On why diagnosis matters

I suffer from a chronic illness. It has been diagnosed as Long Covid but, in terms of treatment, it could be any number of conditions. In my case, diagnosis, the wording on a sickness certificate, made a difference to my ability to get paid. I also would not underestimate the mental release achieved from knowing ‘you aren’t just making it up’. But the actual treatment remains the same.

Early diagnosis of dementia makes a big difference to actual outcomes. And yet practitioners are reluctant to do it. From my own experience, the local diagnostic memory clinic misread my husband’s MRI and told me ‘He just needs to get out a bit more and drink less’. They did not even tell me that he could officially be considered to have Mild Cognitive Impairment. Another 15 months of often terrifying behaviour passed before referral to a clinic in the UK’s major neurological hospital resulted in a diagnosis of Young Onset Alzheimer’s Disease.

The most obvious thing we missed because of the delay was early medication. It’s not just that the current available drugs are only considered to work in the early stages of dementia. It’s also that they are the only medical treatments available. After a certain level of deterioration, the only thing left is ‘techniques for living with dementia’. This is also unlikely to change. There are no drugs being trialled, at least in the UK, for people in more advanced states of dementia.

The second thing we lost was adjustment time, for us and friends and family. I have mentioned my husband’s limitations in accepting his condition. It’s been a long and tiring process but he does now (sometimes) accept he needs help. I also have a much better understanding of what we are up against. Some of our friends have got over their initial denial and ‘cringe’ and are offering more help. I so wish we could have started the process a year earlier.

The third thing time would have bought is progress in achieving the practical adjustments needed for a life with dementia. Paperwork, home adaptations and the establishment of a daily routine don’t happen overnight and personally I didn’t even know about half the things I should have been doing. The earlier they happen the better.

All of this would be true if the Covid 19 pandemic hadn’t caused lockdown and the cessation of many medical, therapeutic and community services. In my case I also caught Covid and was too ill to provide any stimulation during lockdown. His deterioration was fast and obvious. My husband was diagnosed in October 2019. It could have been June 2018.

But perhaps I shouldn’t dismiss the ‘mental load’ side of diagnosis either. I have been enormously disappointed with the lack of practical help I naively assumed would click in after diagnosis. I am often angry about our current situation. But then I think back to how I felt as my husband went AWOL, forgot everything, engaged in behaviour that seemed bizarre, but had been diagnosed as ‘just needing to get out more’. It was terrifying and I felt totally helpless. The diagnosis, however devastating for him, at least allowed me to understand why.

My experience, getting a late diagnosis on a second opinion, is not unusual. It baffles me what lies behind practitioner reluctance. All diagnoses help. For dementia, a late diagnosis makes matters far worse.