Early signs of dementia
I’m often asked what the early signs of dementia are. I think they are often quite obvious. The greater problem is not finding the signs, but knowing what to do with them, and getting other people to pay attention to something so feared and stigmatised.
The early signs of dementia may be very subtle. Everyone thinks about memory loss, but that’s misleading. Lots of people have memory loss for reasons that are unrelated to a diagnosis of dementia, for example stress or fatigue. Sometimes it is bad enough to be given a name “mild cognitive impairment” (MCI). That’s not even a proper diagnosis. It’s just a description. What you have is “mild”, compared to others. It is “cognitive”, that is, affecting your thinking and feeling. And it’s “impairment” which means you’ve gone downhill from your usual capacity. The unexpected turn of events is that even if this is what you’re told by the psychiatric nurse or the doctor, you’ve still only got about a one in three chance of ever being diagnosed with dementia. One in three people stay at that level, and one in three get better. So the people who progress to dementia are in a minority even if they’ve managed to persuade someone that there is a problem. It’s only “dementia” if it is progressive and continues to get worse.
Sometimes it is the person with dementia who is first to notice the problem. Because in later and more extreme cases the person loses insight, many people imagine that the person affected has no idea in the early stage. That’s wrong. The person who is starting to think they are getting dementia is often so horrified at the prospect that they do everything in their power to conceal it. They avoid going out in public in case they fail to recognise someone or can’t follow the conversation. They fear going about the town because spatial awareness problems mean they are more likely to fall over or walk into traffic. Handling money in shops becomes a trial, and pin numbers for credit cards cause problems. Their world narrows to the place where there is least challenge, at home. So, when everything at home seems normal, others might not realise how far the problem has progressed.
“Sometimes it is the person with dementia who is first to notice the problem. Because in later and more extreme cases the person loses insight, many people imagine that the person affected has no idea in the early stage. That’s wrong. ”
A daughter who has always helped her dad a bit might find she’s gradually, imperceptibly doing more because of a few little accidents here and there. He gets muddled with the washing machine, bringing out clothes too soon, still dirty, so she takes over. He puts a metal plate in the microwave, causing sparks and ruining the machine, so she arranges hot meals to be fetched for him. He gets angry because the tax people have fined him for late filing of his return, and she decides to do that for him in future to stop him complaining. He goes on and on about it, repeating himself in exactly the same words, with the same inflection each time. He’s on a loop. If she asked the GP at the earliest stage of these behaviours, she might be told that “everyone makes mistakes” and he’s “probably done these things before” without her noticing. It’s implied that she’s only making a fuss because there’s so much about dementia on the TV. She asks if he can be stopped from driving because he is now a bit inattentive behind the wheel. The doctor is reluctant to make this recommendation. She’s not getting any support. It’s hard for her to describe the level of his disability. It seems disloyal to go on about it when he’s done so much to conceal it from others.
So what is to be done? It depends on where you are on the journey.
If you’ve not got dementia, plan for the future just in case. Tell your children that if you ever get it, they have permission to make you get tested at the earliest stage, which is when the medication that is available is most likely to make a difference. Grant power of attorney to someone and make sure they know your wishes. Have a think about how care would be paid for in future and don’t land it all on your children. Adopt the lifestyle that would make dementia less likely or at least later in life
If you think someone you love has dementia, in the early stages and they’ve not already prepared for it, persuade them to give power of attorney to someone quick before it is too late, and make sure the attorney knows their wishes. Work out how their care is to be paid for. Even in the UK where most healthcare is still free on the NHS, people with dementia may have to spend a lot of money on care towards the end of life. And if you are the carer, join a carer’s group where you can get support and, as important, information about where to turn for information about benefits that you might otherwise miss.
If you have been given a diagnosis of dementia, I’m so sorry. It’s never a good thing to hear. But there is a lot of living still to do, and things you can do to stay as well as possible for as long as possible. The A to Z on this website will give lots of information about what makes a difference.
