Yesterday, I was sat in a waiting room where the TV was showing the Prime ministers’ questions. Mr Johnson said something that immediately drew my attention…” whether they have Alzheimer’s OR dementia” …Incorrect I thought to myself. Alzheimer’s IS dementia. He should have said Alzheimer’s or any other form of dementia. Was our Prime minister misinformed, ignorant or was it just that he had incorrectly phrased what he said?
Chances are, you’ve heard of dementia. Maybe you know someone personally who has lived with it. Perhaps that person was someone you love(d). Yet, despite the growing impact dementia is having on our society, there remains so much misunderstanding of the disease and its many myths.
Understanding Dementia can be difficult, mostly because those who are affected by the disease are all unique individuals, with their own life stories, preferences, like, dislikes, values, and experiences that will impact of their story. Additionally, symptoms are also going to vary depending on what type of dementia the individual has and how long they have had it for.
Let’s get down to facts…
Dementia is simply an umbrella term of a type of brain disease, perhaps a more controversial term to explain it, but ultimately that is what it is. There are 106 types of dementia which all affect the brain in different ways, however, Alzheimer’s is far the most commonest form, making up for about 70% of all sufferers.
Dementia is NOT a normal part of ageing and is NOT limited to the older generation. I can recall when I was 19 years old, as a student nurse, caring for a woman in her 40’s with a form of dementia. This form had a quick progression, meaning that within a year she had lost the ability to walk, talk and eat. It was soul destroying to watch her two daughters, similar age to myself at the time, come to visit her. The youngest of the two, a high school student, broke down in tears almost each time she came, whereas the oldest tried to be the strength of this troubled family. That could have easily been my own mum.
The devastating truth is anyone can develop dementia, its linked closely to our genetics and lifestyle choices. Some forms of Dementia, such as Alzheimer’s, have an increase in risk of developing the disease as we age. This is a significant concern in an aging population.
There is currently no cure for dementia, mostly because the cause is poorly understood. In my early nursing days, I was taught it was down to changes in the brain, however, more recent research has found the same changes can occur in the brains of those without dementia. There are treatments available on the market, which are generally limited to a group of drugs called “anticholinesterase inhibitors” you may have heard of Donepezil and Rivastigmine, which fall into that family. The downside of this medication is that you need to remember to take it each day, which is difficult in a disease that impacts on memory, but also it is only going to be effective in mild Alzheimer’s, it works by helping slow down the progression. This leaves other dementias and for those who were diagnosed too late without treatment, an issue that current research is trying to tackle.
As I have mentioned, and likely you are aware if you have knowledge of demenits, that memory is heavily associated with the condition. You may have also heard of terms such as “short term” and “long term” memory, but this is a rather simplistic view of memory loss. We have various areas of memory stored in our brains, specific to the type of memory being stored. Dementia does not take all that memory. For example, our procedural memory is our “how to knowledge”, think about when you go to the toilet, or brush your teeth each morning, we do this on autopilot. There is no one standing over us giving step by step instructions, because as a child we learnt how to perform these activities, this was then stored in our brain and now we just do it without much thought.
In dementia, the procedural memory is often impacted, which means those activities that were once simply done, become increasingly difficult. This would be the equivalent of having a task to perform with half of the instructions available, or none at all.
Semantic memory is where we find our meanings or understandings for life, this will be made up of various experiences acquired in school, our career, the rules and regulations of society, general knowledge, hobbies, and passions. This ability to apply meaning and understanding is what aids us in being logical and provides us with capacity to make decisions. Dementia destroys procedural and semantic memories; this is often a gradual process over time, meaning that those living with dementia are aware that this process is happening.
Our episodic memory is mainly accessed through a part of the brain called the hippocampus, and in some part, this is relatively reserved in dementia, allowing that person to shift back to another period in their life. Primarily, for whatever reason, those living with moderate dementias will return to somewhere between 10-30 years of age, and we term this the “reminiscence bump”. Everyone is different, they may find themselves somewhere outside of that 20-year timeframe, regardless it is real to them.
I remember caring for a 93 year old recently, who recalled her recent retirement, that had in fact been nearly 40 years earlier.
This means that the rest of their lives becomes a kind of twilight, as if they have not lived that life yet. You may have observed this if you have known someone with dementia , an older person living with dementia, who does not recognise their own child, a heart-breaking experience to watch. This is simply because in their mind they are living as the 20-something version of themselves, and that child may not be born yet, or is certainly cannot be of the age that they actually are. You cannot bring them back to reality because they are stuck in their own reality where they are trying to make sense of that world around them. To try and orientate them is a messy thing, it causes fear, anxiety, and confusion.
The person with Dementia may confabulate stories, this may be where the brain has used older memories to plug a gap in more recent memories, creating an explanation or a situation that has a sense of reality for the person telling the story (confabulation). I often have conversations with those living with dementia talking about having spent the day with a relative you know to be dead, and there is no way that this could have happened. This occurs when the person has no recollection of what has just happened and uses memories to create context; its not that they are lying to you, this is them trying to make sense of the reality they find themselves in.
The most significant characteristic that is relevant to all dementias is communication difficulties – to lose ability to communicate and to understand is a tragic loss. Some people lose verbal communication, this is true of Alzheimer’s, words start to escape them, gradually at first, and then as they progress into more severe stages, where they will be reduced to repeating 1 or 2 words. Therefore, you will find that often they are repeating the same words over and over, or words that you can’t make sense of, or even they will forget what they are saying mid-sentence. In Vascular dementia, another type of dementia, the person tends to retain words but lose understanding of visual communication, the nonverbal communication, which means they lose the ability to read facial expressions, or body language. (everyone and everything will become a threat)
Once those living with dementia have lost the ability to use language to communicate, behaviour becomes a powerful form of expressing needs and feelings. When they have lost the ability to express themselves in a rationale manner, that the people around them will understand, it must make one feel vulnerable and be frustrating ,imagine how isolated and lost you would be to the outside world. When those feelings are not acknowledged by others, then it is likely those behaviours can then intensify, and we, the outside world, will deem these behaviours “challenging” or “disturbing”, so instead of responding in a way that acknowledges the attempt to communicate, that the person feels valued and listened to, we may respond negatively.
There are many other common symptoms and others less common that are specific to types of dementia or even to individuals. The most important thing to remember, in my opinion, is that those living with dementia, may not be in our reality, and rather live in their own version. They are trying to make sense of a world that the brain is no longer aiding them to do. They need to find understanding, compassion, and a sense of being acknowledged by those of us who are not experiencing this cruel disease. This becomes difficult, especially when we lack understanding of dementia, how do we adapt our own approach if we do not understand what is required of us? The more we understand, and the more we can share our knowledge with others, it is more likely that the needs of those living with dementia will be met successfully and any potential distress avoided.
Growing Nurses 