By Jane Verity ©dementiacareinternational.com
Dementia symptoms are often grouped in ‘stages’ – here we refer to 4 different stages. These stages should only serve as guides though as each person responds differently to their particular symptoms, and stages can fluctuate and overlap. A person may show symptoms common to the early stage one minute and those common to middle or late stage the next. These variations can be very much dependent on whether the person is experiencing an underlying physical condition or the lack of genuine respect and appreciation.
Though a person may appear muddled one particular day – or in the morning or afternoon – this doesn’t mean that the person is ‘locked’ at that point or has moved on to the next stage. It only means that this is where he or she is at that particular moment and this may change and the person may revert to being quite clear again.
The definitions we use here for the 4 stages are expressed from the point of view of social psychology; and are different from those of the medical model, which focuses mainly on the deterioration occurring in the brain. (Note: Research has shown that there is little correlation between the severity of brain damage and how it actually affects a person with dementia.)
We can all be forgetful at times. Who hasn’t gone to another room and arrived to wonder what they were doing there? Who hasn’t forgotten what day it is momentarily, especially when on holidays? Who hasn’t misplaced their car keys on occasions? The difference for the person with dementia is that he or she may find the keys but not know what to do with them
In the first stage, people with dementia begin to experience that something is not right – ‘The old memory is playing up.’ They may feel embarrassed or frightened when they recognize changes in their memory or thinking. Family and friends begin to question and comment on the changes and forgetfulness. The person is likely to fight to keep up the façade of ‘normality’ and being in control. They might do things, such as making up a little story to fill the memory gap of someone or something they can’t remember. Professionals label this gap filling as ‘confabulation’. However, this ‘story’ telling or gap filling does not mean that the person is telling a lie. It is actually a creative, self-defence mechanism that helps the person to keep up the façade. It will help supportive partners and ‘carers’ to understand if they can imagine it in this way too.
The person may express anger or annoyance to direct questions requiring memory or thinking skills. A seemingly simple question, such as: ‘Where were you born?’ may elicit a snappy, ‘That’s none of your business!’
Also, the person might blame others for his or her memory lapses.
Lydia cannot find her glasses. She asks her husband, Eric, ‘Have you seen my glasses?’ Eric recalls seeing them earlier in the bedroom, and says, ‘Have a look on the bedside table. I think you put them there.’ Lydia is not going to admit that she might have put the glasses there herself and forgotten; so she says, ‘Well, you must have put them there, because I didn’t.’
This type of response is easy to take as an accusation, but it is not. It is simply the person fighting to hold on to a small piece of control and to keep up the façade.
Sometimes the person in this first stage can drive family and friends wild wanting to check and recheck everything. Paul may ask, ‘Is it today that my son is coming?’ ‘What is the time?’ ‘Is today Monday?’ He checks again and again, until patience frays and frustration builds. It is important to remember that Paul is not doing this to annoy you; he is simply trying to reassure himself that he is in control.
People in this early stage seem to use every opportunity to exercise the control they feel they are losing.
When Mary says, ‘Mum, we are going out at 3 o’clock,’ and they have not left by 10 past 3, Mum may pull her up. ‘You said we were leaving at 3, and it’s 10 past 3!’
Mum is not trying to challenge Mary; she is simply trying to show that she remembers that they had a different arrangement.
In this first stage, people with dementia generally use much the same language as most people do. They might forget a word, a phrase or a memory and then create a little story to fill the memory gap. Sometimes they may also appear vague in the way they communicate.
Instead of Stan saying, ‘Please give me the cup,’ he forgets the word cup and (while pointing at it) might say, ‘Please give me that one.’
He might use vague phrases such as, ‘Something has happened’, or, ‘Something is not right.’
These are just two examples of the wonderful way people with dementia compensate for missing memories.
Or they may try to get us to create multiple-choice questions so they only have to answer one of them, and, in that way, we jog their memory too. For example you might ask Stan, ‘Where have you been?’ his response might be, ‘Oh, you know where.’
Note: It is far easier for people with dementia to recognise situations that are described to them rather than to remember something out-of-the-blue.
In the second stage, people with dementia are far more relaxed and inclined to give in and let go. They may start to withdraw and appear to become preoccupied with the past, thinking back to happy times, restoring old memories and sometimes living in that time and reality. Their way of communicating may change too. Sentence construction may not be as clear. They might start a sentence, and it make perfect sense; but then it becomes muddled in the middle and ends as ‘gobbledegook’, which is hard to understand.
If they can’t remember a word, they might create one. Often the words will be familiar, only now put together in an innovative way creating a poetic new word or phrase. Here is a great personal example of how this can occur.
