People who have dementia are often unaware of their impairments and refuse care. We call this condition anosognosia. I first encountered it when working in vocational rehabilitation with people who had traumatic brain injuries, and then again when I worked with the mentally ill, so I wasn’t surprised when many of my dementia clients exhibited it as well.
When I began working with people experiencing dementia, I found that someone might recognize one impairment, like forgetfulness, yet be completely unaware of something more dangerous, such as faulty judgment or poor attention span. One of the most extraordinary cases of anosognosia I’ve dealt with was a man who had no teeth but was unable to realize it. He would order steak and then be outraged that the restaurant had served him meat he could not chew.
One of the first assessments we do when taking on a new client is to evaluate whether and to what degree anosognosia is present. People who know they are cognitively impaired, or who recognize they are losing the ability to take care of themselves, are sad and fearful—a healthy response to realizing they are becoming less able to make sense of the world. For these people, being offered help eases their anxiety.
Other clients are aware that they need some help in some areas, but not all. They tend to think their families are overreacting and interfering. They may become paranoid or secretive as they attempt to hide their failings and retain the level of independence any normal adult expects to have. With these clients, we often begin by offering just transportation to do errands. We also assure them that we’ll help them stay as independent as possible.
By offering our support to help them preserve what they most desire—independence—we can gradually build a trusting relationship and unobtrusively provide assistance they can accept without sacrificing dignity or self-respect. We find that these people, with partial anosognosia, gradually accept more and more care.
But when someone is not aware at all of any cognitive impairment, we use what we call “caregiving by stealth.” In these cases, we introduce a caregiver as a friend who just happens to enjoy the same activities and just happened to be in the neighborhood about to run an errand that would be more fun with a companion.
In these cases, we ensure safety and provide for needs indirectly. We send in another caregiver while our client is out with his or her new friend, so we can keep the home clean and stocked with food. Without rational thought, it doesn’t occur to someone who has complete anosognosia to question such things as laundry that stays clean or a new friend that enjoys running errands with them.
The first step in designing dementia care is to be sure that assistance is being offered in a way that allows the care recipient to maintain dignity and a sense of control, so it’s important to take into consideration the possibility that anosognosia is present. When people cannot comprehend their own limitations, we shouldn’t expect them to make good decisions about needing care. It’s up to us to offer care in a manner they can accept. This is just another way we can be habilitative in our approach to dementia care.