Chapter 2 - What is Vascular Dementia?

There are 700,000 people suffering with Dementia in the UK and as we are living in an aging population, this figure is estimated to grow to 1,000,000 by 2025.  This is a scary amount, which makes the hairs on the back of my neck stand to attention as I type.

Dementia is an umbrella term, which is used to describe the various symptoms associated with the progressive decline in memory and cognitive functions.  Alzheimer’s disease is the most common form of Dementia and it is the one which most people are aware of.  However, Vascular Dementia is the second most common form of Dementia and seems to hit people between the ages of 60 and 75 years of age.  During my working day, I come across many people with this disease and so often their loved ones tell me they do not understand what it is and ask how it differs from Alzheimer’s.

 My dear Mum had Vascular Dementia and I am seeing it more and more each day.  Each person I meet with this cruel, sinister, soul destroying disease, I take a deep breath, as I see my Mum in every single one.  The disease which I saw strip away her very self year by year.  Dementia affects not only the person struggling with the disease, but every single person in contact with that person.  The family is often torn apart; friends feel unable to visit anymore as the person and usually their carer, become more and more isolated as the disease progresses.  I would say that the only way I could describe the situation when I was caring for my mum in the middle stages of the disease, is that I was literally hanging on by my very fingertips; like I was clinging on, desperately trying to gasp for air, as I felt more and more that I was spiraling down to a place I really did not want to be.

There are three types of Vascular Dementia.  The first one of which I will talk about is Stroke Related Dementia, or otherwise known as Multi Infarct Dementia.  This is the form of Dementia that touched my life, or should I say, chaotically crashed into my life like a bolt of lightening, that you know can kill, but you never expect it to happen to you.

Multi Infarct Dementia is where a person suffers mini strokes, which interrupt that vital blood supply to the brain.    These mini strokes cause irreparable damage to the cortex of the brain, which affects language, memory and learning.  They are referred to as Transient Ischemic Attacks (TIA’s).  It is these TIA’s that result in temporal partial blockages of blood supply, which over time causes significant irreversible damage to the brain tissue.  With this form of Dementia, the person affected and/or their families may not notice any symptoms for quite a while, whereby Stroke victims see profound immediate symptoms.  Although, some people can suffer a single stroke, which it is then termed as Single Infarct Dementia.  With Multi Infarct Dementia, lapses can be followed by bouts of stability; however, unfortunately this gives way to further decline. Mum developed Epilepsy shortly after she was diagnosed with Vascular Dementia.  Doctors and Health Care Professionals informed me that this was common with this particular type of Dementia.  In addition, prior to the Epilepsy, Mum would occasionally experience a black out.  More often than not, I would notice a difference in her behaviour when she came round. 

Sub cortical Dementia (small vessel related Dementia) or sometimes known as Binswager Type Dementia is where the tiny blood vessels deep within the brain are damaged; a kind of gradual strangulation of blood supply.  These small blood vessels in the arteries that supply the brain can become blocked by plaque build-up on the inside of the artery walls, alternatively, blood clots, which have broken loose can clog a tributary further downstream.  Furthermore, a weak area of the artery wall may balloon outwards, thus forming an aneurysm, which can burst, resulting in brain cells being starved of oxygen. 

Thus, Multi Infarct Dementia is basically a large vessel disease, whereas Sub cortical involves sub cortical regions, effecting white matter, resulting from small vessel changes.

Thirdly, either Multi Infarct Dementia or Sub cortical Dementia can co-exist with Alzheimer’s disease, however, it is very difficult to distinguish between the two.  People touched by both these dementia illnesses will have the typical features of Alzheimer’s in correlation with other factors, as explained below.

Vascular Dementia is associated with a higher mortality rate than Alzheimer’s disease; this is probably due to the cardiovascular symptoms.  People are more likely to die from a heart attack or a stroke.  This disease presents itself with progressive cognitive, motor and behavioral decline.  A person with Vascular Dementia can often present themselves as being apathetic, hence showing behavioral problems with attention, disorientation and incontinence.  One of the main differences I have noticed with Alzheimer’s disease and Vascular Dementia is that Alzheimer’s sufferers tend to decline more steadily.  If you think of it as an analogy, Alzheimer Disease is like a ski slope, whereas Vascular Dementia is more like a staircase, with some steps being bigger and more uneven than others.  Mum seemed to decline somewhat rapidly.

