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The Long and Winding Road

June 27, 2014

By Mary Beth Wighton

By: Mary Beth Wighton, Person with Dementia
Date: June 19th, 2014

 

In November 2013, in partnership with Murray Alzheimer Research and Education (MAREP), a group of individuals living with dementia and their care partners, came together to discuss the lack of both an Ontario and National dementia strategy plans. Conversations were guided using the philosophy “Nothing About Us Without Us.” The primary goal of the meeting was to educate, create, and document recommendations which will significantly enhance the lives of those living with dementia and their care partners.

Listed below is the first point of this list of 10 points developed by this group. It targets the diagnosis experience.

 Improve the diagnosis experience. This can be accomplished through/by:
• Testing experiences
• Shorten length of time between assessments / testing
• Timely follow-up after diagnosis from professionals
• Acknowledge remaining skills/ strengths / capabilities
• Driving license removal progress – needs to be re-evaluated
• Improved sensitivity during communication of diagnosis to persons living with dementia and family partner in care.

What is important to note is this challenging diagnosis experience is not specific to Canada. Across the globe, people with dementia are challenged by a long and winding road to diagnosis. For those with Younger Onset, this is particularly a great obstacle.To demonstrate the need for an improvement of the diagnosis experience, I will use myself as the example.

From the year 2009 – today, I have been diagnosed with approximately 12 different diagnosis'. They are:
• PTSD &bull
• OCD
• Major Depression
• Panic Attacks
• Forgetfulness
• Conversion Disorder
• No short-term memory impairment
• Over-reporting of memory complaints
• Probable Frontemporal dementia
• Pituitary cyst
• Frontal lobe problems
• REM Sleep Behaviour disorder

This July, one more diagnosis will be added to my list. For the last two years, I have had body twitching. Although, I always tell my doctors about this twitching, it is not until now that it is being followed up on. I have an appointment in Toronto at Sunnyside hospital. I will be tested for ALS or Lou Gehrigs disease. It is a motor neuron disease. If I am positive for it, things will become that much more difficult for me.

Getting back to our discussion point of improvement of the diagnosis experience, lets talk about shortening the length of time between testing and timely follow-up by doctors. From May 2011, until now I have been through a number of tests including:
• MRI's
• Beck Depression Inventory
• MMSE's
• MOCA's
• SPECT
• Sleep Test
• EEG
• Neuropsychological Testing

I can give various examples of doctors not following up with us to discuss results of testing. Fortunately, my partner in care, Dawn, is excellent at contacting them and finding out the results.There are other examples of doctors asking us the results for tests as their peers did not follow through. It can be months of waiting before we hear the results.

Driver license removal process. For me, along with my diagnosis of FTD, I was told simply, “You cannot drive effective immediately.” This is because of poor decision making. It seems to me there might be other more sensitive ways to communicate this. On the opposite side, some people should have their license revoked, yet it isn't. It is then left up to the family to try and negotiate with the person with dementia to not drive for they are unsafe to others and themselves.

Finally, “Improved sensitivity during communication of diagnosis to persons living with dementia and family partner in care.” I exercised my right and obtained copies from my GP of all documentation on file for me. This is where you find the “real comments” from the doctors. Most patients do not actually read what their reports say. I strongly suggest that you do. It is within your medical file, comments from doctors can either positively or negatively affect your health insurance.

Once again, I'll use me as the example. The following comments are taken directly from my medical file or said to me:

  • “I honestly believe this is all psychiatric.”
  • “I think Mary has adopted a sick role to not deal with her humiliations and to punish herself.
  • “There is no genuine memory problem and the issue is entirely emotional.”
  • “If you do have dementia, it is game over.”
  • “Get your affairs in order.”


During these past years, the focus from the medical community has been on what I can't do – not what I can still do. It is only through my own resolve and my partner Dawn's that we have striven to live carpe diem and not live in doom and gloom.

I recently was asked if I wasn't tired of all of the doctors, tests, and diagnosis’s. I am. If it weren’t for the demands by my private health insurance to continue with this, I'm not sure I would. So, the next time someone suggests to you that we have to improve the dementia diagnosis experience, I hope you remember me – and the story I told of the long and winding road.

Copyright 2013 Mary Beth Wighton