One day we were out driving. Suddenly, Mum pointed out of the window and said, ‘Look at that beautiful water nest.’ I looked across at the dam in the paddock and thought, ‘What is she talking about?’ Then I realised. Mum couldn’t remember the word for dam, so, instead, she’d said, ‘water nest.’ A far more beautiful word picture than dam!
Another time, she said, ‘I can’t find my rain stick’. I did have to wonder for a moment about this rain stick? Of course, Mum meant her umbrella.
Once we work out the intended meaning, it can seem so obvious.
People who have dementia develop their own wonderful language. Each person is unique and so will develop an individual style of language that those closest to them will learn to understand. A close family member may even get to a point where he or she doesn’t even think of it as different.
In the second stage, the person may start to mix up relationships and generations, such as Emily believing her son to be her deceased husband, or Ray believing his niece is his sister.
The person may start to address you by a different name. Just because you are addressed in this way for a short time does not mean it will last forever. It may only be that the person is preoccupied, for the moment, in thinking about Mum or Dad. So, when you appear, you may temporarily become Mum or Dad.
In this stage, the person may still be able to do many things, but might become sidetracked when starting on something new.
Evelyn pulls out a drawer to put something away. Once the drawer is open, she is inspired by what she sees inside and forgets what she came to do. Instead, she begins to empty the contents.
John may begin to set the table using the correct movements; but once he spreads out the tablecloth, he forgets what he is doing. Suddenly, re-inspired, he begins to fold the cloth up again and puts it away.
Some of these actions can be frustrating, but they are easier to understand when we know that the person is not deliberately trying to frustrate or irritate; it is simply that he or she sets out to do the one thing, and then gets distracted.
In the third stage, people with dementia start to withdraw even further into the past and become so preoccupied with their memories that they ‘live’ almost entirely in that time and reality.
They may also start to wander. When this happens, it is important to know that there is usually a valid reason. Either the person is looking for something or someone, or is trying to prevent boredom.
The person may also start expressing needs, wants and feelings increasingly through body language – using gestures and actions. For example: Some may sit picking minute fluff-balls off clothing, wringing their hands, or appear to be kneading dough or mending clothes. These are ways of going back into the past and recreating a time when they felt needed, useful and special. Often these positive experiences are missing for them in this reality. These movements do have purpose, even if they might seem strange to us.
Language, at this stage, may consist mainly of one-syllable words, such as ‘Yes’ and ‘No’, interspersed with only a key word. This key word might be a noun or a verb, but is always something that has particular meaning and that we can take note of to help us understand what is being talked about.
We can maintain communication with people who have dementia in all stages.
The person may become incontinent in the third stage, but, remember, this may not necessarily happen.
In the fourth stage, people with dementia may completely shut out the outside world. They might sit in a chair or lie in bed staring straight into thin air, or they might have their eyes closed. They may not respond when someone walks into the room or speaks to them.
Today, we know that the person at this stage still hears and experiences through touch, and it is extremely important that we continue to talk with them and still make physical contact.
Further reading – Click topic
- What is Dementia? – Public Article – (Discover the difference between dementia & Alzheimer’s disease; the many curable & incurable conditions resulting in symptoms of dementia; early signs; why there is hope; & how we can make a difference towards a positive life for both the people we support & ourselves.)
- 3 Powerful Myths about Dementia – Members article– (We dispel 3 powerful and harmful myths about dementia. Discover the one thing people with dementia & children do have in common; helpful tips to find out what they do like/need plus learn the 5 points critical to storing long term memories.)
- How to Help People with Dementia Improve – Public/Extended Members article – Jane Verity (Learn the first step to assisting a person with dementia to improve; how our focus determines the experience; discover how beliefs are maintained; learn how our brain operates a clever filtering system plus more on NLP.)
- The Nun Study – Public/Members article – Jane Verity (Read of Dr. David Snowdon’s amazing research findings showing that some of the participating nuns revealed brains riddled with the plaques & tangles of Alzheimer’s disease, yet showed no symptoms of dementia while alive.)
- How to Communicate with Someone who Can’t Speak – Public/Members article– Jane Verity (Learn 4 body language techniques to show people with dementia that you are really listening; learn strategies & effective questions to uncover unmet needs; learn question techniques to check on your guesses & 6 steps to being a good communicator.)
- How can Aromatherapy Help People with Dementia? – Members article – E. Joy Bowles BSc. (How the ‘sense of smell is non-verbal & can get through to emotions when words fail’; the use of smells can help orient people with dementia to time & space; tips for choosing & using the right oils to lessen anxiety, agitation & depression.)
- Gingko Biloba – Members article – Dr Ruth Cilento – (The many healing properties of Gingko Biloba; its positive effects on memory & learning abilities & for arresting symptoms of dementia.)