A further more distinguishing difference between Alzheimer’s and all other forms of dementia is found within the brain.  Amyloid β proteins are a naturally occurring polypeptide that can be found in everybody’s brain.  However, in the case of Alzheimer’s disease, this protein builds up and binds to itself forming plaques.  Simply put, for some reason, they are unable to find a way out of the brain.  In addition, proteins build up inside neurons, thus affecting nerve cell function; these are termed as ‘tangles’.  Therefore, it is these features that are diagnostic to Alzheimer’s disease.  I must stress at this point, that a full concrete diagnosis of Alzheimer’s disease cannot be given until post mortem. 

In addition to the above, mood, behaviour changes and depression are more likely with Vascular dementia.  Patients with Vascular dementia tend to show an increased deficit on measures of frontal executive functioning than patients with Alzheimer’s disease.  Whereby, Alzheimer’s disease shows greater long term memory deficit than patients with Vascular dementia.

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of Alzheimer’s disease.  Vascular Dementia follows a very similar pattern, albeit in a more stepwise fashion.

                                                                                                                                                                                              
Level 1.
No cognitive decline -  no subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2.
Very mild cognitive decline - subjective complaints of memory deficit, most frequently in the following areas:
(a) forgetting where one has placed familiar objects;
(b) forgetting names of people they formerly knew well.
No objective evidence of memory deficit on clinical interview.  No objective deficits in employment or social situations. However, appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Deficits noticed in demanding employment situations.

Level 4.
Moderate cognitive decline (Late Confusional or Mild AD).  Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks.  Denial is dominant defense mechanism.  Flattening of affect and withdrawal from challenging situations occur.

Level 5.
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable, during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently, some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6.
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.  Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires assistance dressing
6b - Requires assistance bathing properly
6c - Requires assistance with mechanics of toileting
6d - Urinary incontinence
6e – Feces incontinence

Level 7.
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do.  Generalised and cortical neurologic signs and symptoms are frequently present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost  ₍₁₎

In any brain degenerative disease, the gross anatomical feature is the shrinkage of the brain; ventricles become much larger as tissue is reduced.  With all the differing dementias, a post mortem will show a different brain profile.   In addition to Alzheimer’s disease and Vascular dementia, there are several other diseases that come under the umbrella term ‘dementia’.  Lewy body dementia, frontotemporal dementia, this includes Pick’s disease and not forgetting those people that are living with dementia due to prolonged excessive drug and/or alcohol abuse.  Moreover, caregivers often see their loved one show dementia symptoms in the later stages of Parkinson’s disease.  Rarer types of dementia include Aids related dementia and Creutzfeldt-Jakob disease related dementia.

Mum’s symptoms of Vascular Dementia seemed so cruel, if only I could have taken some of those away – I would have done absolutely anything in the World to have just taken one of them away.  Please be aware though, that not everybody living their life with Vascular Dementia goes through the same.  Everybody’s experiences are so different; however, they do seem to have some common theme.  I will tell you about Mum’s symptoms and how they affected our lives.

Vascular Dementia, like other forms of dementias causes anxiety and panic to all those involved, especially after diagnosis.   People with Dementia do not always show changes at the very beginning.   However, first and foremost the one single sign of a dementing illness is memory loss.  The main thing that I noticed with Mum was the “looking for words”.  Mum was quite literate and to see her struggling to find simple words was somewhat disturbing.     I remember a conversation we had many years ago of which I will never forget, well I hope! “You can stay for tea if you would like, I am doing your favourite”, said mum.

Laughing, I said “Which favourite is that, Mum”? “I have many”.

“You know”, chuckled Mum.

“Steak Pie, Chocolate pudding with custard, your special fish and chips, steak and mushrooms”?  I reeled off to her.

“That’s it”, she said.

“What’s it”, I replied, getting quite frustrated with her.

“You just said it”, she shouted back.  “Stop messing me about, are you staying for tea or not”?

“What are we having”? I nervously laughed back at her.

“That’s it, that fish thing with what you like, you know”, she barked.

“Ah your special fish and chips”, I said.

Mum then hit me with a tea towel!  We both laughed.  In hindsight, this was the beginning of our shared roller coaster of a ride down the twisting path of Dementia.

