature and sleep. Difficulty sleeping or sleeping for an hour or two and then getting up and walking around are common in Stage 5 (and/or 6) and understandably upsetting to family caregivers who need their rest. People in Stage 5 also have a tendency to be colder than the rest of us, and nighttime restlessness and the tendency to be cold are sometimes related.

Next up: More middle stage changes in AD

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