How did Younger Onset Dementia go Undetected?

Stephen was diagnosed with Younger Onset Dementia three years ago at the age of 57 after being hit by a car while cycling.

I had noticed that there was something wrong when he was 55, but put it down to burnout from overworking, not knowing that it could be anything else.  Six months before the cycling accident, a friend insisted that he go for tests as they were convinced that there was something medically wrong with Stephen besides stress. He underwent blood tests, memory tests and brain imaging.  The conclusion after all the tests was that he was completely normal.  The doctor did however discover sleep apnoea which Stephen began treatment for.  After two weeks, many friends commented that he looked a lot less stressed and he had much more clarity in his preaching, so we presumed that the issue was solved.

However, now looking back through his test results, I’ve noticed that his MMSE (mini-mental state examination) was 20/30.  The normal range is 24 or over.  At the time the doctor didn’t pick up on this score, because Stephen was otherwise so normal.  I wonder, if the doctor had ordered proper tests back then whether dementia would have been discovered?  This would certainly have saved us a lot of grief.  In the early stages of dementia, many have benefited from medication and some can even resume their work activities.  But six months later after the accident, medication was ineffective.

From the day of the accident, he never recovered cognitively …

Here is the medical stuff for those interested:

Six months prior to the accident, MRI imaging showed no signs of patho-physiological changes for this age.  After the accident, a spect brain scan (nuclear medicine cerebral perfusion study) revealed advanced atrophy (brain shrinkage) and mild to moderate cerebral ischaemia (restricted blood flow).

After undergoing a brain scan, CT scan and MRI for suspected traumatic brain injury the diagnosis of fronto-temporal dementia was confirmed and because the frontal lobe was affected, his executive functions of planning, rational thinking, and appropriate behaviour for the given environment began diminishing. The signs of damage to the temporal lobe were his short-term memory loss and ability to construct sentences.  The brain imaging revealed severe cerebral atrophy in the frontal lobes consistent with Alzheimer’s Disease.  Additionally, there was evidence of multiple minor cerebrovascular accidents causing vascular damage to the left temporal lobe due to ischaemia, which was a sign of vascular dementia.  The imaging revealed evidence of small transient ischaemic attacks over several years.  Though these minor strokes didn’t cause paralysis, they may be attributed to his gradual loss of speech and vision. There was a marked decline in brain plasticity.  The comprehensive cognitive assessment performed over a week revealed a moderate level of cognitive dysfunction.  Poor spatial perception, may be attributed to damage in the parietal lobes, which led to his driver’s licence being revoked immediately.

So, what do I make of all this … is it possible that the trauma of an accident accelerated the disease?  Studies have shown that there are some definite links between post-traumatic stress and dementia.  According to the latest research in younger onset dementia, the disease cannot just appear but must have been developing in the background for some years.  In Stephen’s case, given the aggressive onset of the disease, medical professionals estimate that the disease was activated from the age of 30.  This predication was for his case, and may not apply to others.

Back to my question … what if Stephen worked so hard his whole life, trying his best to help everyone,  that he neglected to take time for himself due to the high demands of his job?  On the outside, he appeared to be so strong.  What if he allocated all the disappointments, betrayals and hurts of life in a compartment in his mind?  He certainly didn’t have the time to deal with them, because he was too busy providing solutions to everyone else’s problems.  I wonder if he thought that if he allowed himself to feel the pain of the all those problems, then he would be vulnerable and weak, and unable to help others?

In my opinion, as the person who knew Stephen better than than anyone else, I think that compartment in his mind got full.   The accident then tipped him over the edge.  To this day when he retells the story about the accident, he says that the driver was trying to kill him.   However, the facts are that the driver said that she didn’t see Stephen on the bicycle when she turned in front on him, so it was purely an accident.

The medical explanation would be that due to the progression of the disease, Stephen gradually became unable to deal with different situations due to cognition difficulties.  It does however not explain why from the time of the accident, he suddenly could not work or perform in a normal capacity again.

I believe the combination of all the stress, just got too much for him.  Whether my viewpoint is right or wrong, there’s a few things that I’ve learnt through this journey.   My hope is that others are helped by this tips, so as to minimise the impact of life’s trials:

  • It is important to deal with issues as they come along and not to leave them piling up in storage in your mind.  As hard as it is, face them.  Talk to the right people about them, until you’re free of the weight of the problems.  Even the problems are still there, you can be released from the burden of them.
  • Forgive people – as best as you can.  Forgiveness doesn’t  excuse or condone their behaviour, it sets you free.
  • Lower your expectations of people.  If you don’t expect anything or much from them, then it’s a great bonus when they prove you wrong!
  • If your job is way too stressful, quit!  You only have one life … it’s not worth the money in exchange for your health.
  • If you don’t want to leave your job, take some time off – at least two weeks. Tell the office not to contact you under any circumstances for the whole time.
  • If you’ve lost the passion for your job, maybe it’s time for a change.
  • Find some good trustworthy friends, and enjoy life and do fun things as much as possible …
  • Laugh and play as hard as you can … especially with your family or children.

Why are they Aggressive or Agitated?

Studies have indicated that that all humans have a variety of intrinsic needs, that if unmet, can lead to inappropriate or abnormal behaviours whether people are suffering from dementia or not.

If the person is agitated, there is something going on.  There a variety of things that could be making them upset, and the challenge is to try to pinpoint it or to distract them or redirect them to a different activity.

