Every accomplishment starts with the decision to try.
Quality of life can be measured by many different criteria. High on the list is one’s sense of independence. The losses that accompany a diagnosis of dementia are many, and they grow in number over the course of the disease. Even in the earlier stages, people with dementia may have to relinquish much of their independence when they can no longer drive. Other losses follow as they become more dependent on others.
↪ Think about all the things you are now free to do. Include such things as choosing what to watch on TV, going to bed and waking when you want to, choosing what to eat and what to wear. How about the ability to make choices in general?
As dementia progresses, losses occur rapidly. How the person perceives and adjusts to these losses affects his or her quality of life. Loss of independence can bring on feelings of frustration, uselessness, and a loss of control. Often depression follows, and the rate of decline increases even more. As caregivers, we have the ability to change this by helping our residents to preserve their life skills and by fostering independence.
↪ Think about how the care you give changes when you are rushed.
Helping people with dementia to preserve their skills requires a little additional time. Unfortunately, caregivers feel the pressure of having a set amount of time for each person on their assignment. Often they wind up doing a task (such as dressing someone) themselves rather than guiding the person through it. Interestingly, there is not much more time needed to provide the type of care that foster’s independence, because doing so means people with dementia can do more for themselves for a longer period of time.
When a person stops doing things independently, it probably means that they have forgotten the steps needed to accomplish the task and don’t know where to start. Helping the person by breaking the task into smaller steps that they can manage on their own, preserves their ability to do it. For instance, if George is asked to brush his teeth, and has a hard time getting started, some simple directions might put him back on track. However, the caregiver must start at the beginning and guide him through each step.
One day I had my staff count the number of steps required to brush one’s teeth. Starting with unscrewing the cap on the toothpaste and ending with putting the toothbrush back into the holder, there are as many as 20 steps. It’s easy to understand how George may know what he needs to do, but not know the order in which to do it.
Aside from breaking tasks down, we should also help preserve independence by giving choices to people who are still able to make them. In the earlier stages of dementia, most people are still able to select their own clothes and decide what they would like to eat. But as the dementia progresses, the person gets confused by too many choices.
Using common sense dementia care means understanding this change and helping the person with dementia to continue to have a choice when possible. The woman who has a closet full of clothes will eventually become confused and frustrated at the task of finding something to wear. This can result in poor choices such as a dressy blouse with pajama bottoms. At this point, the caregiver should use what we call “guided choices” and help by laying out two complete outfits and letting the person choose between them.
As dementia progresses, however, this woman will eventually not be able to manage even this simple choice. Rather than taking over the choice of clothing completely, caregivers can still offer a choice of one item. People with dementia should be able to answer yes or no well into the later stages. By breaking tasks down and using guided choices, we are helping not only to preserve skills but also helping to maintain the resident’s dignity and quality of life.
Helping our patients maintain their independence means making sure that the person with dementia who uses hearing aids and glasses has access to them every day. We also need to be sure that treating physical health issues does not take a back seat to dementia care. Dental health, physical therapy for prevention or treatment of disabilities, and monitoring for and treating pain are also of major importance and can greatly enhance quality of life.