‘We waited more than three years for an accurate diagnosis of Alzheimer’s’
I’m Graeme, and my wife Trina was diagnosed with a rare form of Alzheimer’s called posterior cortical atrophy (PCA) early in 2013, at the age of 66. However, it was apparent that all was not well many years before that diagnosis.
PCA is caused by damage to the brain cells at the back of the brain that make sense of what our eyes are seeing. It is also known as Benson’s syndrome.
Trina is now in the latter stages of PCA and is registered as severely sight impaired/blind.
This is our journey to a dementia diagnosis and illustrates why we need more research into quick and accurate diagnoses. It would’ve made such a difference to our lives.
It all started in 2006 when Trina was approaching retirement at the age of 60. She had been Assistant General Secretary of an actor’s charity based in London and was responsible for the administration of the charity committees, their reports, and the maintenance of the databases of members and donors.
Trina noticed that she was having some facial recognition problems and difficulty reading telephone numbers. When playing cards with friends Trina was unable to distinguish hearts from diamonds. She was losing confidence in driving, and no longer wished to drive on motorways or at night.
The symptoms continued – there was a marked change in her writing style between July and September 2009: by September her hand-writing style had deteriorated to the extent that it was similar to that of a five year-old.
Following eye tests, Trina was referred to a consultant neurologist in September 2009. The neurologist confirmed that following a CT scan the results showed it was a probable stroke. This was a shock as we had seen no other typical stroke symptoms. She was placed on warfarin to lower the risk of future strokes.
Trina saw the consultant again in January 2011 because her thinking skills had deteriorated in the last year. The doctor repeated her brain scan and arranged further thinking tests, and maintained that it was a stroke.
However, Trina’s condition continued to deteriorate and she had a fall in March 2012, which prompted another brain scan. They told us this scan showed evidence of two further strokes.
Again, this came as a surprise to us both, as we hadn’t noted any other symptoms to explain them. But at this point Trina did feel that her memory was worse than it had been a year ago.
In September 2012 Trina was referred to a neuro-opthalmology clinic at the National Hospital for Neurology and Neurosurgery, with the referral saying that Trina had a ‘history of multiple strokes’.
After being referred on again to a specialist clinic for visual loss after stroke or brain injury, we were told that the cause of Trina’s symptoms may not have been strokes after all. The doctor detected a progressive element in her story and suggested she may have a degenerative disease causing symptoms to worsen over time.
This felt like a turning point as our own experience agreed much more closely with the suggestion that Trina’s condition was progressive rather than the result of multiple strokes.
We had never seen any other symptoms of a stroke so the diagnosis appeared to be inconsistent with our experience.
A period of time must of course pass before it’s clear that a problem is getting slowly worse, but we were frustrated that the possibility of Alzheimer’s had been raised and dismissed three years earlier.
Finally, Trina was diagnosed with posterior cortical atrophy (PCA). PCA is a rare form of Alzheimer’s affecting the back of the brain, which controls how our brain processes information from the eyes.
This explained a lot. All the early visual symptoms, and why Trina’s symptoms were getting more widespread, and worse, month by month. It was a comfort and a relief to finally get that diagnosis as we had spent so long watching Trina’s condition deteriorate, which just didn’t fit with a stroke.
Had we had an accurate diagnosis three years earlier Trina could’ve been placed on the correct medication which may have been more effective and helped her day to day. We would also have been able to access support sooner.
Compare this to my diagnosis of early-stage prostate cancer which was diagnosed, treated and effectively cured in seven months.
This is why we need more research into diagnosis. If we can do this for cancer we can do this for the brain diseases that cause dementia.
The value of a diagnosis at the right time
Getting an accurate and early diagnosis is extremely important. For us, it would have meant:
- Allowing Trina to volunteer for research studies at an earlier stage when the interventions being tested were more likely to make a difference.
- Medicines available to treat symptoms of Alzheimer’s disease might’ve been more effective and helped Trina more with day-to-day life.
- We could’ve found sanctuary in the PCA support groups much earlier, which would have helped us both with managing Trina’s condition and changing symptoms.
Research holds huge potential for improving how the diseases that cause dementia are diagnosed. That’s why Trina and I are such advocates for research funding into dementia.
In future, I hope research can deliver a wider range of more accurate tests for doctors to have at their fingertips, to help them make clearer and more informed judgements for people like Trina in the years to come.
With research, I truly believe this is possible.