Early Bird catching the worm – the value of early diagnosis
It is SO important to seek an early diagnosis in dementia even though it’s difficult. We know that when people are worried about dementia, they often keep their concerns to themselves. A mixture of dread, disbelief and even shame make it almost impossible to speak out about cognitive impairment when things start to go wrong.
“they knew something was changing for months or even years before it became obvious to others that there was a problem, but she couldn’t bear to put it into words”
The person affected might behave as if they are unaware, but you can be sure that they’ve noticed. Denial is understandable. That’s not just hiding from others, but an automatic protective mental mechanism that makes the person avoid thinking about it. Sometimes they will push back heatedly if anyone raises the question. This reluctance to open up about possible dementia is shared by family members and friends. Often a daughter will tell me that they knew something was changing for months or even years before it became obvious to others that there was a problem, but she couldn’t bear to put it into words. And when she tried to raise it with others in the family, they brushed away her concerns.
Window of opportunity
One annoying aspect of the medicines that are available for people with Alzheimer’s dementia is that they work best in the early stages. So this reluctance to consider whether investigations are needed can mean that someone misses the window of opportunity for drug treatment. By the time all the ducks are in a row and the person gets past the GP, and past the tests in the community, and past a consultant in the memory clinic, not just months but years have been lost. The journey is long once you’ve started. Please try to be an early bird. Don’t miss out on valuable help on the way.
And it is not just about medicines. There are important bits of business that need to be seen to, like granting power of attorney to someone, and making sure everyone knows what you want to happen in future. There may be some important conversations you want to have, or visits you want to make, or even words you want to write down before these things become impossible. The earlier you get a diagnosis, the more time you have available to complete that vital work.
So, what are the three top tips that can be shared to benefit from this awareness?
1. Make sure you read good reliable information about dementia so that you know the early signs and where to go if you spot them. Book a visit to your GP, who will give you a physical check-up to make sure there’s no reversible infection or other disorder that’s causing symptoms that are worrying you. They might ask to see you again after a couple of months in case you spontaneously get better or stay stable. If you are getting worse, they’ll refer you to the specialist services.
2. Keep a diary. This is good for the person affected, as well as close family members. Not least, when you visit the doctor, you have a record of what has been worrying you, so that you don’t forget to tell them any of the details during a short consultation. A contemporaneous account also lets you see over time how things are changing. When a lot is going on, you will start to forget important detail. When did Dad first get lost? How often does Mum forget to lock the door when going out and is it sporadic or is it getting more frequent?
3. Get your affairs in order. This old-fashioned term used to be applied to people about to undertake a dangerous mission in case they didn’t come back. Dementia symptoms can be modified and slowed, but in a real sense, you don’t come back from it. To live as well as possible as long as possible you need to settle your worries, for example by sorting out how things will be paid for if you can’t manage money, how decisions will be made about how to manage your wellbeing if you can’t contribute to the discussion any more. You might not like the sound of this, but the peace of mind that comes from getting organised would help anyone, not just someone facing a difficult time.
There is more about Dementia and how to deal with it in my book Dementia the One Stop Guide. Looking after someone from the Carers point of view is in my book Carers and Caring the One Stop Guide. Lots more information is here on my website and you can contact me for consultancy and support via profjune@juneandrews.net
