Understanding Negativism in Dementia Patients

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Part of the problem in dealing with dementia patients is their “attitude”, they generally are negative. Because caregiving already requires a big effort in its day-to-day demands, any negativism is just one more thing to face. Understanding its origin can help to make it more tolerable and sometimes even avoid it.

In my article “The notion of time in dealing with a dementia patient”, I say that living without a short-term memory obliges the dementia patient to live in the present moment only. It means that they have little feel for why things happen because they cannot remember what did just happen. The whole idea of cause and effect disappears so they come to believe that anything can happen. Memory loss is so destabilizing that it is difficult for these patients to be positive. Since, with no memory, they cannot prepare themselves for future events, they have the impression that things keep happening to them against their will. This is particularly true of “control-freaks” like my mother. Since she can no longer control things, her idea of the perfect day is the one where we stay home all day. Her sigh of pleasure is audible when I announce that there are no plans for that day.

For a caregiver, this can be a little depressing because it means that every proposal of an activity is going to be met with a range of reactions going from a hesitant “OK” to an all-out “Not today, my back is killing me”. In my case, I have learned that my mother will always say yes at the breakfast table, but then try to back down at the last moment. Knowing this, even I can be surprised. The other day I saw that there was a book sale at a library 30 min. away. I knew my mother could handle this length of trip since we had done just about the same ride the previous week merely to buy some yarn. My mother also used to be a librarian and is/was an avid reader. (It is hard to read a novel when you can’t remember what you just read.) At the breakfast table she was VERY enthusiastic although she did keep emphasizing that I was the one who wanted to go and she wanted to do something for me. I heard the alarms going off in my head but decided to push on; after all, my pile of thrillers had definitely dwindled to nothing and spending the whole day in the house is not my idea of fun.

After two reminders, my mother was finally dressed and we left. I was convinced that she would come up with her usual demand to return home before we got to the main road, but she didn’t. 10 minutes into the ride we had run out of conversation, 20 minutes into the ride she started to ask how much longer it would be and I could sense her starting to tense up. I proposed that we stop for a coffee and she snapped at me that it would be better to get this over with. On my side, I was trying to stay zen; after all, we were having an outing; any books would be a luxury. As soon as possible, I started oohing and aahing at how well the library was indicated, the size of the BOOK SALE sign, etc. When we pulled into the handicapped parking space right next to the door, I thought she might actually refuse to get out of the car. I could see she was seething.

For me, of course, there was no reason for her reaction, BUT it was fairly apparent what was going on in her mind: this was not our usual library, the ride to a place she didn’t know was scary, the time it took felt like an eternity. I “cheerfully” took out her walker and our reusable shopping bags, chatting all the time about how great this was and how I had really run out of books, etc. When we first went in, she was looking so angry I decided to leave her on her own so that she could feel more independent and I could get down to my own selection; I knew my time was limited. As expected, she chose only books that were familiar (i.e. we have them at home). Fortunately, she had decided to budget herself to $4 so that meant only 8 books. (She groused to me that at “our” library, secondhand books are only 25c.) When I saw her original selection, I decided to mention that we had two of them at home so she said to take them out of her pile and she would choose others. I did a little sleight of hand (my father was a magician) and removed two more. These were, of course, replaced with 4 more “repeats”, but now she was feeling much more comfortable. Walking among the tables allowed her to familiarize herself with the place in the half hour that we were there and she does love books. Then too, the fact that I finished choosing my books at the same time she did, was very satisfying to her. Learning that we had gotten 33 books for $16.50 amazed her and put a very positive light on our little outing.

So was it worth it? After all, I had spent the whole trip wondering whether we would actually get to the sale. The time at the sale was spent trying to keep an eye on my mother and yet trying to choose books for myself. On the other hand, my mother’s relief on the return trip that everything had gone well was obvious. Gone was the silence that had marked the outward journey: she talked about the scattered rain showers that we kept going through, she talked about the bargain that we had gotten (each time asking me for the figures), she talked about the restaurant where we were going to eat (we finally ate at home). Even a few days after, when she saw me reading a book, she would ask if it was from “the trip”. How she remembered the trip, I don’t know, but it had definitely been a good stimulus and every little thing helps.

So the answer is yes, it is worth it because when you become a caregiver, you have made the decision that the other person is worth caring for. Caring for someone with dementia means trying to keep them as much themselves as they once were, allowing them to connect with their previous selves as long as possible. (Short-term memory may be gone but basic knowledge and long-term memory often subsist to a good degree.) This requires that you gently push them to do things that they used to enjoy. New things will not stimulate them, they are merely frightening. When these patients say no to your proposals, you have to remember that it is not really that they are being negative, it is quite often that they don’t understand what is going to happen nor how else to express their fear. It isn’t really negativism, it just looks an awful lot like it.

I have adapted the way I speak to my mother:

– I don’t usually ask her whether she would like to go to the grocery store. Despite the fact that this is an activity that she enjoys (the only one where she is REALLY comfortable because she knows the store so well), she will try to procrastinate. I say rather: We need this or that, shall we go to Publix or Walmart? This is good because it focuses her thoughts (rather than her fears) on the activity and gives her the feeling that she is the one deciding, which is positive.

– I avoid proposing a choice of 3 things because she can definitely get lost. I noticed early on that when I offered her a choice of two things, she would usually choose the second. Obviously! It required less thought to say the last word she heard. So now, to balance out the two types of ice cream that we keep, I just change the order that I offer them in. Funny how it keeps our stock evenly balanced!

– I don’t propose going some place for no reason because my mother hasn’t forgotten how to ask Why? (since she doesn’t want to venture out anyway). Personally I think some of my excuses are pretty flimsy, but with no memory, my mother has trouble evaluating things and is willing to accept my notion of value, importance and urgency. With no sense of time and no memory, it is difficult to prioritize things or events. This allows me to get us out of the house to buy one skein of yarn for a baby blanket that I am going to make for my next grandchild due in 6 months!

Remembering that NO is more an expression of fear or lack of understanding than a negation, is a good way to learn how to circumvent problems. In the beginning, it may feel like lying or deception, but when you see what you can do with it, it can solve a lot of problems. The most important person in a caregiver/patient relationship is the caregiver, so give yourself a break whenever you can. The patient is certainly not going to remember your little falsehoods and you may even start to feel that you are getting a grip on the situation. Don’t let the NO defeat you, rather consider it a challenge!

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Source by Catherine Warner