As dementia progresses, a number of symptoms appear or become more prominent. In addition to memory loss we may also see aggression, passivity and withdrawal, and other personality or mood changes. This month Elder Voice focuses on one common, but less discussed symptom: confusion.
Confusion is defined in the dictionary as a “lack of understanding; uncertainty,” or “the state of being bewildered or unclear in one’s mind about something.” Confusion in dementia is the result of deterioration in different parts of the brain. As this occurs, the skills and abilities controlled by those areas of the brain are lost. These skills and abilities include the following:
- Planning
- Problem solving
- Judgment and insight
- Conceptualizing and abstract thinking
- Environmental manipulation and responsiveness
- Language ability, including understanding, initiating, and responding
- Recognizing people or places
- Understanding symbols
- Sensory processing
When facing a task or situation that calls for these skills, a person with dementia may not know what to do or how to respond.They may try, but not be able to be successful. For example, someone may try to dress themselves but put on several layers of shirts. We see what they are doing, and describe the behaviour as resulting from confusion.
Think for a moment about what it would be like if you were gradually less and less able to plan, solve problems, make sense of your environment, etc. Most of us would have a strong emotional reaction. We might feel frightened, ashamed, sad, hopeless or vulnerable.
So what would we do as we tried to function day to day? We might withdraw, get angry, depressed, or hit out at someone or something. Or we might freeze because we are unable to respond. We would behave in ways that make sense to us, but not to someone who didn’t understand what we were feeling. This is what often occurs in the life of someone with dementia. It is important to remember that they are trying, and what they are doing makes sense to them.
In the earlier stages of dementia, it may be possible through cognitive training, exercise, nutrition, and social interaction to slow the changes that are occurring. But as dementia progresses and we have less ability to function in a complex world, the focus needs to be on changing the environment and on making choices and tasks simpler.
There are many aspects to environment: where someone is, who is there, the objects in that environment, sensory stimulation through visual, aural, olfactory stimuli, energy in a room, time of day and more.There is also an internal environment of the body–the sensations from hunger, from the bladder, or that occur from external stimuli that the brain has to interpret and respond to.
Confusion and fear may also occur because of what is not in an environment. For instance, when someone moves, their familiar things are gone. They may not be able to find the washroom or bed, or recognize them when they do. If they are dependent on one person, and that person is not around, they are less secure.
We can modify environments in many ways–changing colours, heat, people, and space. We can also choose what kind of environment we put someone in, for instance high vs. low stimulation. We can make environments and tasks simpler by taking out steps in a sequential task or presenting one step at a time (getting dressed for example). We can limit choices to two or make informed choices for someone, based on our knowledge and history of them. We can use simpler words or always explain who we are and what we are doing. We can give many small snacks and provide pleasant smells when someone isn’t able to recognize they are hungry. Or we can explain things in a way that may feel to us like lying, but that serve to help make sense of a world for someone with diminished ability for understanding.
As we modify environments confusion may subside. The person’s sense of safety and competency can increase. They potentially feel less fear and less vulnerable, leading to a decrease in (or the avoidance of) aggression, agitation, or withdrawal, and they may become more able to perform tasks.
What we always need to ask ourselves as we are trying to help someone with confusion is, “What would this be like for me? What would I be feeling if I were in this situation?” And most important, “what would make it easier for me?”
* Sensory processing problems occur when stimuli from the environment or from the body is received (e.g. one hears or feels something) but is unable to process it correctly.
Mrs. T.: Confusion in the Dining Room
Mrs. T. is in her early 70’s and has lived in a nursing home for several years, due to early onset dementia. During her annual care conference, the nurse told us she was not eating well and had started to lose weight.
It would have been easy to blame Mrs. T.’s changes in eating and subsequent weight loss on the progression of her illness, with little that could be done. That is often the case.
However, changes in behaviour or personality, especially ones that occur suddenly or seem to have a fairly rapid onset, should always entail a thorough and interdisciplinary investigation to rule out issues that may be treatable.This is true not only for confusion, but also for aggression, mobility, eating (as with Mrs.T.), and others. Caregivers trying to problem solve need to be keen observers, looking for patterns and using their knowledge of the person they are caring for to try to understand the changes. The doctor should also be consulted to do the appropriate tests. Questions to ask include:
- Is there an infection or illness of some type?
- Is there pain?
- Is there fear?
- Is there constipation?
- Is there a sleep disturbance?
- Is there a medication related issue?
- Is there depression?
- Is there a change in related abilities or senses, such as changes in hearing, sight, taste?
- Is there a change in a social or physical environment?
Investigations should also always focus on the specifics of the particular behaviour. For example, for Mrs. T., we also asked about issues related to eating:
- Did she have a sore or other problem in her mouth, with her teeth or gums?
- Was there a swallowing problem?
- Was there a medication which was affecting her taste?
- Were there other recent changes for instance of her table, of people at her table, of times for meals, or people serving her?
- What was happening before she went into the dining room?
A few days after the care conference, we came to the Home to watch Mrs. T. during dinner. As the doors to the dining room opened, she moved in with the rush. The dining room felt electric with noise, people pushing, walkers and wheels all over in a crowded space. She stood inside the doorway, as though she were frozen with confusion, until the nurse directed her to her table. At her four person table, she looked around at the places and hesitated, moving around the table. We showed her her seat. She sat down and we sat down with her. Seeing several dessert dishes full of fruit, she started moving them from place to place and then started picking up and putting down and moving around the silverware. When the soup was delivered, she hesitated. When we took away the dessert so that she had only one dish of food, she started picking up and putting down the utensils again. We removed the fork, the knife, and the teaspoon. She picked up the soup spoon and began to eat her soup.
This is a very simple but clear illustration of how we can increase the quality of life and competency of someone with dementia by focusing on understanding and making changes in tasks or environment. We saw she was confused by too many choices and too much stimulation. She could not plan. We oriented her in the room. We decreased stimulation–fewer dishes to distract her. One utensil to pick up so there were fewer choices. Further changes could be made by modifying the dining room or her experience in it.