Another thing I noticed at the very beginning of the illness was the fumbling around for keys and then the inability to actually get the keys into the lock itself.    I have noticed this with many people I have met with Dementia; it is so frustrating as the person struggles, you want them to do it for themselves, but there is that part of you that wants to grab the keys and do it for them.

Mum began experiencing hallucinations and paranoia, which was the most frightening part of the illness.  She often told me that men had been in her bedroom at night and that her neighbours were watching her get undressed through the windows.  “Big tall men came in and they pushed me this way and that way”, she told me one morning.

 I would try to comfort her, but nothing would work.  Some days, Mum would be inconsolable and the terror would last all day.  Other days, we would laugh as she said she would send the men down to me through the night!  One minute you would reassure her that she was safe and she would settle down, then the next minute, the whole thing would flare up again.  I cannot even begin to imagine how terrifying these experiences must have been for her.  I can only imagine how I would feel if I really thought that there were strange men in my bedroom at night!  Mum became obsessed with her neighbours.  It was a serious hate campaign at the time.  I was embarrassed, as Mum became more and more deluded.  I knew her neighbours well and time after time, I would go to see them and explain the situation, although each time I went I had to enter with caution, in case I was seen by Mum and was accused of liaising with the “enemy”. 

Mum lived in a downstairs flat and shared a garden with her neighbours.  Her neighbours had a lovely border collie, who prior to Mum’s illness, she adored.  However, things were different now, Sam the Border Collie was being ordered to poop in certain locations!  Her neighbours and I decided it was best that they erect a fence between their properties and they agreed that they would keep out of Mum’s way.  Within a few weeks, the fence was built, Sam the dog could no longer roam free and her neighbours could no longer spy on her through the night!  Well that’s what I thought.  Poor Mr. and Mrs. Jones (not their real name), had never done a bad thing in their lives, had always spoken highly of Mum and now were being accused of stalking, burglary and vandalism.

As I thought that things could not get any worse, they did!  Mum began accusing Allan, my stepfather of poisoning her.  She told me that he mixed things into her food.  Often when I would visit, Mum would be asleep on the sofa and I would talk to Allan.  I would notice sometimes that Mum was actually not asleep; she would open her eye and then quickly close it in a flash as she noticed me looking.   Her grey frizzled hair would be lankly laid across her sunken face, but there would be a little gap where one wild eye would peep out.   Later she would accuse Allan and me of having an affair.  Hot cups of tea and coffee would fly as would plates if they were unfortunate enough to be in the vicinity.

  I was in the middle of my third year at University with a 7 year old son at this point and to this day, I do not know how I got through it.  I would often have to stop the car on the way to Campus to poise myself and reapply my makeup, which had slid off the bottom of my face along with the steady flow of warm salty tears.  The confusion and stomach churning were a daily occurrence for me.  At that point in time, I could not understand how my mum could be so nasty to me.  “Why does she hate me”?  I would often think to myself.

My poor Mum, she did not hate me; I just wish that I knew as much about Dementia back then.  If only I could turn back the clock.  On so many occasions did I try to explain things to Mum?  How many times do I have to show you that the milk goes in the fridge, I used to think to myself, with sheer frustration.  I wanted to scream.  However, it all seems so clear to me now; how can somebody learn a poem if the language and memory part of their brain is dead?  The poem can be read and read and read forever to eternity, but it will never be learned.  You can show somebody with Dementia time and time again how to tie their shoes, but they are never going to re-learn that skill.    What you can do though, is making tying their laces much easier, by changing their shoes to slip ons!

Mum did sleep a lot, she had moved to the spare bedroom in their little flat.  She slept in the bed, where my son used to sleep when he stayed over.  “Why is Grandma in my Batman bed, Mum” he used to say.  Not only did Mum spend many an hour asleep, she also lost a vast amount of weight.  Often with Dementia, people forget to eat, or think that they have already eaten.  Mum didn’t eat because she thought it was laced with arsenic or some other poisonous ingredient.  Mum had spent her adult life drifting from a size 14 to 18.

