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Dementia Care: A Basic ‘Primer’ on the Symptoms of Dementia
Last week we began to look at some of the biological aspects of a dementia. In particular we singled out the primary dementias and looked at memory; memory systems and the processes by which memories are made – and lost. This week we look at some of the other distinguishing features of the primary dementias. We consider some of the other most prominent effects of dementia related to my observation last time that the assumption of many people, including that of some paid professionals, is that the only ‘symptom’ of a primary dementia, such as Alzheimer’s disease, is memory loss.
Every person living with a dementia is unique
Dementia itself is not an illness or any one specific disease process, rather it is a term used to describe a collection of related diseases and pathologies. When different, although potentially related, disease processes lead to a similar end result, a term is used ‘clinically’ to group this broad pattern of symptoms, and this ‘grouping’ is referred to as a syndrome.
‘A syndrome is a collection of signs and symptoms that can be commonly grouped together and are recognised as producing a similar outcome even if the causes may be different.’
Therefore, for ease of understanding, we can state:
‘Dementia is a term used medically to describe a collection of various conditions or disease processes, which produce similar signs and symptoms to each other and therefore are referred to collectively as the dementias.’
There are well over 140 different types of dementia, and it is probable more will come to light in the next decade. The general public, however, commonly believe that when any reference to ‘dementia’ is made, we are referring to someone living with Alzheimer’s disease, but often we are not.
Alzheimer’s disease is, however, the most common form of dementia and accounts for about 55-62% of all probable cases. However, thanks to Kitwood, Stokes, Sabbatt and other pioneers, we know that the physical changes are only one aspects of ‘dementia’, and these are accompanied by changes to a person’s psychology and social situation. Because each person has a unique history, DNA pattern and personality, the way each individual experiences the process of dementia is different.
In my simple understanding this means that if, as the Alzheimer’s Society’s 2011 statistics are to be believed, there are 850,000 people in the UK living with a dementia, then there are 850,000 different dementias requiring care and consideration.
Commonalities of signs and symptoms
There are a number of distinctive diseases within the ‘dementia’ groupings. These include quite distinctive processes such as Alzheimer’s Disease, multi-infarct dementia and Lewy body type dementia, but there are also much rarer causes of dementia such as Korsakoff’s, Creutzfeldt-Jacob, Binswanger’s and Pick’s disease.
You will, in most likelihood, find yourself caring for much less exotic sounding, but much more familiar processes resulting from common medical conditions such as vascular dementia, multi-infarct type dementia, or those dementias resulting from complications from physical illness such as diabetes. You will, of course, meet a lot of people living with dementia of the Alzheimer’s type or mixed Alzheimer and vascular dementia.
There are some ‘common’ features that will be helpful for you to be aware of so as to guide your caring and your care planning . Care planning should show facilitative and compensatory features for each of the following ‘common’ symptoms, and not just be geared around an understanding of ‘memory loss’. We will, however, start this week’s blog with a recap of memory loss and provide a few examples. We will then look at the other predominant features of the primary dementia symptoms.
Loss of memory – in the early stages of most dementias, but not all, short-term memory systems become decayed and then are almost completely destroyed. Later, entire processes for the storage and retrieval of memory are damaged wherever they reside in the brain.
Long-term memory begins to dominate the process of retrieval when short-term memories are difficult to consolidate and locate. As the dementia progresses even the long-term memory stores will be eroded and the person begins to experience life with a system of memory described simply, but beautifully, by Dr Huub Buijssen as Roll-Back memory (Buijssen, 2003).
This is an extremely distressing and frightening experience for all concerned. On a psychological and socially interactive basis we must remember that much of who we are, our personality, our method of interpreting the world and our place within it, is determined by our memories. If you forget who and what you are, just what is your place in society and just how do you communicate this to others?
Gemma Jones (2005) has used the bookcase analogy to explain the breakdown of memory systems. This is now a feature of the Alzheimer’s Society’s Dementia Friends program and is being used to alert thousands of unpaid volunteers as to the effects of memory loss.
Below I will attempt to summarise and explore this analogy for you.
Your memory is likened to a bookcase where, when all is well, the books are labelled and in order, their covers are visible, and when you want a book you can locate is easily within your ordered storage system.
Imagine that I am an 80 year old woman. There is a full bookcase beside me, as tall as me. Each book represents a memory or a skill
- Top shelf - very recent.
- Middle shelf - my 60s - is by my shoulders.
- My 20s are on shelves by my knees.
- My childhood is at my feet.
Dementia rocks my bookcase side to side and my books fall off, top shelf first. As dementia progresses my upper shelves will become empty or sparse, with the odd, disordered book within my grasp, but what I begin to think of as my most recent memories (my former top shelf) will begin to come from further down the bookcase.
