Dementia: What people lose and what they keep
If I knew then what I know now with regards to dementia, I think the relationship I had with my mother would have been very different. I had very limited information on the disease, and I was busy trying to run another company at the time. I was unaware of all the changes my mother was going through. As an example, I really did not know why she was not able to remember what she had for breakfast or lunch on a given day. Or why she remembered things differently then how they occurred, and you could not argue with her about it since she remembered it very clearly and it must have been me that was not remembering things correctly. So, since I was never really in the mood to argue, I would just let things go, little did I know that she was having memory issues. She was losing her short-term memory and having altered memories from reality.
Another thing that starts to change is ourselves. We have two sorts of selves. We have a remembering self and an experiential self. Our remembering selves are the part of us that uses our memory skills, our experiences, and memories from the past. Some are good and some are bad, but we remember our lives and some memories bring nostalgia and familiarity that allows us to reminisce with our family and friends. Our other self is our experiential self. Our experiential self is the part of us that takes in all the information around us through our senses. We never lose this sense of self, even with dementia. This is when you smile when you hear one of your favourite songs, you know when you are hungry, you jump at a loud sound. So, my mother with her dementia would be living in the present moment but would not be able to avoid the actual experience. She was always reacting to the stimuli without understanding why she reacted the way she did. Again, I did not realise what was happening, I just thought she was being difficult and strange. Again, had I understood the changes, things could have been different.
Another thing that is lost to dementia is rational thought, the skills that include being able to analyse and organise information, recognising differences and similarities in objects and concepts, and drawing conclusions. Medical science has told us that our loved ones with dementia lose such things as judgement, perception, and executive function. They also have a hard time with cause and effect, steps in a process or sequencing, prioritisation, and language skills. People will sometimes use what is referred to as word salad, several words spoken with no real combination or meaning. Sometimes, people with dementia will refer to a spoon as a fork and vice versa. It is up to the caregiver to decipher what it is the person is saying or feeling.
As caregivers, we cannot just focus on what has been lost from our loved one suffering from dementia, we need to focus on what they still posses and what they can still do. That is part of the positive approach to care, as well as gentle care and what is also referred to as habilitative care which has been written about since the early nineties. So let’s take a look at what we hang onto regardless of dementia. The first thing that is not lost, is our intuitive thought processes. Those are the processes that we use to take in information using all our senses. That feeling that something is not quite right, our instantaneous reaction to a loud noise, or fingernails on a chalkboard. Rational thought, the one that is lost, allows us to know that the loud noise may be a door slamming, so we block it out ourselves. The person with dementia only gets to react to the noise, they are incapable of rationalising where or what caused the noise. They just react. An individual with dementia can feel and not necessarily interpret their feelings in a comprehensive manner. It is quite possible to feel sadness and not be able to say “I feel sad” or have pain in their knee and not being able to express that they have pain in their knee. It is part of being an experiential being. Also, we react to beautiful things without knowing it, beauty feeds our souls, and we cannot not react to it, but rational thought allows us to ignore beautiful things, a person with dementia will be like a young child who sees a butterfly for the first time and enjoys its pure beauty- you will be able to see the world through innocent eyes. The other intuitive thought process has to do with receiving sensory feedback, though scent and taste are the first two to go, hearing is sometimes lost as is the ability to process what is being fed to our brains via the optic nerve. The ability to received sensory information through touch is indefinite. That is why touch is so important when caring for someone with dementia. We can always reach out and provide our loved one with a soft touch of their hand, or arm. Always let them know what you are going to do before you do it so as not to shock them. We all inherently have the fight or flight intuition that helps us navigate this world, this is true of those with dementia as well, a good caregiver will not engage this sense at all, rational thought is not in place and the outcomes could be difficult to manage. The final thing to be aware of, is the mindlessness that someone with dementia experiences, those of us with healthy brains can be mindful, we are able to focus on one thing at a time, carry on a conversation in a restaurant with a person and drown out all the background noise. A person with dementia does not have rational thought and goes towards automatic think scripts where they are doing things that they don’t have to think about to do, sort of like when we make coffee in the morning, we don’t have to play out the steps in our head, we just do them. An example of my mother was when she used to live in the retirement home she would leave her room and turn right to go and sit in the hallway to watch the people. When she moved to long term care, the nurses could not figure out why she ended up at the end of the hallway sitting on her walker when the main room was on the left side when she left her room. So she was on autopilot. She was doing the same thing that used to bring her comfort in her previous residence. I had to explain to them what was happening. This is also an example of muscle memory if you will. So she was always doing the same thing at the retirement home and when we changed her environment she went to what was familiar regardless of where she was. She could also not tell you where the bathroom was, but she knew enough to go to it for relief. She could not tell you the pathway there, or the necessary things she had to do to get there. She just went because that was where you go to the washroom. The washroom was always in the same place
So in a nutshell, if we are struck by dementia of any shape of form, we will lose our rational thought, our ability to remember self and our ability to mindful. We do not lose our intuitive thought, our experiential self, and we have mindlessness tools to help us cope with the world we are in.