Here are some basic tips that I’ve learnt.  They may not always work, but they sure help:

  1. Approach the person waving your hand, so that they see that you are coming.  When someone just appears next to them with no announcement they can get a fright and be immediately agitated.
  2. Speak in a kind friendly happy voice, like you’re their best friend.
  3. Don’t speak to them like you are speaking to a child.  Speak to them like you would any other person, with respect, and use their name.
  4. Why do they keep saying “no” to everything I ask?  Try stepping into the person’s shoes when you’re communicating with them.  Are you speaking too fast or giving too much information at once?  A person with dementia may not be able to absorb lots of information all at once.   Saying “no” may be easier for them to say than answering all your questions!
  5. If you can’t get them to do what you want, use a hook – that means something that you know works for the person e.g.  When it comes time for the shower, don’t say “let’s take a shower and start pulling on their arm”, instead say, “let’s take a shower and then we will get something to eat”.  They may only hear the last part of your sentence and think you’re off to get some food, but the shower ends up being one of the steps in the process.
  6. If the person seems vague, try taking them into a well lit room or outside where there’s plenty of light.
  7. If you want them to do something, try being their guide not their boss.  Put your hand out and lead them, rather than grabbing them and telling them to move.
  8. If they were a church goer, pray with them.  Even though they may not be able to communicate effectively, their spirit is not affected by dementia and they can still pray with passion.

Here are some helpful caring tips that I’ve read and learnt:

  1. STOP – Think about what you are about to do and consider the best way to go about it. Just because a person has dementia doesn’t mean they don’t have feelings.
  2. PLAN AND EXPLAIN – Explain who you are, what you want to do and why.
  3. SMILE – The person will take their cue from you and mirror your relaxed and poisitve body language and tone of voice.
  4. GO SLOW – You may have a lot to do and you may be in a hurry, but the person isn’t.  How would you feel if someone came into your bedroom, pulled back your blankets and started pulling you out of bed without even giving you time to wake up properly?  Maybe you would be aggressive too!
  5. GO AWAY – If the person is aggressive or resists but is not causing anyone harm, leave them alone.  Give them some time to settle down and come back later.
  6. GIVE THEM SPACE – Any activity that involves invasion of personal space increases the risk of assault and aggression.  Remember, you are invading their space.
  7. STAND ASIDE – Always approach the person from the side not the front where you are an easy target to hit or kick.
  8. DISTRACT THEM – Talk to the person about things they enjoyed in the past and give them something to hold while you are providing care.
  9. KEEP IT QUIET – Check the noise level and reduce it if necessary.  Excessive noise in the background on top of you speaking to them can make them agitated.

Betrayal or Befriending

Individual perception is individual reality.  What one perceives as true is not always someone else’s truth of the same situation.

Speaking from our perception, we had no knowledge of any shortfall or lack in Stephen’s performance.  It was such a shock to both Stephen and myself in the way things were ended in an occupation of over 18 years.

It would have been much more helpful if caring associates had let us know that they saw lack in his performance or a drop in output as it occurred.  To find out later after being blindsided was very hard to deal with.  At the very least, it may have shed light on the issue, so that we sought medical help to find out why.

To both Stephen’s and my knowledge, no one ever sought to help Stephen with the issues they saw.  I think of the verse in the bible:

“Treat others in the same way that you would want them to treat you”   Luke 6:31

That is why I am writing this, I would hate for others to have to deal with the shock and betrayal situation that we faced.  I have learnt the importance of integrous dealing in every situation.  I have lived with the damage of talking behind our backs of the lack and the faults, and feeling that information was gathered as a weapon and not to get help.  The shock of dealing with a terminal illness is exacerbated when work associates, friends or family are insensitive to our perspective.  Crucial conversations need to be handled with integrity and transparency, and these are important skills to develop.   The end does not justify the means, but the means may well destroy any good that could come at the end of a season.


Caregiving Tips

These are some of best tips that I’ve read and learnt from personal experience:

  • Learn to say NO…
  • Tell the truth about how you feel, rather than what you think people would want to hear …
  • Laugh till it hurts … dance even if you are bad at it …
  • Be kind to yourself …
  • You can do anything … but not everything …
  • Don’t forget that you’re human …
  • It’s ok to have a meltdown, just don’t unpack and live there …
  • Cry it out and then refocus on where you are headed …

 The greatest loss in life is not death … loss is when life dies inside you while you are alive …  celebrate this event called LIFE.







Initial Diagnosis

The psychiatrist’s cold words, “Your husband has dementia” caused waves of shock and confusion.  How is this possible?  I thought only old people get dementia?  Why isn’t it burnout?  A flurry of questions flooded through my mind as I retaliated with the question, “Why are you saying that! Why isn’t it PTSD (Post Traumatic Stress Disorder)?”  Still sitting comfortably behind his enormous desk, the psychiatrist,  affronted by my question retorted, “Mrs Nichol, I see dementia patients every day and I see PTSD patients every day and your husband has dementia, and he will never work again!”  Again a myriad of questions flooded my mind.  As I began to verbalise the first question, the psychiatrist stood up from his desk and quickly shuffled us out of his office, ignoring the question and telling us to go to see our doctor.

Just like that!  That was our first real taste of the dementia world from a medical professional.  Did I see it coming?  No!  Sure, Stephen had had his moments of memory loss during times of major stress, but don’t we all?  He had been under considerable pressure for years from work.  After consulting with Mr. Google, I found that all his symptoms were listed as burnout.  I was told that this is a very prevalent condition in his occupation, where one is on call 24/7.  Stephen was still working and managing all his responsibilities until he was hit by a car while cycling.  From that day, he never recovered or returned to work, so I presumed he had PTSD which I had attributed to the trauma of the accident – like the straw that broke the camel’s back, so to speak.

But would anything have changed if the psychiatrist gave us the verdict in a gentle, empathetic way, and spent even 20 seconds to give us some reassurance?  Well, it wouldn’t have changed the diagnosis, but it sure would have prevented maybe one less of the many shocks that I was soon to encounter in Stephen’s health journey …  after all to me, dementia was a fear second only to cancer.