Patterns of progression in Alzheimer’s disease, Part 8

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 in communication

Mixed-up relationships: By the middle stages, most people with Alzheimer’s disease are living in the past (or flit in and out of the present), and they may forget who has been born, who’s alive and who has died – even in the same conversation.

Perhaps because they have a hard time hanging onto present reality, people with Alzheimer’s disease often mix up names and relationships, saying “mother” when they mean “daughter,” for instance. For others, using “mother” for all close relationships may simply be a function of diminished vocabulary. If you are an aide in an adult day center and a woman of 85 asks, When is my mother coming to get me? You can usually interpret the question accurately if you say, Do you mean your daughter Julie? She’ll be here by 4:00.

Another woman I know thinks she is still a child at home. When I asked her to tell me her children’s names, she named her sisters, and that, too, happens fairly frequently.

Other people think they are young mothers and they are unable to recognize their grown children because they are living in a reality in which their children are at least 40-years younger. They may think their grown children are their contemporaries, their sisters or brothers, or sometimes even their spouses if the son looks like his father or the daughter looks like her mother.

Other people may mistake their care assistants as their children. Since they still think they live at home, you must be one of their children, because why else would you be there helping them?

Generalities as a cover-up: When people with Alzheimer’s disease have trouble providing specific answers, they often use bland generalities as a substitute, perhaps because they have found they can seem successful in doing so. For example, I was involved in producing a videotape some years back in which we interviewed a number of residents with Alzheimer’s disease in an assisted living community.

• We asked Mrs. S what she and her daughter did together. She answered: We go here and there….we go one place to another.
• We asked Col. C what countries he had been to and he answered, Oh, you name it; I guess I’ve been there.
• We asked Mrs. G what her mother (whom she believed was close by) liked to cook. She answered: What I like. We asked, What do you like? and she answered, Nice food.

We asked another woman to tell us about a place she lived that we knew was important to her. She said, Well, we had a nice house. It’s on the water. And I had my things made up nicely for walking around and of course, there was all the school business. It was very nice. We lived there twice and it was very, very nice.

This woman’s use of the phrase, “very nice,” is what we call a comfort phrase for her. It’s like a verbal security blanket. She knows this is an acceptable comment that will get her through many situations, and she uses it often.

Closely related to this is the person who gives “pat” answers no matter what you ask. Some women with Alzheimer’s disease will say, No thank you, dear, I’m fine, to anything you ask, when in reality they are cold, hungry or in pain, but find that harder to communicate.

Watch out for residents who use one phrase repeatedly. Be careful that you don’t miss real needs that are hidden by their inability to ask for specifics. For instance, it’s easy to come up to a person and hold her hand as you greet her. If her hand is cold, you can be pretty sure she is cold, no matter what the temperature is, and a sweater or in some situations, perhaps cotton gloves, would be appropriate for her.

Comfort phrases and pat answers are different from repeated questions. The person who asks you the same question a dozen times in 20 minutes really doesn’t remember asking you before – and it’s the feeling behind the question that needs answering. A person asking, “When is lunch?” may be hungry. A person asking, “When is my daughter coming?” may be feeling anxious, insecure or even fearful of being abandoned. She needs compassionate reassurance.

Next up: More communication challenges in middle stage AD