The shock of diagnosis
I was in a very demanding job and had great career prospects. I felt that life was only just beginning for me. The year before this traumatic diagnosis, my divorce had come through and I had been awarded the Public Service Medal for outstanding service to science and technology. Life was on the up for me. But on that fateful afternoon, everything changed, and I felt cut down in my prime – with no job and a bleak future of decline and then death.
Worries and fears for the future
How could I provide for our future with so little time? My daughters were only 19, 14 and 9 years old; my eldest was away at university and my two youngest living at home dependent on me. My parents and sister were in the UK, so I had no family to help. What would happen to my girls? What sort of future would they face? And I felt so desperately sad that I would miss out on their graduations, weddings and children.
After a few months of struggle to get a second opinion, my terrible diagnosis was confirmed, and I started to take the very first anti-dementia drug. Although it made me feel very ill with nausea and diarrhea, I felt at last the fog lifting a little from my brain and I was getting fewer migraines.
The relief of giving up work
I was so relieved to be no longer working, as it had become such a struggle over the last few years, with blinding migraines every week. It was these terrible migraines – beginning on Monday and only easing the following Sunday - that had made me seek medical help. It took five years before the doctor finally referred me for a brain scan. The brain damage seen so clearly on the very first scan was very unexpected. My brain looked like that of someone in their 90s, not their 40s!
The relief I felt on stopping work made me realise just how much my brain had been damaged, and looking back I could see that the first signs were of getting lost on familiar routes, and feeling what I thought were symptoms of stress - getting words mixed up, and being exhausted and confused after I got home from work.
Cognitive and motivational reserves
Looking back, my prior ability with words and numbers helped mask my deterioration for several years. Even now, I am able to appear seemingly quite normal, despite having moderate to severe brain damage. The specialist has said if he only looked at my scan, he would not expect me to speak, let alone function well at all. So I see this as my ‘cognitive reserve’.
Also I think there might be some truth to the existence of ‘motivational reserve’. By keeping motivated, I remain active, socially engaged, and determined to keep trying new things. By exercising my brain in this way, it keeps re-wiring, despite losing connections and neurons. This neuroplasticity is expected after a stroke, when someone is helped to regain function. The difference for me is that each day I must try continually to regain lost function – it is not a one-off process but ongoing, as I keep losing brain function each day.
The importance of brain health
I did not get a great deal of sleep, as I came home with a pile of work, and needed first to get all three of my girls settled for the night. Only then would I start on my work. I would get up very early to finish my work with a fresh perspective, before getting my girls up and ready for school. So maybe a lack of sleep damaged my brain to some extent. But also a high level of stress may have contributed to my brain damage.
Lack of support for people with dementia
When I was diagnosed in 1995, there was no support for the person with dementia. All support was directed to our carers – but I had no carer, just children who were dependent on me! People with dementia were assumed to lack the insight and ability to be helped. We were written off as useless from the moment of our diagnosis. This made me feel very angry, and motivated me to begin my advocacy for improved services and support for people with dementia, as well as their families, around the world. Although much has changed since the late 90s, there is still a long way to go.
We desperately need a dementia-friendly society to help us cope with our disease, as there is no cure, not even a treatment to delay or stop the brain damage. We desperately need more research to find cures for the over 100 diseases that cause dementia, for unless these are found, we are on a one-way journey from diagnosis to death. Although anti-dementia medication only helps us to cope better, and does not stop brain damage, it should be offered as soon as possible after diagnosis. Treatment delayed, is treatment denied! We are on a path of continual decline, but the medication can help our functioning. The earlier we start the medication, the higher our remaining level of function.
Looking to the future
I am very concerned about the stigma and fear of dementia that there is in society. I hope for better care homes, which offer us good palliative care, because dementia is terminal. I am working for inclusion of people with dementia in all activities that offer support to us and our families. We are often the last people asked about dementia – and yet as I said in 2004, there should be nothing about us, without us! We are the real experts; we are the ones with the lived experience of dementia.
My hope for the future is that cures will be found for the many terminal diseases that cause dementia, and that while we wait for these cures, we will live in a dementia-friendly society which helps us function as best we can.
- Christine Bryden was diagnosed with young onset Alzheimer's disease 20 years ago at the age of 46. She is an acclaimed author and dementia campaigner and lives in Australia.