  As a child I remember her trying many diets, including the dreaded Cabbage soup and the Cambridge Diet.  However, this was not an issue now for her as her size 10 skirts struggled to stay sitting on her tiny waist.  Mum was loosing a lot of muscle – this was evident in the way that her flesh was loosely hanging from her bony framework.  Her legs were now as thin as my son’s.  It was at this point that Mum began this really strange crazy walk.  She had this unsteady shuffling gait and more often than not, her tiny little footsteps would move so rapidly – her head would be tilted slightly forward, her back arched – arms would be stuck to her sides; total absence of swing.  I was fearful now that she would tumble forward and fall.  She always looked like she was running down a very steep hill and you was just waiting for the crash at the bottom.

In the moderate stages, depression did hit mum, she was swirling around in a black fog-like hole, the aggression and delusions seemed to be on a backburner at this stage as Mum seemed to loose her sparkle of life.  The eyes that had been fixated and wild now seemed liked empty pools.

People with Vascular Dementia often wander and find themselves totally lost, thankfully this never happened with Mum.  She often would take off, leaving everybody around her in sheer panic, but would always arrive at her determined destination!  I found this amazing and sometimes would often question her Dementia.  Some find they are left with symptoms of a stroke, weakened in one particular area or even paralyzed.  Again, this was not the case with Mum.

One thing I would like to get across is that if you are a carer of a person, not only with Vascular Dementia, but any cognitive declining illness, I bet that at some point you have thought “Oh my God, I am losing it too”!   Dementia is not a normal part of aging.  Furthermore, do not mix forgetfulness with memory decline.  Forgetfulness is common, especially when a person has a lot on their plate, i.e. a carer.  Stress and many other factors significantly affect our memory.  Many a time, I have walked into another room and then forgotten why I actually went in there.  Another common thing for me is losing my car at supermarkets.  I often feel that if my son was not with me, I would have to wait until the supermarket closed, then hopefully my car would be the last one there!  One must remember that there are many distractions in our daily lives – if we remembered absolutely everything and never disregarded anything, I am sure that we would all go crazy.  This forgetfulness does not affect our day to day lives (unless we have a long walk home)! 

When Mum lived with me, I recall once driving the short distance to the local chemist to collect my prescription.  As I walked back towards my house, I noticed my car had gone.  I went into panic mode.  “Oh my God, somebody has stolen my car”.  In a split second after this thought, I recalled that I had actually driven to the Chemist!  I had met people in the Chemist and the shop next door and had got chatting about various things.  I remembered thinking what a lovely warm day it was to say that it was winter.  All of these things had interfered with my already stressed and worn out brain.  In periods of stress, I have actually walked down my path and, pointed my car keys at the front door then pressed the button to open!  Another time that I am sure my son will remember is the Sunday lunch episode.  I was roasting a chicken, several pans were bubbling on the hub.  I had guests around for dinner and I knew I had to hurry up, because I didn’t want to be sitting down eating when Mum’s carers arrived.  As I served up the plates and poured the hot water from the kettle into our tea cups, my son kept asking, “Where’s my cup of tea”?

I then proceeded to get the milk out of fridge and pour it all over my son’s roast chicken dinner.  I think people knew by my exasperated face, not to remark on what I had just done.

People with Vascular Dementia lose their memory in a persistent and progressive fashion.  Forgetting words, events and names become increasingly more common.  Close family and friends will notice handwriting skills decline when receiving birthday and Christmas cards.  They become unable to follow any kind of direction and are unable to follow stories, albeit with a book or their favourite television programs.  In addition to this, they are no longer able to retrieve stored knowledge and everyday skills are eventually lost.  Repeating stories is very common. Mum would tell me the same story day in and day out.  Eventually that story would be replaced with another one and the same repetition would commence.  Being asked the same question a few times can be annoying, but when you have been asked the same question twenty times, it can seriously turn you into a monster inside.  Occasionally I would snap – although, Mum could not understand why I had snapped at her, because in her mind she had only just asked the question.  I experience this often in my current job now.  Mum forgot how to dress, how to cook, how to attend to her own personal care.  Clothes can become a jumble to them, wondering what goes where and which goes on first.  Handling money is a problem, when all concepts of its value go out of the window.  Mum and my Grandma (who had Alzheimer’s) both gave money away.  Mum stored money in a stocking.  A friend of mine who cared for her Mum with Alzheimer’s once told me that her Mum saved money under the carpet.  My Grandma had a thing for hiding underwear!  It is at this point when I think that my Grandfather’s motto is most poignant!