About Dementia
This page is dedicated to facts & fears surrounding dementia. These facts are based on information that is out there in the public domain. Further information can be found on the Alzheimers Society and Alzheimer’s Research website. Please see links below:
https://www.alzheimers.org.uk/sites/default/files/2022-05/HS1-what-is-dementia.pdf
What is dementia?
Facts about Dementia
In the UK,
- 1 in 3 people will be living with dementia at some point in their life
- There are estimated to be 1,000,000 currently living with dementia
- the number of deaths caused by dementia now surpasses cancer and heart disease
Globally,
- there is no cure for dementia as at now
- there are drugs on the market that are offered by the NHS (in the UK) that slow down the progression of dementia
- Alzheimers is the most common type of dementia but there are others including Vascular, Lewy-Body & Frontotemporal
Articles that discuss dementia retrieved from the internet:
https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/
General Dementia Symptoms
Here I describe some of the general symptoms associated with dementia. In my story I provides further detail in the context of my mother’s journey and how they affected both our lives, individually and collectively. Many family members are often unaware of the symptoms and assume that they are symptoms of ‘old age’. My aim is to create awareness of these symptoms, so that others may recognise them in their loved one’s behaviours and hopefully take action. I should also mention at this point that, whilst I’ve used terminology from the Alzheimer’s Society website, the write up is from my own personal perspective and comprises of my experience and opinion only.
According to the Alzheimer’s Society website, ‘dementia’ is a group of symptoms that demonstrate changes in the brain due to disease so that it no longer works properly. They may include some or all, of the following:
- loss of memory
- difficulty with planning tasks and making decisions
- problems with speech and conversation
- confusion with time and place
- seeing/perceiving things differently and
- changes in behaviour and mood.
The Dementia Stages
There are various models that define the stages of dementia; the 3, 5 and 7 stages. I’m accustomed to the 3-stage model (early, middle and late) as that was how my mother’s journey was described to me. In the reference section of this website, (ADD IN link to table here) I have provided a table of the 3 models comparing the different stages and how they relate to one another. I believe that the 5 and 7 stage models are predominantly used in North America and the 3-stage model in the UK, but that is based purely on my own opinion/perspective.
At the time of diagnosis, my mother was at the early stage and moved into the middle stage just before she passed away. I came to this conclusion based on the fact, that she still recognised me and was lucid off and on. I do believe, however, that, by the time she died, she was at the cusp of both middle & late stages, evidenced by the sharp decline in her illness in the last three months prior to her passing.
I also recollect that there were some days when she behaved quite ‘normally’ and was lucid. A moment later, she would be irrational, argumentative and demonstrate repetitive behaviour. Many of her symptoms would appear, disappear and then reappear later. My conclusion, therefore, is that dementia symptoms are not linear in their behaviour and go back and forth. What this also reveals is that no two people will have identical experiences although there may be broad similarities that fit the various models. What is more important is that family members and carers are able to recognise the symptoms as early as possible and take the necessary steps for a diagnosis to be made.
For further details, the Alzheimer’s Society and Alzheimer’s Research websites have information/ factsheet about symptoms.
https://www.alzheimersresearchuk.org/dementia-information/symptoms-of-dementia/
One of the key symptoms of dementia is memory loss. In my opinion, it is the catalyst for family members to question if there is something wrong with their loved ones. Memory loss in dementia does not mean that the person has amnesia, more so that they lose certain facets of their memory. In most cases that I’ve heard of, in the initial stages, it is the short-term memory that is affected so it’s likely that they will remember something way back in their past but not necessarily something that has happened even five minutes previously. It is vitally important to remember that dementia is a disease of the brain, and the memory loss should not be labelled as a sign of ageing.
There are a multitude of tools that can be put in place to facilitate a more manageable life for someone who is dealing with memory loss. As an example, Post-it notes can be used to remind the person with dementia of tasks that need to be completed, or as a reminder where certain objects are located.
Difficulty with planning & decision-making
One of the key challenges with dementia is that some of the symptoms are not that obvious to others unless you know the person well. Having difficulty in planning or making decisions, unlike, memory loss is one such symptom. These could be simple tasks, like traveling from point A to B, planning a meal or even keeping a diary of appointments. It could also be a task like creating a shopping list and going shopping to buy those items.
Problems with language, speech and conversation
I believe that humans are by nature, social animals, so communication of some kind is imperative. It does not have to be verbal communication. Afterall, deaf people communicate with sign language and can be perfectly sociable. Therefore, it is important for a person with dementia is to be able to communicate and express themselves. If is taken away for whatever reason it can lead to frustration and more importantly, loneliness.
Confusion about time of day and location
A common symptom that I’ve noticed amongst family and friends with dementia is that they lose track of time and/or become confused about where they are at that time. Some may even say that they want to ‘go home’ when they are already at home. Others may believe that it is morning when it is really the afternoon.
Misconceptions about seeing things and judging distances
When I reminisce about going to birthday parties as a child, I often remember a game where someone would be blindfolded, spun around and would then have to find the others. The experience of judging distances and having spatial awareness was difficult after the spinning had stopped. I often equate that experience of playing that game with a person with dementia experiencing the inability to judge distances. I believe you need to experience it yourself to understand what it feels like. An example of this may be when a person thinks there is a step or stairs in front of them when there isn’t and could fall because they have misjudged their surroundings.
Changes in behaviour and mood
Another key dementia symptom is that of changes in behaviour and mood. To date I have not met anybody with dementia who has not experienced this. That said, it is sometimes difficult to pin-point whether the change is due to dementia or other circumstances. A person who has lost a spouse after decades of marriage may become withdrawn, sad and depressed so is it their circumstance or dementia that has caused the change in mood/behaviour? The loss of a spouse can also be a catalyst to dementia. In most of the people I have met in the last few years that live with the disease, the key behavioural traits that I have noticed as examples, include sadness, frustration, irritability and anxiety.
A possible solution to adapt to these changes (depending on the stage of their journey), is to engage them with social activities. Alzheimer’s Society and other community led groups hold regular activities; Dementia Cafes, Singing for the Brain and such, so that people living with dementia can engage and participate and alleviate feelings of isolation.