If my top few shelves are empty, save for a few jumbled editions, I might find my retrieved memories coming more and more from my life in the 1950s. When an association in my present requires me to use my memory to appropriately respond, I may respond as I would have done then and react to you as if you are there with me.
Does it matter if this is my reality, that I don’t know the date or the PM’s name?
You must embrace my reality as I am experiencing it to effectively communicate with me - here and now. This is one of the skills for dementia care. (Validation theory, although a little self-contradictory, will help you understand the many, many techniques and mind sets that will allow you to become very good at stepping into the shoes of those you care for.)
Until you view it through someone else’s eyes you have no inkling of their world. Good dementia care starts from understanding the world through the person’s worried eyes.
Different parts of the brain are affected differently as they have different functions
- Manages factual and biographical data (faces, names, dates, numbers)
- Picture a bookcase made from plywood, poorly constructed
- Dementia will make it move a lot, books will fly off
- Manages emotions and feelings – the things that make me who I am
- Picture a bookcase made from solid oak
- Contents will be safe from dementia for longer
For every book on my hippocampus there will be a corresponding book on my amygdala. (Hippocampus: a teacher I had in school. Amygdala: how inspired he made me feel.)
But remember our early explorations of stress in dementia. You know that when the amygdala and associated regions become dominant, stress and stress reactions can, and do, begin to dominate and colour the person’s experiences.
- You’ve been to visit me and we had a very difficult time. You go away thinking it doesn’t matter because I will forget about it.
I may forget the argument, and even your visit, but what will stay with me are feelings of sadness, hurt, and humiliation.
- You’ve been to visit me, we had a lovely time but I called you by the wrong name. You think you shouldn’t assume this visit was any more significant than your first ‘difficult’ visit because I won’t remember.
I may not know your name, but what I will remember from your visit are feelings of love, comfort, safety, warmth.
Buijssen (2003) tells us that recent memory does not just simply disappear, as we demonstrated last week. A person does not simply now live in the 1940s but, as some books are still on the top shelf and as more shaking occurs to the book case, structures collapse in stages and sometimes we can retrieve items on different shelves at most unexpected times. Sometimes we can grasp the favourite book, sometimes the least favourite, and sometimes the two will be mixed, as if we are reading from two or three books at once.
You see a face, you know it’s your carer, but it now seems to be your husband, your daughter. You had a lovely breakfast together. No, he died – this morning!
No, wait a moment, you are being offered a cup of tea – but where is my daughter? She was just here with her cup of tea just a moment ago. Who are you, where is my husband? He died – just this morning. Where am I? Where is my…? And now the stress and fear rises.
Learn the above lessons well as there will be times when you must become the person’s memory. You can only do this by knowing them, their life history, their life story, their personality and their wants, wishes and hopes. For the past six months I have been introducing you to this way of thinking. I hope my meanderings are now making more sense to you?
Mood changes – parts of the brain responsible for controlling and regulating personality and mood are affected by the dementia process and therefore much control over the emotions can be lost. Moods and reactions can become heightened or seem inappropriate to current situations.
Much of how we as people relate to each other - and how a person living with a dementia will relate to us - is in their reading of and interpretation of our moods. This is coloured by their knowledge of our personality, which is in itself made up from our own memories and our collective response to new stimuli activating our ‘remembered’ internal interpretation.
This is one of the reasons you must give of yourself in dementia caring – good dementia care cannot be a one way relationship. For the person to know how to respond, they must have some idea also of ‘who’ they are responding to,
When our frontal lobes, which is where our personality and higher cognitive features are seated, are disrupted by the damage from DAT, their role in dampening down emotional reactions from our older brain regions like the amygdala and hippocampus, which are the seat of emotions, fails, or at least becomes less effective.
The simplest and most emotive description of the human brain is Paul MacLean’s triune brain (1990). He uses a metaphor for how the brain works: you will know this is not the actual way a brain is constructed, but, as with all metaphors, there is some evolutionary ‘truth’ at the base of his model.
A ‘brain’ metaphor
MacLean proposed that our head holds not one brain, but three, each representing a distinct evolutionary stratum. The ‘triune model’ as the name suggests, presents the brain as just these three interconnected regions: the neocortex, the limbic system, and the reptilian brain.
He proposes that each layer of the brain has formed upon the older layer as we have evolved as human beings over millennia.
The theory, although purely hypothetical, does fit very closely with the evolutionary theories of the brain and in particular with evolutionary explanations for our senses
MacLean says that ‘three brains’ operate like ‘three interconnected biological computers’, and each has its own special intelligence, subjectivity, sense of time and space, and its own memory.
These ‘three brains’ are labelled as if they developed as part of our species’ evolutionary journey from the reptile, through the early mammals, and into modern humans.
Each of the three brains is connected by nerves to the other two, but, according to MacLean, each seems to operate as its own brain system with distinct capacities.
