How can I know who I am if I don’t remember what I’ve done?
Everyone has an idea of who they believe they are, but with dementia, this slowly fades away.
Our sense of identity is generally related to what we have experienced throughout our lives or what we are currently doing. The “self” is made up of our beliefs, our education, our successes and failures, as well as our personality and self-esteem.
When dementia erases memory, the experiences that shaped who we are are forgotten or become confused, and our recognition of relationships with others disintegrates.
Our self-perception is also influenced by how others see us. In childhood, the opinions of our peers affected our self-image and contributed to our individual development. In general, the most popular person in school has a high sense of self-worth, whereas a bullied child suffers from low self-esteem.
As adults, other people’s opinions continue to affect us. If we feel valued by others, we are more likely to have a positive self-image. The opposite could be true if people ignore us or don’t like us. When someone tries hard to be liked by others, they are often attempting to compensate for low self-esteem. A successful person is less affected by public opinion than someone who feels like a failure.
In people with dementia, self-esteem begins to erode with the first symptoms of memory loss. As forgetfulness increases and it becomes difficult to perform simple daily tasks, they often start to feel that they are foolish or incompetent. Their own negative self-image makes them fear that others will see them that way, so they often try to hide their symptoms. Later, when they can no longer hide it, their behavior may become difficult, with emotional outbursts, social withdrawal, or a fear of making decisions.
Aggressive behavior is often an attempt to maintain control. They are aware that something is wrong and don’t want anyone to know. Generally, they argue, resist, or refuse to do something for fear of making mistakes or embarrassing themselves. Their sense of self or of who they are begins to disintegrate, often followed by depression, which worsens the symptoms.
On the outside, it may seem that a person with dementia is still the same, but from the earliest stages, their self-awareness is deteriorating. They are losing control over who they believe they are, and that can be terrifying.
Interestingly, in child development, a baby discovers that they are a separate being when they first recognize that the image they see in the mirror is their own and not another baby. This is the beginning of self-awareness and eventually leads to what we call the “terrible twos” when they begin to insist on their independence.
Before this, they were not aware of their individuality among the things and people around them; they were simply an inseparable part of the whole. Self-awareness comes hand in hand with a sense of separation.
Conversely, when a person with dementia no longer recognizes their reflection in the mirror and thinks it’s someone else, they are in the process of losing themselves. As the condition progresses, the reverse of child development occurs: eventually, they will be unable to distinguish themselves as an individual in their surroundings. When they are exposed to loud noises or bright lights, they do not understand that what is creating their anxiety is something external. They feel it within, as if it were part of them, and they react automatically, usually with sensory overload.
Many caregivers complain that their loved one only cares about themselves. During dementia, the “self” becomes an undefined concept. The boundaries between you and them become blurry. It becomes increasingly difficult for the person with dementia to relate to anything external; everything is part of them and happens within them.
This merging of the “self” with everything around them also includes people. It may seem like they are unaware or don’t care about your feelings. But this is not always the case. Gradually, they lose their introspective ability as well as their ability to intellectually understand that what they are feeling are your emotions. They are unable to recognize what they are feeling or why they are feeling it. But that doesn’t mean they don’t feel your emotions. They internalize what you’re feeling as if it were their own and react, becoming reflections of your anger, frustration, sadness, or disdain. Or, on the other hand, of your kindness, happiness, joy, or love.
What can those who love them do? To start, stop correcting them; that only increases their feeling of being useless and leads to a defensive attitude that often turns into anger. Praise them for what they can still do and for what they are capable of. Talk about their past achievements, remind them of who they are, and look through photo albums together, recounting the stories behind the pictures. I suggest not saying, “Remember…,” because they may not be able to remember; simply tell the anecdotes and stories as you remember them. Do everything you can to help them recover or retain the feeling of still being themselves.
Try not to judge their outward behavior. In dementia, what you see is not necessarily what’s happening inside. Don’t take apparent indifference or lack of empathy as a fact. Unless you’ve put yourself in the shoes of someone suffering from dementia, it’s unlikely you’re interpreting the situation as it really is. Most importantly, don’t take anything personally.
They aren’t giving you a hard time; they are living a hard time.
Katya De Luisa resides in Costa Rica and is a dementia educator/consultant, freelance writer, and author of “Journey through the Infinite Mind: The Science and Spirituality of Dementia.” www.dementialearninginstitute.com
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