It’s difficult for me to exactly pinpoint the beginning of my dad’s dementia. Our family has never been the sort to drop in on each other for cups of tea unannounced. My mother and I have often struggled to obtain the fabled mother/daughter bond that lots of other women I know seem to have with theirs.
This was probably exacerbated by the fact that my brother moved to Australia about 15 years ago, and once I went back to work full time and the boys were at school, I didn’t have the time to drive the 60 mile round trip as often as I liked. My mum liked to complain that she didn’t see us much, but equally would not make the effort to come to us either. (Now years later she won’t drive further than about a 15 mile radius from their home, so I suspect her reluctance was part of the beginning of this driving phobia).
13 years ago my dad had a stroke. He was at work, in his workshop, and he told us afterwards that suddenly his arm that had been lifting the hammer just stopped working. He kept missing what he was trying to hit. Fortunately he had the time to call my mum who realised something was wrong and immediately called his colleagues and an ambulance.
At the time Mum told me it wasn’t a “really bad stroke” and he seemed to recover well, apart from the use of his right arm, which even with physio never recovered properly for fine motor skills. Well enough for him to go back to work though, so where was the worry? Certainly no one expressed to me any real concerns.
I honestly don’t recall mum voicing much concern to me early on, other than dad was becoming muddled with words, but she expressed that in an cheerfully annoyed manner rather than one of serious concern. I probably only saw them once a fortnight and dad always seemed ok to me. Even when I moved down to London in 2014 nothing seemed to be terribly unusual. Mum would moan about dad in the way you expect your parents to and I put that down to them adjusting to his retirement. Dad was always busy and never really one for relaxing in the sense that most people do, so we always knew that retirement would be a massive period of adjustment for them.
Then came mentions of doctor’s appointments and talk of vascular dementia.
Vascular dementia is the second most common form of dementia after Alzheimer’s. It’s important to point out that Alzheimer’s isn’t simply another name for dementia, but a type of dementia itself. 150,000 people in the UK suffer with Vascular Dementia (520,000 suffer with Alzheimer’s, that’s 62% of all dementia sufferers).
“Dementia” describes a set of symptoms that can include memory loss and difficulties with thinking, problem-solving or language. In Vascular Dementia, these symptoms occur when the brain is damaged because of problems with the supply of blood to the brain, (for example, by a stroke). Vascular Dementia affects cognitive skills - memory, thinking and reasoning. Even Vascular Dementia itself has several sub categories. It’s also possible to have both Alzheimer’s AND Vascular Dementia.
Still with me?
These are all big scary words and it’s hard to absorb all the information available out there about dementia. I would recommend the Alzheimer’s Society Website as an excellent resource and place to start.
Their videos are particularly clear, here is the one about Vascular Dementia
I suspect most people with no close experience of people suffering from dementia think that the person just becomes gradually more “forgetful” and they have a rather cosy image of being able to sit and reminisce with the patient.
One of the worst symptoms of my dad’s dementia is his terrible dysphasia. Even if he wanted us to reminisce with him during periods of memory lapse, we aren’t actually able to understand what it is he’s trying to discuss with us, which in turn makes him frustrated and agitated. In fact, it was one of his earlier symptoms – he wasn’t forgetting what he was saying, but rather how to say it. He couldn’t remember names of things. The man who used to readily have pen and paper to hand to draw complex diagrams of a way of communicating ideas to people could no longer remember what a pencil was called.
I have struggled to make peace with the fact that I was unaware of what was going on in the early stages. I’ve done this now by realising that my mum, understandably maybe, hid or under played things to us. I don’t know if she did this to “protect” my brother and I or if she genuinely wanted to believe the half-truths she was telling herself - that it wasn’t anything serious.
However, as Vascular Dementia has a root cause – damage to the vascular system – there is no way anyone (yet) could have prevented the onset of the dementia. New drug trials meant that dad was put on Memantine – an Alzheimer’s drug – and it certainly seemed to slow his decline, which indicated that maybe he has both types. However once he started getting migraines (imagine trying to describe a migraine without having the necessary language) he was taken off it as they are a known side effect. His decline was noticeable, however in Vascular Dementia, decline is stepped – the patient can be stable for a while then make a sharp decline before stabilising again.
I cannot possibly cover everything in depth in one blog on this site, and indeed I don’t want my site to become about dementia itself rather my personal experiences with it; however pertinent points to look for in the onset of Vascular Dementia are*:
problems with planning or organising, making decisions or solving problems
difficulties following a series of steps (eg cooking a meal)
slower speed of thought
problems concentrating, including short periods of sudden confusion.
A person in the early stages of vascular dementia may also have difficulties with
language - eg speech may become less fluent
visuospatial skills - problems perceiving objects in three dimensions.
Some symptoms may be similar to those of other types of dementia. It’s important to note again the difference between Vascular dementia and Alzheimer’s - memory loss is common in the early stages of Alzheimer's, but is not usually the main early symptom of vascular dementia.
As well as these cognitive symptoms, it is common for someone with early Vascular Dementia to experience mood changes, such as apathy, depression or anxiety. Depression is common, partly because people with Vascular Dementia may be aware of the difficulties the condition is causing. A person with vascular dementia may also become generally more emotional. They may be prone to rapid mood swings and being unusually tearful or happy.
It’s certainly true of my dad that he has sometimes been aware of the of the difficulties the dementia is causing, and we have had issues with him being more emotional. The aggressive behaviour and mood swings are what has finally made mum make the decision to have dad cared for professionally in a specialist dementia home. However this is still a fragile arrangement and we have just been told by Social Services that they will not contribute to the home he is currently in and mum will need to move him to a different one if she “expects any help”.
Here’s some more facts for you*:
Two thirds of the cost of dementia is paid by people with dementia and their families.
Unpaid carers supporting someone with dementia save the economy £11 billion a year.
Dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke. As a country we spend much less on dementia than on these other conditions.
If you suspect someone you love is beginning to show signs of dementia I would urge you to seek help immediately. Don’t hide it, don’t be ashamed, don’t think you are being foolish. The sooner you seek help and receive a diagnosis the better.