This hypothesis has become very influential. It had previously been assumed that the latest additions to the brain in evolutionary terms, and the highest functioning in terms of cognition, the outer (neo) cortex, dominated the older and lower levels.
But, MacLean hypothesised (and now modern neuro-imaging technology has shown), that this is not the case, and that the evolutionarily older limbic system, which rules emotions, can hijack the higher mental functions when it needs to.
Recent research also shows us that the limbic system’s early response to threat, or perception of threat, fires up significantly faster than the higher order cognitive ‘damping’ mechanisms of reason and rationality. We have shown in previous blogs that, due to this mechanism, stress and stress reactions are an incredibly neglected, but significant feature of dementia and in providing dementia care.
The limbic system
The limbic system, the primary seat of emotion, attention and memory retention, contains the structures of the hypothalamus, hippocampus and amygdala.
These structures working together help determine valence (whether you feel positive or negative towards something) and salience (what gets your attention). They also contribute to flexibility, unpredictability, and creative behaviour.
This area, with its upward interconnections with the cortex, ensures that brain functions are never either purely limbic or purely cortical but a mixture of both. As dementia begins its pathway through the brain, the way a person experiences life begins to change and their emotional control will lesson - the person becomes highly vulnerable to stress.
Communication difficulties – areas affecting production of speech, reception of speech and in reading and writing are all affected and these decline dependant on the degree and areas of progressive damage.
When communication becomes damaged the essential bridge between us and the world and between us and others becomes problematic. Communication is a two way process; when the sender or the receiver loses the shared ‘code’ life becomes very difficult indeed.
Mood, which is the colouring attached to thoughts and perceptions and our understanding of the world around us, often dictates our responses. It is highly affected by dementia and its disruption, and, in tandem with memory loss, becomes a primary feature or symptom, as dementia progresses.
Movement problems and coordination – as the dementia process develops areas in the brain responsible for basic life functions become affected and the earliest of these occur with balance and moving.
Falls are common and judging distances is often a major factor in falls and accidents – a person sees something in one place and in reality the object is elsewhere or the contrast of objects against each other is not sufficient for the person to judge their position in relation to the objects concerned.
Overbalancing, overcompensating and increasing frailty also play major factors. The inability to co-ordinate limbs can lead to much more than falls and it can lead to an inability to dress appropriately or even to self-feed and drink.
Some forms of dementia, especially Lewy Body type, have a strong relationship with Parkinson’s type disease, and falls are symptomatic of this highly prevalent but little understood dementia.
Hallucinations, across all senses; a high tendency for depression; and a hyper-sensitivity to certain medications – especially antipsychotic medications - are also further features of this particular dementia.
These then are the three most common symptoms which feature across the primary dementias. Gain knowledge of them, understand them and plan your care around facilitative or compensatory responses to the needs of the person.
There are of course many other features and symptoms associated with the various dementias, too many and too complex for this blog to cover. However, as a primer, and as I leave you this week, I present a simple list of some of the areas you should understand and become proficient in caring for as you continue your journey towards delivering excellent dementia caring.
Clinical features related to the symptoms of dementia
- Amnesia: loss of memory.
- Aphasia: impairment of language, most common on direct questioning, i.e. asking a person to name an object – a nominal aphasia.
- Apraxia: the inability to carry out actions despite intact sensory and motor function (notable as in an inability to dress).
- Agnosia: inability to recognise or to associate meaning to a sensory perception (inability to recognise an object).
- Executive dysfunction: disturbances in judgement, planning and abstraction.
Other neuropsychological impairments include:
- Acalculia: inability to perform arithmetic.
- Agraphia: inability to write.
- Alexia: inability to read.
Psychiatric symptoms and behavioural disturbances
- Hallucinations (visual, auditory etc.)
- Aggression (physical, verbal)
- Aberrant motor behaviour (pacing, wandering, restlessness)
- Sexual disinhibition
- Sleep abnormalities
- Increased appetite
- Change in eating habits.
Variation in symptoms
It is very common when working in dementia care, particularly if you are new to studying dementia, to assume that everything you read about symptoms, deficits and stages applies to everyone you meet living with dementia – it does not.
The dementias can differ markedly from each other. Even in similar syndromes, because of differing individual brain structures, the varying rate of progression, and the person’s individual personality and genes, not all expected symptoms are present.
Also, depending on the type of dementia or the location of damage to the brain following something like a stroke, great variance between individuals will occur.
We have also discussed across the last six months the different psychological responses that may be produced as a result of the social and built environment which may exaggerate any physical effects of the changes to the brain.
A simple principle is: see the person before the symptoms.
Sometimes if you look for the symptoms long enough and hard enough you will find them – even if they are not there!
Till next time.
Paul Smith – Dementia Care Expert